click of the light

Dexcom G4 trial

2012-01-11T05:53:00.000-08:00

I'm a glutton for diabetes related gadgets and new bits of kit, but more than that - I am always desperate to seek out new technologies that will help the management of my type 1.

Unfortunately the NHS doesn't share my belief in this, and as such things like CGM systems are very hard to get funding for. I could choose to self fund a CGM system, and it is something I am thinking about (and only something I can think about as my parents have offered to help me out with the costs), but it is really, really expensive.

I have the Animas Vibe pump, which is only avaiable on the European market at the moment. It has Dexcom integrated into in, and uses the latest sensors - G4.

I told my rep a few months ago that I was thinking about self funding, but I wouldn't be willing to pay out for the system before trialling it. So, she agreed that I could borrow a transmitter and have a free sensor for a week.

I went to the hospital on Monday to meet her and my DSN. My rep insisted that we needed to do the insertion in the presence of a health care professional, and I also suspect that it's because my team (who I am new to) haven't had anyone use a G4 sensor either. So - it all worked out well in that my DSN learnt some stuff and I got a sensor!

Only...the first sensor failed. We put it in, it began its warm up, but 30 mins in I got a 'sensor failure' warning. No sweat at that point, we just restarted the sensor. This happened a further 2 times before my rep decided it must be totally dead, and called Dexcom to report it.

I was really disappointed to be walking out the hospital with the sensor connected, but these things happen. So my rep said she would get a replacement one sent to me the next day (yesterday). I was out of the office all day but I swung by on my way home and as expected, the sensor was sitting on my desk waiting for me!

I wanted to put it in ASAP, but I was also wary of rushing it and not doing it properly. I caught the bus home, which felt like it took forever. I needed to go for a short run so I promised myself I'd put the sensor in as soon as I got back from my run - amazing how quick I got out the house with motivation like that! I did 2.69 miles in 30 mins and came home sweating like a pig. I had a bath and then put the sensor in.

Worried I would do something wrong, I did it all step by step, following the instruction manual. Whilst it does have a fair few steps to it (stick it on...remove transmitter key...push in sensor...pull back inserter needle...squeeze sides to release inserter...put transmitter in place...click transmitter in place...remove key that clicks transmitter in...) they all flow pretty smoothly.

I was worried it would do exactly the same as the last sensor, but thankfully not! It picked up signal within a couple of minutes and I was able to see the large bar 'counting down' the 2 hour warm up window almost straight away. After 2 hours it prompted me to enter a BG, and 10 mins later I put in another one. And that was it! It started sending data!

I spent probably an hour just sat there, looking at it every few minutes. It was so cool! I watched myself fall, over a couple of hours, resulting in a hypo. It also woke me up in the night when it picked up a hypo, and I don't think I would have woken for that otherwise.

Speaking of the alarms - they are not as loud as I hoped they would be, but I am a fairly light sleeper, so I did hear all of them. I wore it around my waist last night so that it was close to the sensor, but tongiht I might try it clipped to my tshirt collar - a bit closer to my ears, and not tucked under my quilt!!

It picked up a hypo I had in the night, only 3.3 but I honestly don't think I would have woken up for it if the sensor hadn't alarmed. I wake up - or rather can't get to sleep - with most hypos, but I'd gone to bed really late so was pretty tired and conked straight out.

It also picked up a hypo just before I left for work this morning, and had just alerted me that I'm rising quickly. I've just done a finger prick test - 11.3 - and sensor says 12.5. That's the furthest out it's been so far, so I am keeping my fingers crossed that it just gets better - I hear that after the first 24 hours the readings start to be much closer to finger prick tests.

C'mon little Dexcom, c'mon!

Skydiving

2011-10-13T13:45:00.000-07:00

On September 23rd, I skydived for JDRF. It was AWESOME.

My instructor was a really nice guy who put me at ease straight away. I was the only one doing a tandem jump in the flight I went in - all the others were qualified skydivers doing their own thing, including one girl in a pair of hot pants and knee high socks!!! Obviously I didn't get to see what she was doing but she was very happy when I saw her when I landed!

It took a few minutes for the plane to get to the right height - 13500ft!! The qualified people jumped first, including one guy in a squirrel suit which apparently allows you to 'fly'!

The instructor said we could exit the plane in 1 of 2 ways: head first or feet first. I opted for head first. This involved us being strapped together VERY closely (he did warn me it would be the closest I'd ever get to a man with my clothes on, and he wasn't kidding!!), shuffling along the bench in the plane and me kneeling on the floor - at which point he stood up, so I was hanging in the air off him - then he walked towards the door of the plane and literally hung me out the side of the plane face first. At that point I was thinking 'wow/what the hell am I doing?!' 13500ft high up in the air and looking at the ground...

He then jumped out the plane and we began to freefall. The first second or two we spun around, upside down/round in circles and my instinct was to shut my eyes - but I opened them again very quickly as I realised it was silly to miss the view! We stabilised and began to freefall downwards - the instructor had asked me before if I wanted to do some spinning around and I'd said yes, so at that point he started spinning us round and round in circles. It was AWESOME but I had to ask him to stop after a while as I began to feel a bit funny! The noise was incredible, SO loud, the air rushing past my ears. At 6000ft/1 mile from the ground he opened the parachute and we jolted from being on our fronts to being straight upright.

We were above the clouds and he asked if I wanted to do some spinning. He gave me the cords to help him control the parachute, and we spent a few mins spinning left and right. He glided us through the clouds and the thing I'll remember the most is seeing our silhouette on a cloud - but the best thing was, there was a rainbow on the cloud. So we glided through the rainbow and swooped around a bit more before heading to the field to land. His experience really shone through at that point as he landed us directly in front of my parents and grandparents who were waiting at the field!!

I can totally understand why people do it as a hobby, I've never seen anything like it, whizzing through the clouds and then making our way slowly down to the ground! The views were incredible (I had to laugh when he pointed out the local prison...) and I would love the opportunity to do it again...I think I know what I might be asking for for Christmas!!!

I took my pump off and left it in my handbag (with my mum). In total it was probably off for about 30 mins. The instructor reminded me to take it off by asking what it was as I was about to put my skydiving suit on! I had shot up to 14 before the jump...I had predicted I would go high but I was too scared to put a temp basal on. I took a 1u correction and was 11.9 when I got back into the car straight after.

For 2 days after the jump I had tinnitus in my right ear which was unpleasant to say the least.

Anyway...it was amaaaaazing, I would love to do it again (...and probably will, don't tell my mum..!) but the best bit is - including the money my nan has collected - I've raised over £1400 for JDRF!

How is referring someone so difficult?!

2011-09-22T05:51:00.000-07:00

Last month I went to see a GP at my GP surgery. He happily agreed to refer me to a local hospital for my diabetes care. I then received a letter through the post a few days later to say I had been referred to the Choose & Book system and I should book my appointment online.

I tried to do this, only to be told there were no appointments available to be booked and I should wait to be contacted by the hospital by today. If they didn't contact me, I should ring my GP back.

Me being me, I decided to cut out the middle man and called the hospital's appointment line. I explained what had happened, and the woman very snarkily told me that ACTUALLY, my GP hadn't referred me directly, so they couldn't book me an appointment over the phone.

I am SO frustrated with the GP I saw. How hard is it to write a letter to the hospital, instead of sending me via the Choose & Book system?! It's not like I want to see a consultant for fun!

The other amazingly annoying thing is that I am due to be upgraded to the Animas Vibe, which Animas have said they will do as soon as I have an appointment with a consultant (having the appointment means I can see a DSN beforehand, and the Animas rep will set me up on the Vibe). So this means I am being delayed again onto getting the Vibe!

Arghhhh!

Sailboats.

2011-09-21T03:10:00.000-07:00

From Our Diabetic Life.

"Diabetes is a sailboat.

13 years ago I was told to put my child in a sailboat. Alone.

He was to journey out to sea and I was not allowed to escort him.

You can imagine the fight I put up. I yelled and pleaded. I dropped to my knees and bargained with God. I had a fit. But alas, my flailing was fruitless...he was literally taken out of my arms and thrown into the boat. I was given no choice. He had Type 1 Diabetes and there was no going back. He could not stay on shore. He could not live without the boat...it was part of him now.

I watched the boat go out to sea and I cried for what felt like forever. The world seemed to be in constant motion, while I was stuck on pause...mourning his separation from the shore.

The viciousness of the waves were horrifying.
My child was helpless.
I was helpless.
I would have done anything to be on that boat. I willed his diabetes to enter my body so I could switch places with him. But apparently, that isn't how it works.

Unfortunately.

I was given two tools to help my son. A telescope and limited control over the weather.

I have vigilantly had my eye set to that telescope for 13 years. There have been long stretches when I wouldn't leave the scope. I wouldn't shower. I wouldn't eat.

I have had comments throughout the years that my attention would be better placed somewhere other than the boat.

What they don't understand is that my child is on that boat. My heart. My soul. How could I ever walk away from my scope?

My one advantage is, with insulin and food, I can sometimes control the weather. I can smooth the waves and bring him close to shore. On those days it almost feels he is on land with me. On those days we dance together and laugh, and joke that the ocean has nothing on us.

But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do.

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown into despair myself.

My son has grown up on his boat, and I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. My husband and I live our lives on the shore waiting for storms, hoping for sun...watching each and every wave.

It is exhausting. It is tedious.

But on the summerlike days, when the boys drift closer to our reality...they hitch their boats together.

With their boats abreast, we can sit together and watch the sun set on the horizon and know that we can do this. We see the other boats adrift in the ocean, and their resolve and optimism lifts our spirits.

A bit ironic that the most amazing views...the most amazing perspectives...can be seen only from a boat.

No, it isn't easy. It isn't fair. The children with their feet on land are behind us, ever present...running around with no cares.

They don't have an entire craft to navigate. If a storm comes in they can simply get in their cars and their parents can drive them home.

They are not required to have constant courage or patience. They are not required to grow up quickly to take on captaining their own ship.

They are free to run.

Freedom. A gift my boys yearn for.

Freedom from navigating. Freedom from weather.

Diabetes is a sailboat.

Adrift in the sea.

The boats rock gently tonight. I can see my sons at the helms. Their silhouettes against the nights sky.

Each one, every bit a hero.

We pray that one day they may set their feet on the sandy shore and rest.

That one day they may find respite from their journey.

Type 1 Diabetes is a sailboat.

And 40 new sailboats take off from the shore, every day.

They aren't just boats underway with numbers in their wake...they are families lives, changed forever.

They are significant.

Every single sailboat is significant.

And every captain, an inspiration."

Bad advocate.

2011-09-18T09:51:00.000-07:00

Today I was a bad advocate. I'll put my hands up and admit it. I didn't deal with the situation in the way I could or should have but we all have our limits - and I guess mine were reached today!

I went to get my hair cut this morning. I like my hairdressers because they have a 3D, upside-down desert theme thing stuck on their ceiling. It's weird but keeps me entertained.

I really, really hate having my hair cut for one huge reason: the small talk hairdressers insist on. I know it's part of every hairdressing trip anyone ever makes, but it makes me soooo uncomfortable and awkward. Anyway - the guy asked me about my weekend and I said to him I'd been to a charity event yesterday (Flying With Diabetes). He asked me about why I went etc, and told him I have type 1 diabetes. The following is a summary of the conversation that occurred.

"Have you tried a diet?"

"No, type 1 diabetes can't be controlled using diet, I'm insulin dependent."

"Oh but you should try this one - it's called Simply Raw, people came off insulin in a week." (A quick googles tells me THIS is what he's probably talking about.)

"The people taking part would have had type 2 diabetes, which you can use diet to control."

"No, it was definitely type 1 - they came off insulin." (at this point I was ready to walk out, if only he hadn't been halfway through the hair cut...)

"People with type 2 also use insulin as a treatment, and I can promise you they would not have been type 1 - I use an insulin pump to give me insulin - people with type 1 would die without insulin."

At this point he backed down with "I am sorry".

I was really wound up by his comments - in his defence I guess he really didn't know what he was talking about, but it frustrated me so much. I got kind of shirty with him when telling him it was definitely people with type 2 and he then spent the rest of the hair cut trying to be chummy chummy with me. I could have handled that so much better, but I didn't.

Sigh. I'll keep going back, because they do great haircuts (although I wish I'd had it a bit shorter...maybe I'll go back and get them to reign in the longest layers).

Running

2011-09-09T06:56:00.000-07:00

Argh! I did it! I got a place running the London Marathon 2012 for the Juvenile Diabetes Research Foundation!

Now...help! I'd appreciate keeping in touch with people who run regularly.

I am not so scared of the distance, more of the toll it is going to take on my diabetes. I'm also pretty excited to see what that toll is; how is my body going to react? I feel that I can cope with the stresses and pain of the running...I'm more concerned with the highs, the lows and everything in between.

I have trainers. I have shorts and tshirts to run in.

I would love to invest in an mp3 player of some sort; I want an ipod but my uber tight budget won't allow for it. The one I have at the moment is kind of okay, but is small and not great for setting up playlists and stuff. I just read the post Chris wrote about music and running, and I guess this is another curve I'll be learning; what motivates me? Do I want to hear the sound of ~~nature~~ London as I run? Would a playlist of music be best, or a load of podcasts?

I've got 3 people who have volunteered to run with me, so I have no excuses. I also have a park pretty nearby, and I imagine I'll be getting to know it very well very soon...

I have a short attention span and get distracted really easily, and I know I will need to keep mixing things up to keep myself going. When I get onto doing much longer runs, I think I will start investigating getting out of London to do those runs. Brighton? Norfolk? Kent?

And so it begins...

But I'm only 23.

2011-08-26T04:18:00.000-07:00

I've just had possibly the most depressing meeting of my life: a meeting to set up my pension. It was incredibly dull, but at least now I know I will have some money around when I retire.

It made me feel a bit funny on the inside though, talking about retiring at 68 and the possibility of that age rising. Having lived with type 1 for 20 years, I've always been told my life span is roughly 15 years below the average person - although that being said, recent research says we will live just as long as any other (source). It's quite hard to get out of that way of thinking though, having been told it so many times; so when the pensions guy talked about retiring at over the age of 70, all I could think was "but I probably won't live that long."

And I know you can say that everyone has a chance of not living that long, and I could be hit by a bus tomorrow and not live long enough to see the complications of type 1 diabetes.

But it's always in the back of my mind.

(and another opportunity to plug my fundraising, yay! Please consider sponsoring me - on September 23rd I will throw myself out of a plane, also known as skydiving, to raise funds for JDRF. JustGiving takes donations from wherever you live in the world - an American friend of mine donated £20 very kindly, so don't be put off by that small factor! My donation page is at http://www.justgiving.com/siobhanskydives - all the money you donate will go straight to JDRF, as I have paid for the skydive myself.)

7 months!

2011-08-25T13:12:00.000-07:00

I worked out that tomorrow will be 7 months since I moved to London. 7 months! It feels like I have been forever, and I mean that overall in a good way.

London is a brilliant city. There is so much to DO! I haven't done half the stuff I would like to yet. I enjoy the fact I could never get bored, in theory. There is stuff to do every day, every evening - whatever the weather. Last weekend I went to Brick Lane and drank kiwi juice and ate amazing Ethiopian food with my aunt and uncle. I love going to markets - I can't really afford to buy something every time, but they are great to pass a few hours with. I especially love food markets with amazing vegetarian food!

I've been reverting back to being vegetarian over the past couple of months and am now officially, totally vegetarian. I need to do some food shopping and learn how to make the amazing marinades and sauces I taste in the food markets!

I've also been looking at getting a hobby of some variety - I think I am going to sign up to a block of ballet lessons. I did ballet when I was a teen and got as far as buying pointe shoes (but had to quit and never got the chance to use them). I love how hard a work out ballet is and how much fun it is. Just got to wait for payday so I can pay for it! It will also help with my overall fitness levels...which if I'm going to run that marathon next year, I really need to actually do something about!

Speaking of running the marathon, I have a couple of fundraising ventures this year. All in aid of JDRF.

The first? A skydive!

As someone who isn't so keen on heights, I figure the best way to get people to dig deep for JDRF is to throw myself out of a plane!! Type 1 has been in my life for 20 years now, and I'd really like a few years of my life without it - so please consider sponsoring me. I have paid for the jump myself, so all the money you donate goes to JDRF.

I'll be jumping on 23rd September, at Sibson airfield (near Peterborough, England).

http://www.justgiving.com/siobhanskydives

Thanks!

Memory like a SIEVE.

2011-07-28T08:04:00.000-07:00

Seriously.

I just can't seem to hold any information at all at the moment. It's like people tell me things and they go straight in one ear and out the other. My attention span is at the very worst it has been in a long long time. I am doing everything I can to get around all of this; writing lists of things to do, making notes of conversations I have, so on so forth.

And I'm still struggling. It's really bothering me - it means I am nowhere near as efficient as I could be! I want to be productive and on top of things, yet I am finding it pretty hard.

I can't tell you the amount of times this week I have sent follow-up emails trying to sort things out/arrange things/checking details of discussions - because I have forgotten what I have discussed in meetings etc. The main reason I can't tell you is because I honestly can't remember!

If anyone has any suggestions on how to make this easier, please tell me - no matter how big or small! Is there anything I can be doing to help myself? Should I invest in anything? Help! This has been getting progressively worse over the past couple of weeks.

Thankfully I have not forgotten anything type 1 wise - I always bolus, test etc. I suppose a little part of me is worried that one day I might!

An open letter to HCPs who do not 'get it'

2011-07-21T09:25:00.000-07:00

Before I start the letter, I'd just like to point out that this is aimed at those health care professionals that do not seem to have an inkling of what it is like to live with type 1. I know there are some amazing doctors and nurses out there who are just fantastic...this is not for them. I've been thinking about this topic a lot as I am looking to move to a new team here in London, and this is what I imagine I would say to them if they turn out to be non-getters.

Dear Dr/Nurse Who Does Not 'Get It',

I've been living with type 1 for just over 20 years now. Having been diagnosed at the age of just 2, that's the whole of my life as far as I am concerned - I don't know what it is like to live without it. I'd really like you to remember that sometimes; I know no life without this thing. I have no living memories where type 1 has not been part of them - I can't imagine life without insulin vials, test strips and annual bloods. I can't imagine doing any kind of exercise and not having to plan it out and feel like I'm doing an experiment on myself. I definitely can't imagine looking at a plate of food and not worrying about what it is going to make me feel like in an hour or two. I have no idea of the concept of a 100% carefree, worryfree childhood (I was told from a young age I would die of a complication of type 1).

The thing is, when I walk into your room, I sort of need you to forget about everything else, just for a few minutes. I'll discuss my numbers with you and any problem areas I need a hand in ironing out. I'll tell you how much living with this thing drags me down some days. All I'm asking is that for a couple of minutes you attempt to put yourself in my shoes, instead of thinking that throwing numbers or statistics at me will help.

After 20 years of this game, I'm pretty down with it. My numbers are pretty predictable (which does not mean stable); my body (and when I say body please read: my body AND my diabetes) behaves in a way that I have come to know almost intuitively. That isn't to say there aren't some surprises along the way - but I'm pretty in tune with my body. So when I present an issue to you and you give me a textbook response, please don't be shocked if I ask for alternatives. I've probably tried those text book suggestions; I don't get to see you very often, so I have to have other resources. (here's looking at you, DOC).

I need you to trust me, too. I need you to know that I know my body best. I need you to give me the credit I'm due for doing this diabetes thing every day. I'm pretty open at trying new things and listening to suggestions; I'll always listen to what you say. Please don't be afraid if I challenge you on something; I need you to hear my thoughts on what you are saying.

I remember the first time I felt empowered in an appointment. Shortly before the appointment, age around 10 or so, I had asked my mum why I couldn't have a pancreas transplant (which in my head, was the answer to this whole type 1 problem). Knowing my appointment was coming up, she told me to ask my consultant, which I did. He was fantastic and explained to me at a level my 10 year old self could understand; that the thing with type 1 is that even if I had new insulin producing cells, those would be attacked too. Plus the amount of drugs I would have to take to keep my body generally rejecting them would be too much. Looking back, what strikes me about that conversation is the way he did not patronise me; he did not talk to me as if I'd asked a stupid question. I'd really like to continue feeling empowered and for you to be willing to share your knowledge with me.

I also need you to appreciate, not necessarily understand, the total fear that can come with living with a chronic, life long, can-kill-you-when-it-wants kind of condition. I am totally terrified of what will happen in the next few years in regards to my long term health; will I see complications? Are my kidneys going to be okay? Will I eventually end up with eye damage? The things I hear, mainly from the DOC, say that actually I have a pretty good chance of not developing complications. But on the other hand I could develop all of them. It's why I'm pretty anxious about my control.

I'd also love it if you could have a little appreciation of the word 'burnout'. This does not mean I am noncompliant and I don't care about my type 1; actually it's usually caused by caring TOO much and feeling very much drowned in living with it. It's the time when I really need some support and some help.

I've been playing this type 1 game for 20 years. It's basically a damage control game; I need to minimise the impact of my dodgy pancreas on the rest of my body. I can't do that alone and whilst I know that unless you live with type 1 you won't be able to fully understand it, I just ask for a little appreciation. Talk to me! I'll tell you what it's like (it's hard). I'll give you my honest and frank opinions on living with a condition like this (doable but so much more bearable when you have support and understanding. Also, scary).

With hope,

Siobhan

Wedding stuff!

2011-07-17T08:41:00.000-07:00

My mum's partner finally proposed - after 12 years! - on Valentine's Day this year. They are getting married on July 15 2012 - 363 days away!

Yesterday was one of the first weekends when my mum, sister and I have all been in the same city and free at the same time...so of course we took the opportunity to go dress shopping! I tried on a bridesmaids dress in the first shop, the one on the left:

We all liked it (although at 5'3 I'll need about a foot of material hacking off the bottom of it!) so it's on the 'maybe' pile. Mum think she is going to have teal as her colour.

Mum tried on this in Monsoon and it looked absolutely gorgeous:

My sister tried on this and we think this might be the choice for us as bridesmaids. It's from Coast.

I would need to work out what to do for the length as it would be far too long on me, and I think both my sister and I would want straps adding on to it.

I went out with mum and her work colleagues last night to a gorgeous bar where we had lovely food - The Vaults. It was really posh inside, our table was in a little vault-y/alcove thing, and there were loads of booths which had tables and comfy seats in. I'd definitely go back there even though it was on the pricey side. I drank a lot of wine - probably a bottle in total, but I had it over the course of 6 hours so I wasn't drunk at all! It didn't really affect my levels to be honest, I woke up on 8.4. I dipped to 5.1 before lunch thanks to bolusing for 40g of food but only eating 30g (which makes me panic - are my basals out? do I need to look at my insulin:carb ratio? is my correction factor right? I've tweaked it from 1u:8g to 1u:7g as a start).

My mum has baked a banana cake so I can't forsee decent levels sticking around for long!

2.2

2011-07-11T12:46:00.000-07:00

I walked to work this morning. The last time I walked to work, I ended up hitting 15.7 (funny how some numbers stick in your head). Wary of this, I chose not to take any action before I left the house - I had my breakfast and headed out, bag stuffed full of hypo supplies (seriously, I couldn't zip it up).

What I didn't clock was the huge difference between last week's walk in and this one. I had breakfast this time. Last time I had planned to walk and then reward myself with breakfast when I got to the office.

Which meant I had approx 8 yummy units of insulin running around my system, plus 2 crumpets in my stomach.

Which, if you need telling by now, is a recipe for disaster.

I had walked for about a mile when I started to feel a bit funny. It was boiling hot, so I thought I was just a bit hot. I also had a ridiculous motto in my head: after last night's shenanigans, I was thinking 'I will not give in to diabetes, I will not be defeated by this'. Only it got to the point when I was almost crying whilst walking and I realised that I needed to give in and test. The second I stopped to grab my kit out my bag I knew I was low. I couldn't coordinate myself - I was all hands and couldn't move things out the way. I ended up kneeling on the pavement, pouring out the contents of my handbag trying to get hold of my testing kit.

So, 2.2. At this point, I freak out. I still have 3 miles to walk AND I WAS NOT GIVING IN TO DIABETES. I had the carton of juice in my bag and worked out an action plan. I knew I was really close to some shops, so I decided my best call of action was to grab a bottle of lucozade-y goodness. (Blackcurrant flavour, for reference). After sitting on the pavement in tears - it was one of *those* lows - I waited until I was feeling okay and set off.

I made the last 3 miles just fine and in good time. I was 11.3 when I got into the office which I'll take over 2.2.

Tomorrow's tactic: massively underbolus for breakfast. And stick 2 fingers up to d.

Nights like this.

2011-07-10T16:28:00.000-07:00

It's 00:11. It's night like this I hate.

I went out for a brilliant walk today. I met up with fellow D John, and we walked over to Hampstead Heath (very famous park in London, fyi). When we got over there, we planned to meet another D, Claire, for lunch. Whilst waiting for her, we found a very posh cake shop and sat outside to enjoy cake. John leant over and whispered, "it's Tim Burton and Helena Bonham Carter!" - and it WAS! I have never been a celebrity spotter but I was totally in awe of watching very famous people walking up the street, kids in tow. Pretty cool moment for a saddo like me!

Anyway - the walk ended up being about 6 miles, give or take. We dodged hypos with sports drinks and fruit. We both hovered in the 4 - 8 range which I thought was pretty ace. We met up with Claire and set off to find a pub...we ended up at a nice albeit expensive pub (seriously, £7 for a feta and watermelon salad), before wandering back through the park. John and I hypo'd at the bottom of the hill, both of us hitting 3.3. Claire was in the 5s.

We sat down for a while before heading up to another part of the hill. By coincidence, the family I live with were there too so we managed to jump in the car and get a lift back! I was pretty relieved as I didn't fancy another 6 mile walk back!

My levels have been great all evening. Really great - in the 5s and 6s. I had burger and chips and cake for tea (uh oh!) which I bolused appropriately for, or so I thought! I had 12u, 80/20.

I was 5.7 at 21:45, and 16.9 at 23:45 :(

I figure this is just the spike from the burger and chips.

But I feel sick. Like, really nauseous. I am wide awake and yet shattered. I want to get up and walk to work tomorrow but I am worried about being really tired (thankfully I worked a load of extra hours last week so I am doing shorter days at the moment). I am also incredibly resentful towards D right now - I just want to go back to sleep. I don't want to wake up in a couple of hours to check I have come down. I just want to sleep through the night. I don't want to have to be diabetic tonight - not tonight. It's Monday tomorrow - duh! - and I could really do with starting my week positively and in good shape. Only I'll be tired from the lack of sleep tonight. Maybe a 4 mile walk will wake me up?!

Walking. And not diabetes failing.

2011-07-05T04:02:00.000-07:00

At the moment I'm really motivated to get fit. Don't get me wrong - I'm no Iron Woman. I'm not going to start running marathons next week (no, that's next April in the London Marathon...eeeek).

I decided the easiest way would be to start walking to and from work. It's exactly 4 miles, door to door. It is taking me 1hr 15 mins at the moment, but I'm pedantic and want to get that down to an hour.

I walk just like this...except in central London in trainers

Walking is one thing I find really messes with my levels. It's the fact it's a steady form of exercise...it's as though the glucose just goes trickling straight out of my blood.

Yesterday I had a sports drink (25g carb for the bottle) 30 mins in to the walk. I was 11.2 before I set off but had a little bit of IOB so was quite comfortable with that. At the 30 min mark I was 8.something, which is why I stopped off to get the drink. Another half an hour and I was down to 3.9. Did I mention I'd put a -40% basal on when I began walking? I downed the rest of the sports drink (I'd had about half of it) and had a Hypofit sachet (bleugh). I really slowly walked the last mile home, I was 6.6 when I got back.

I woke up on 8.3, which is...okay. I really need to look at my overnight basals as I keep waking up in the 8 - 13 range - a few weeks ago I was in the 5 - 7 range!

I set off on that 8.3, with a 1 hour -50% basal. I was worried about hypoing again (fear of hypos...something that I am not great at admitting but feel it is important to do so) so I started to drink my sports drink straight away. I made a strategic stop off at a supermarket where I picked up a banana, a carton of AJ and a cereal bar. About 30 mins in I munched on the banana with a 2u bolus, happy I was warding off any potential hypos.

In fact I warded them so far off, I hit 15.7. Bleugh! I let the pump correct that (3.15u) and when I got to the office I was 8.2. I decided to eat the cereal bar (with full bolus) and at last check I was 10.3. I'm hoping I'll come down a little.

So...I need to decide my tactic for tonight's walk! Do I reduce my basal much further beforehand and hope that that stops the hypos? Do I go carb heavy half way through the walk? Choices, choices! I plan to do this most days (although I do imagine I'll end up getting the bus home a couple of times a week when I'm shattered!) so I have lots of practice coming up.

Diabetes Week...fail

2011-06-03T06:55:00.000-07:00

I'm really disappointed that I didn't make it through the diabetes blogging week. Unfortunately, as it does - life got very busy and I found myself without time each day to make a post. I am hoping at some point to catch up, but again, life is busy and I don't know that I will be able to (that, and I don't want to say I will and then feel like I've failed if I don't manage to).

May was a busy month at work, but most importantly, I went on holiday! I spent 9 days in Split, a coastal town in Croatia. It was beautiful and hot and somewhere I'd definitely recommend - but maybe not for people with children as there didn't seem to be a great deal for children to do.

I went with a good friend of mine who is also type 1, Naomi - which made the holiday so much easier! It was great knowing that she understood and felt the same about things - worrying about where to keep test kits when we went to the beach, not getting sand in them, taking glucagon on our rafting trip, etc.

I'm not sure why my hair is so poofy

We ate out lots, and for the most part we dealt with the d pretty well. We met each other in the kitchen a few times at 3am due to hypos, and drank our way through litres and litres of Coke Zero. We had highs and lows and daily naps! We both agreed that we made great holiday buddies, so hopefully we'll do it again sometime (although not in the near future - Naomi's just been accepted to study Midwifery at King's College London, woo!)

The following photo is cool for many reasons: the backdrop is amazing, the water was so clear and we had fish swimming around our feet, but mostly the caption Naomi put with it on facebook - 'we may be on holiday, but diabetes still comes with us'.

testing on the beach

We did some awesome stuff - swimming in the waterfalls at Krka National Park, rafting down the river Cetina (I can attest that Skittles still treat a hypo, even after being washed with river water and having all the colour stripped from them), visiting the most photographed beach in Croatia, and for the most part we just chilled!

We drank many many cocktails (which caused a few of those 3am hypos), got lovely tans and came back tired but feeling really relaxed.

I'm hoping to get transferred to a team in London soon and start seeing a consultant again. I've heard good things from a friend about a CGM friendly consultant, so I may explore that - with the news of the Animas Vibe finally getting its CE marking, I'll be upgraded to it - it has the Dexcom integrated into it. So I'm looking to be able to get access to Dexcom sensors (in my little dream world I'll get funding, in reality I'd just like to have access to one a few times a year to check up on how things are doing - but I can keep dreaming).

Diabetes Blog Week #1

2011-05-09T04:49:00.000-07:00

I love this time of year! Another great D-blogging week. Here's my contribution for today!

Admiring our differences

Today let’s talk about how great it is to learn from the perspectives of those unlike us!

The blogs I really love reading, that are written by people without d, are the blogs written by parents of kids with t1. I am involved with the Children With Diabetes UK group, and have got to know so many of the parents very well. They teach me so much - and I love learning from them! They have such a big job to do - keeping their kids alive and safe, and they all do it so well. Sure, they make mistakes along the way - but who doesn't! I know I make mistakes with my own care, and I'm the one that can feel the highs and lows.

I love hearing what it's like from what I consider 'the other side'. They make decisions and choices that will impact on their child's health in the short term and in the long term. They push for the best for their kids, and still maintain a sense of 'normality' (whatever that is) for their families. Their strength and confidence is something I admire greatly. I know at times I have drawn on that strength and confidence in situations I've been in.

I obviously hope that I will never be a d-parent, but I know that should I end up in that situation, I will have a fantastic group of supportive people around me.

I have recently started to help look after a couple of kids (not a regular thing at the moment) who have type 1, and I didn't realise how terrifying it is to have that responsibility. Even though I used the bolus wizard on their pumps, I was absolutely petrified at the thought of putting insulin into their bodies - what if I got it wrong?! It's not quite the same as the full time care given by their parents, but my god it was scary.

So: a big shout out to blogging parents. You guys are fascinating to read, please keep it up!

Gigging - again!

2011-05-06T05:07:00.000-07:00

I am going to keep this as d free as possible, so I'll get my rant out now: I am NEVER having chinese food from Camden Market EVER AGAIN. I bolused like a bitch for that food, and still hit 21.6. Stupid stupid food! Oh well - I just corrected and tested and as expected, I fell right back down into safe numbers after a few hours.

My dad and I went to see Tim Booth again, this time in London. We VIP'd it again, meaning we got to see the soundcheck.

We arrived a little early, and had to wait over an hour after the published start time to go in for the soundcheck. The soundcheck was fab, as always, it was great to see the band.

After the soundcheck dad and I headed to the market to grab food. As we were walking through, I said to my dad "look at that guy in front, he has a VIP pass on too" then I looked at who he was walking with - it was Tim!!! My dad and I try to be pretty respectful of the band when they are not on stage, so we watched him hop into a taxi with his luggage.

When we got back to the venue after the food, I met up with a friend I met at the Birmingham gig, and we hung around the back entrance of the venue - where all of the band bar Tim were hanging out! It turned out that the keyboardist (Dan), who also plays the sax, was panicking (well, all of them were) as his sax had fallen off the stage and broken! We spent a little while chatting, and he was a genuinely lovely guy - very normal and down to earth.

Me and Dan

chatting!

Thankfully, they found a replacement sax literally minutes before they were due on stage. I also chatted to Neil who plays bass:

Me and Neil

Gig was AWESOME. Seriously fab. We stuck around for ages afterwards to see if we could get our VIP passes signed, and they all very kindly obliged :) I also chatted to Dan again which was fab:

All in all - fantastic gig. I can't wait to see them again. I'm hoping to make it to Hop Farm Festival, but it all depends on £ and logistics!

(all photos credited to Lou Purplefairy :))

Tim Booth gig, April 24th 2011

2011-04-25T13:34:00.000-07:00

Anyone who knows me knows I am a massive, massive fan of the band James and their lead singer Tim Booth (I've written about them before, here).

Last night Tim Booth came to Birmingham, England, and my dad & I had VIP tickets (which entitled us to watch the soundcheck, and to get into the gig first). There were about 25 or so people with VIP tickets.

The soundcheck was awesome; they played 4 songs and chatted in between. Despite the coordinator insisting we all got out the venue ASAP, we politely asked the band members to sign our passes and for a photo with Tim. There was a Canadian couple who had flown in especially for his tour, so Tim spent a few minutes talking to them before having his photo taken with my dad and I:

Dad, Tim and I

Having been a fan for such a long time, it was such a pleasure to meet him.

I'm still on cloud 9, so the highlights were - in no particular order:

- seeing the violinis/guitarist Saul, who also plays with James outside the venue (he dodged fans, but it was cool to see him)
- getting a setlist, and Tim's lyric prompt sheet!
- buying 2 signed special edition copies of his latest album, Love Life
- meeting a really cool couple who ended up being really protective of me when I had a hypo and taking a real interest in my pump (I didn't want to talk about diabetes really last night, but sometimes you can't hide it)
- standing at the very front right in front of Tim's microphone, singing and dancing along to all the songs
- singing into the microphone with another lady (who had an amazing voice and was really in the moment, it was really cool)
- after said singing, I said 'thankyou' to Tim when the music had died down - he looked at me and winked!! Then he held my gaze (see: great big grin) for a few seconds
- seeing a woman getting all the band to sign her back, then announcing she was having their signatures tattooed on this week!!
- Tim has changed his FB profile photo to one with me in it!

that's me on the left...well, half my face!

And the very very best bit?! I get to do this all again next Tuesday in London!!!!

20 years - from a mum's perspective

2011-04-19T07:32:00.000-07:00

I am so, so honoured that my mum took the time to write this. Please, please share this everywhere you can - I think she gets the message across so clearly about why we need a cure so badly (I know I'm biased as she's my mum, but I think it's great).

--

19/04/1991

Twenty years ago today my life changed forever, taking me on a journey which I never dreamt I would make, did not want to make and hated every minute of it.

Siobhan had been unwell on and off, the usual viruses that 2 year olds have nothing serious yet there was a nagging doubt that something was not right. She started to have an unquestionable thirst, she was wetting herself having previously been potty trained, and was generally miserable.

We had been to the GP at various times and nothing conclusive was found, and then we changed GP. I made an appointment to see him. I had read my friend’s ‘Readers Digest Book of Family Medicine’ (no internet at home in those days!) and between us we agreed that diabetes was a possibility. Anyway, ready with my list of symptoms I took Siobhan and her sister round to our GP for our appointment, our first meeting which was to be life changing for my family and a learning experience for my GP. He listened patiently whilst I described Siobhan’s symptoms and then asked if she would be able to produce a urine sample which she dutifully did. After testing, he calmly said that I should go home and pack my bags ready for hospital admission as she had diabetes.

Incidentally that would be the last time she would produce a urine sample for approximately 15 years, as from that time on she flatly refused to cooperate with that request as part of her way of stamping her feet against this terrible injustice.

So I left the surgery, walked home in a haze to ring my family to let them know what had happened. In those days there were no mobile phones, and I felt as though I was taking part in a film, this was not happening to me and it hurt me to look at my beautiful daughter knowing that something had gone dreadfully wrong. She was broken and I could not mend it for her, what kind of mother was I?Should I have breast fed her for longer? Did she have too much sugar in her diet? Why had this happened, she did not deserve it?

The following week or so is very much a blur; I had Siobhan’s sister to look after so we had a routine of Dad staying at night with Siobhan at the hospital whilst I tried to maintain a routine with her sister. We had to learn how to inject her twice a day and how to check blood sugars using her tiny toes to pinch and squeeze.

The consultant took us into a room one afternoon to tell us officially that she had type 1 diabetes and as I listened I knew he was expecting me to cry but I couldn’t. I thought up until then that it was a big mistake and she would get better but now it was official. All I could sayto break the awkward silence was that she had a birthday party planned in 2 weeks. I think that was my way of saying this was not convenient, and the response was that I could use cream cheese instead of icing on the cake.A nurse gave me a leaflet on the British Diabetic Association and that was that.

We were taught how to count portions of carbohydrate and the dietician worked out how many she could have at each meal then snacks in between .They kept Siobhan in for a few days whilst we got used to injecting her and they also induced a hypo so that we knew what to look out for, quite barbaric looking back but we just accepted it as the right thing to do at the time. Our family came to visit bring lots of diabetic products which we quickly learnt when we were at home were expensive, caused diarrhoea and did not particularly taste nice.

When word got around people tried to say the right thing but inevitable said the wrong thing in my eyes. I was shocked and angry and could not see anything positive in this experience. The fact that choice had been taken away from my daughter made me sad and angry; she could not have a HGV licence, or join the fire brigade. How would she travel, get a job or enjoy life with this terrible illness?

People said things such as:

“It’s a good job you are a nurse”………not, I did not do my training to inject my daughter twice a day, it was not natural

“I could not inject my child”…………….yes you could, otherwise she will die, you do not have a choice

“God chose you to have a diabetic child because he knew you could cope”……………………….well I’m not coping so thanks for the complement but I want my daughter back without the diabetes

“Be grateful you are not in Africa, they do not have insulin there”……………………true but at this moment in time I only care about my daughter so I have no interest in health care systems around the world.

So that was the start of the journey. Our GP saved Siobhan’s life, there were no other diabetic children in the practice and this was the first time he had made the diagnosis in his career so I’m eternally grateful that he listened to me and acted on my instincts. I still thank him with a card on special occasions such as her 21^st birthday and I think it is important to remind the medical profession of the impact of their care.

Today, celebrating her 2oth year of living with diabetes I can reflect on the experience more positively. My daughter has got on with her life despite having diabetes;she has travelled around Europe and worked in America and Paris, experiencing a ‘normal ‘life which I never thought would be possible. That wicked disease has moulded her into a caring and sensitive woman who just gets on with it. She has had relationships and the usual ups and downs of life itself and rarely complains. Her sister has been an integral part of this, where I have been protective and scared; she has often reminded me that she will be fine. They have a good relationship with a lot of love and laughter, and I was lucky that there were no repercussions as I inevitably had to give more attention at times to Siobhan and her condition, but her sister keeps her in check often ribbing about her ‘dysfunctional pancreas’ .

My message to all you parents out there is simple. It will get easier, they will survive and equally important, you will survive.

20 years

2011-04-18T14:52:00.000-07:00

Tomorrow, April 19th, marks 20 years to the day since I was diagnosed with type 1.

I've been putting off thinking about it. I'm pretty diabetes'd out right now. I don't know if I can cope with thinking about it too much - the what ifs, the whys, the if onlys.

I deal pretty well with it most of the time. I've worked out that on average, I have 2 'moments' a year - which usually end up with me in tears in my bed watching one of my favourite films in an attempt to distract myself. A bit like Joe Solo's diabetes duvet days. Inevitably, after a couple of hours, I pull myself together, I get my head back on straight, and life continues (and after all the awful news stories this week, I am glad that I have that life to continue).

I spent yesterday at the London marathon, cheering on the JDRF runners. All 150something of them, they were amazing. But the turning moment of my day was around 10am, when a lady came up to me and asked if I had a spare JDRF tshirt. I happily dug one out a box as she said, "my friend is running in memory of my daughter."

And I nearly burst into tears there. Because there should be no 'in memories' (because god forbid, that could be words that pass my mum's lips one day). There should be no family losing a member to type 1. This is why we need the cure so badly.

And this is why tomorrow, I am going to raise a toast to myself, for 20 years and still winning. The battle will never be over, but I am winning it. I'm pretty tired of the battle now though, to tell you the truth.

But the MAIN reason I came to post today was to ask that tomorrow, you read an extra special post I'm going to put up. A while ago, I asked my mum if she would write a blog post about the day I was diagnosed. At first she politely said no, that it would be too upsetting. I persisted in my usual manner, and I am so proud to be able to put up her post tomorrow. She has written it so well, and I was in floods of tears reading it. I'm also going to ask something really cheeky: please, if you read it, will you retweet/share it/link to it on whatever social media platform you use? I really want as many people to read it so they can understand why we need a cure so badly.

Thanks. I'll blog later this week. I need to get my head around all the emotions I'm feeling to do with 20 years. I know so many people that are hitting way past that mark, but this is the first 'big' number I've reached and noticed.

The D community, offline

2011-04-16T12:13:00.000-07:00

There's nothing I like better than a good old meet up with other people who are pancreatically challenged.

Last Saturday was the 3 year birthday of Circle D, a support group for people living with diabetes in Kent, England. The day was a typical d meet up: in a pub, lots of light drinking, food, and chatting for hours and hours and hours. Lots of people also came from the Diabetes Support forums. All photos are courtesy of Shelley who organised the day!

The arts & crafts corner went down well!

Our two 'naked chefs' - John made ginger & orange chocolate cake
and Lucian made New York cheesecake

Shelley was chief of D police

Cheers Circle D!

In the tube station on our way home; approx 11.30pm

It was great to see so many people - lots of old and new faces. A big wave to Andrew & little Frank, who celebrated his 4 and 3/4 birthday with us ;)

Today I got to see more lovely d people, this time in the form of 3 mums from the Children With Diabetes UK emailing list. We spent the day in Brighton, eating lots and chatting loads. What more could I want?!

(well, to tell the truth I could have done with nutritional information instead of guessing it - I have been high ever since!)

Officially pumping Animas 2020

2011-04-12T08:18:00.000-07:00

Last week, I travelled back to my hospital (thank goodness for flexitime at work!) to pick up my new pump. Things have moved fast over the past few weeks, with funding being confirmed, my pump being ordered the next day, and me collecting it about a week later.

I'm still adjusting to wear it. I've worn a Medtronic for the last 6 months and I could operate that with my eyes shut. Having a new pump, as easy as it is to use, is making me much more aware of what I'm doing with it! I have to think about each time I push a button, as I'm not totally familiar with it just yet.

I didn't get much training from my health care team on how to use the pump, so a lot of things I'm discovering slowly. It took me a week to work out how to get the clip off (confession: I had to be shown). I only discovered the bolus button 2 days ago! Perhaps if I'd read the instruction manual thoroughly I would have found these things earlier, but I've always been more of a button pusher than a page turner when it comes to new gadgets!

Sun sun sun & thankgod for the DOC

2011-03-28T15:26:00.000-07:00

One of the positives of having type 1 has been discovering the type 1 community, both online and offline.

Offline, I have made some amazing friends. Friends who have leapt into my life and spun it around, making me very happy! I've become really close with a few of them in particular, and one of the girls and I decided that we should go on holiday this year.

So, at the end of May, my good friend N and I will be heading off to the beautiful coast of Croatia, where we will spend 9 days exploring the local area, spending time on the beach, drinking LOTS of cocktails - all whilst doing this with type 1 :) I'm a tad apprehensive as it's my first holiday since pumping but I know everything will be fine!

The place we are going to stay at is like a little apartment - with our own kitchen and living room. I can't wait! It's supposed to be really warm then and I cannot wait to get a bit of Vitamin D. I burn quickly, so there won't be any sunbathing or anything for us, but a day by the sea is a definite! It also looks like we can take a boat out to some of the islands just off the coast, and maybe even head over the border into Bosnia.

Online, the DOC is a literal lifesaver. I got an email on the insulin pumping emailing list asking if anyone in London could meet a fellow type 1 from America in London on business. Her business trip had been extended by a week without warning and she was running low on insulin. I immediately arranged to drop by some insulin and pump supplies, and we're meeting up on Wednesday for breakfast! DOC goes international :)

4th April!

2011-03-24T06:57:00.000-07:00

On Friday, I received confirmation that I have secured NHS funding for an insulin pump and the associated supplies for that.

I ummed and ahhed over which pump to go with for a long time. Up until October last year, at the Friends for Life conference, I had only ever 'met' Medtronic pumps. There, I got the chance to see the other pumps on the market, and was really taken by the Animas 2020.

I have been using a Medtronic 512 for the past 6 months; I borrow it from my hospital. I like the Medtronic pump. It is so easy to use, and has my favourite button ever: the bolus button! It also has the feature of using the 'up' arrow button to easy bolus.

However, when it boiled down to it, I realised that I had been won over by the Animas. I have been in touch with them over the last few weeks, asking questions about the 2020 and the upgrade system they are offering (if you have a 2020 with a warranty starting AFTER 01/03/11, you are eligible to upgrade, for free, to the new Animas pump when it is on the market). They have been extremely helpful and prompt in responding to all my queries.

I got an email from them this morning, confirming my hospital has ordered a pump and supplies. On Monday April 4th, I will be hooked up to a black Animas 2020, and I just can't wait!

One thing

2011-03-18T18:27:00.000-07:00

The one thing you can guarantee that we people living with type 1 have in common with each other?

We hate it. Sure, we'll tell you that it's fine, everything is good, no need for concern. But we hate it. There's nothing more all of us would like than to return it to its sender.

Despite that, we're positive. If we sat there hating all day, we'd never get anywhere. We'd never move on. I think it shows great strength in all of us that we have something that could so easily consume us, yet we find all the positives. We find the stuff that makes life good alongside this stupid condition.

But I really, really hate it.

Itchy cannulas!

2011-03-18T05:36:00.000-07:00

I can't work out why, but the past few days, I have woken up and some part of my body has been itching like mad. 2 days ago it was my stomach; the itchiness woke me up! I've also had itchy arms, legs, etc. I would love to say it's something obvious like a new washing powder, but I haven't changed that recently.

The one thing driving me mad though is Silhouettes. I currently use a lovely purple Medtronic 512 with Sils. Sils are designed to go in at an angle of 20 - 45 degrees, rather than the standard 90 - which means they are great for people lacking fat! (I'm not one of those people but I do get along well with Sils).

But wow - the sticky stuff holding it onto my skin?! It's driving me INSANE. I can feel it all the time - not the cannula, just the sticky bit. I keep shifting myself around in a vain attempt to get rid of the itching but nothing is working!

I've also found that Tegaderm - clear, clingfilm like stuff useful for sticking things to your body (I use it sometimes if I'm not sure how well a set is sticking to me) - is beginning to make me itch.

How do I get around this? The semi-obvious answer to the Sil problem is to whack Tegaderm under it - but I can't! Anyone got any suggestions?

HypoStop!

2011-03-17T09:13:00.000-07:00

When I was young, the first hypo symptom I always got was wobbly legs.

"Mum, I have wobbly legs."

My parents quickly realised this was my way of expressing I was hypo, and would go running for the hypo treatment of choice in those days:

HypoStop! Oh god, I can remember it now. That thick, disgusting gel that taste of pure chemicals. It was absolutely vile (but of course - it did the trick). It's now been rebranded as GlucoGel, and this is the bottle I remember it being in:

I remember the way the top of it used to bash off my gums as my mum spread it around my mouth...it's making me shudder just thinking about it!

How have your hypo treatments changed over the years?

[disclaimer: I haven't been asked or paid to write about GlugoGel by anyone - it was a flashback moment!]

One of those moments

2011-03-14T12:20:00.000-07:00

The thing that people with type 1 are really good at doing is just getting on with it. Is pretending that everything's fine, even when you're 25.5 and feel like you're about to implode. Or you're 2.9 and look fine, but feel like death. We're pretty good at hiding those things. If we stopped every time we went high or low, we'd never move anywhere!

Which is why I think sometimes it's hard to convey to people, especially people who have never met someone with type 1 before, just how rubbish it can be. This evening, for me, has been a perfect example.

I started getting the sweats on the tube. I didn't think much of it (why do I never think too much of it!!) and just assumed that it was...hot, or something? Anyway. Tube and bus ride later, I'm walking through my front door thinking "something is not right, but I shouldn't be hypo!" Answer? 2.9. An hour before I had been 7.7!

Awesome.

Not.

I was still boiling hot and sweaty, so the obvious answer? Take your clothes off! Which is how I found myself sat in my underwear, clutching my apple lucozade, in the middle of my bedroom floor.

It reminded me that hypos make us weak and vulnerable. That even though they are generally short, they are terrifying. That they strip us of our very basic function: the fuel we need to think and move and be!

I've been asked to give a speech at the North East Diabetes Symposium in May, focusing on the transition from paediatric to adult care. I think this is something that really needs to be addressed: yes, we may be adults, we may be grown up with jobs and cars and houses and children of our own, but hypos do not 'grow up'. They do not make us less vulnerable. We don't have a parent to come and sort us out; we have to deal with it ourselves. Thankfully, lots of us have partners, husbands, wives, friends, etc that we can rely on in an emergency - but when you find yourself hypo on the tube, there's noone but yourself to rely on.

"It would be okay."

2011-03-08T13:42:00.000-08:00

Last weekend, I decided at the last minute to get a train back to where I grew up, and spend a night back at my mum's house. I got a train (well, there were engineering works, so I ended up on a train to a small town, a coach from there to another small town, and another train to my home city!) there, so my mum met me in town.

We had lunch at Nando's, which provided a good chance to catch up and share all our news. We had plenty to tell each other! My mum and I get along so, so well now - since I've moved out of home, our relationship has totally transformed, and I can't begin to explain how brilliant I think she is. Maybe it's having responsibilities of my own (ie paying rent, bills, working full time) and appreciating how hard she has worked for me and my sister all those years. Whatever the reason, we are like two peas in a pod (throw my sister in the pot, and we're 3 peas in a pod) and I just love it.

Anyway - the best news, which I found out the day it happened, is that my mum is engaged! She has been with her partner for over 10 years, and we'd all given up any hope he would propose. I'm so excited for her! My sister and I will be bridesmaids, which is ridiculously exciting!

"Siobhan, what ARE you doing, and why
does it involve poking me in the face?!"

Amongst all the chatter we had that day, we spoke a little about my sister and type 1 diabetes. How we obviously hope she never ever develops it, how she has agreed to be part of a research study (looking at siblings and genes etc), the fact she never complained as a child when I had to take up the attention of my parents because of diabetes. I was diagnosed when she was 3 months old, so she has literally never known a world in which I'm not diabetic (just the same as I don't remember being non-diabetic).

My sister recently told my mum that if she were to ever be diagnosed with type 1, "it would be okay - I would just get on and deal with it, like Siobhan does". That actually made me catch my breath; I feel so amazed that I have been able to give her that positive way of thinking.

God forbid it ever happened...but I know she would be okay.

New job = basal testing! And jelly, lots of jelly.

2011-02-01T13:44:00.000-08:00

I started my new job 2 days ago, which for me means only one thing: basal testing. Lots of it. I'm giving myself this week to see if I can spot any general patterns, and then next week I'll commence the dreaded testing.

Basal testing is a way to ensure I have my basal (background) insulin set to the right amount. I do this by fasting (not eating) for 4 hours, and making sure I have no 'active' insulin on board (insulin is generally active for about 4 hours). This means I should, in theory, have nothing going around my system except the background insulin. And by monitoring my blood glucose levels closely (I will do hourly - some choose to do more/less frequently) I should see if that insulin is running my levels too high, low - or in a perfect world they would keep me stable.

I will only test for a few hours at a time - probably 4, at max. It means I will be starving as by the end I will have been without food for 8 hours, whilst doing my normal daily routine! If some of those hours fall during the night - for example, if I wanted to test my basal from 8am - 12pm, I would just skip breakfast.

But this Siobhan gets grumpy without food!! I have heard that sugar free jelly (which I have been making lots of recently) is fine to use during basal testing - can anyone confirm/deny this? I love jelly and would be happy to eat some to put off the hunger!!

I've just googled 'wobbly jelly' to try and find a picture to attach to this post - who knew people make jelly in the shape of landmarks?!

Daily Mail article

London

2011-01-28T04:58:00.000-08:00

I've arrived! It's taken me 2 days to get the internet working but I'm glad to be back online.

Last night, on my second day here, I attended a meet up of North London Young Diabetics. There were 7 of us in total, and we did what all d meet ups seem to be about - eating and drinking! We met at 6pm and left about 9, all of us going our various ways on the tube and bus. It was a lovely evening and no doubt there will be another meet soon.

London, for me, is a big, scary city. I've never lived anywhere this big before! It's also quite exciting, but for the most part all I am at the moment is very nervous about it all.

On Tuesday, I travelled to Southampton to take part in a day's training with JDRF and INPUT. I have quite a lot to say about it, but not much energy right now, so I'll get a proper update on that out soon!

Taxi drivers and visits to A&E

2011-01-19T14:14:00.000-08:00

Last night I had a phone call from a friend.

"I've been low all afternoon, and I'm throwing up. Should I go to A&E?"

YES YES YES was my answer to that. "I'll meet you there."

I threw all my crap in my bag and rang out the door. I grabbed some cartons of OJ on the way 'just in case'.

I discovered the bus had left a few minutes before and it would be over 30 minutes wait; I decided to run the first part of the journey (I would have had to catch 2 buses to the hospital). Before doing that I tested:

3.3. "S**t!" Down went the first OJ carton, and a phone call to a taxi rank. The taxi arrived shortly and the taxi driver asked me why I was going to A&E.

"My friend is a type 1 diabetic, he has a low blood sugar level but is throwing up so he can't get his blood sugar levels up - A&E is the safest place for him to be."

verynicetaximan: "Don't they treat you kids with tablets these days, you don't have injections do you?"

Cue a lengthy, slightly hypo discussion about the difference between type 1 and type 2, the medications we can use, and my pump! I even showed him my cannula and the pump itself. I'll give him his due - he took what seemed to be a genuine interest and seemed to keep up with the conversation.

To cut a long story short, after an injection of Metoclopromide - dude was fine. Levels stayed in the 9s and 10s and it's all over now from what I hear.

Motto? Even if things are probably going to turn out okay, when you have type 1 in the frame, there's a big chance they might not. Quote of the day came from the ridiculously stuck up doctor in A&E:

"We see millions of people like you everyday - you have norovirus."
me: "No, you don't see millions of him. He has type 1 diabetes."

edited to clarify: her point was that he was no one special and should go home - my point was that with type 1, he was NOT like everyone else and needed to be taken seriously!

Living with type 1, and living alone with type 1

2011-01-14T14:42:00.000-08:00

I mentioned earlier this week that I had had some bad hypos, including a particularly bad night time hypo. I'm not sure if I've publicly stated before, but as I rent a room in a shared house and don't actually know any of the other people living here, I consider myself to live alone - as I do not know I could rely on the others in an emergency, nor do I know them well enough to want to place my life in their hands.

Which means I am pretty self reliant when it comes to managing what could become emergency situations overnight. I've taken steps, that I have learnt over the years, to ensure I can help myself if I need to.

- always, always, always keep BG testing kit within arm's reach when sleeping. I sleep with my kit in my bed, yo. That way I know exactly where it is and where I need to reach for to grab it.
- always, always, always keep fast acting carbs within arm's reach. Plenty of them. And a choice of them - I can have a hypo where I become very 'picky' over what I want to eat or drink, so I usually have a choice of glucose tablets, juice or Lucozade.
- I have a plan with my mum, if I got to a point where I could no longer help myself. I would ring her and she would get an ambulance sent to me. When I make my move to London, I will also be giving her the numbers of some friends and family in London so she could get in touch with them.

Now, these might not be rocket science or fancy. They aren't complex or time consuming. These few rules I have set with myself (I never sleep without my kit, glucose or a plan) ensure that I can 'cope' with having a hypo over night.

Why do I have them there? Because the horrible truth is, there are eventualities I can barely even begin to think about when it comes to night-time hypos. There are awful stories that don't take much googling to find, about low blood glucose levels over night, and how they end up. Back at the Friends for Life UK 2010 conference, Jeff Hitchcock spoke about why he let his daughter move in with her boyfriend when she was fairly young. He spoke about him never wanting her to sleep alone, in case something happened. We all know what that 'something' is - dead in bed syndrome.

Age 22, I still ring my mum to tell her about the bad hypos I have. My rule number 4: always, always, always know where your support lies, and utilise it.

Video

2011-01-13T10:45:00.000-08:00

A few months ago I was interviewed by Birmingham Children's Hospital on living with, and growing up with, type 1. Please excuse my lovely Birmingham accent and the fact I sound so apathetic! How embarrassing!!

Link: http://www.youtube.com/watch?v=ZmG7j-i-Oes

Hypo hamsters

2011-01-11T10:54:00.000-08:00

I mentioned in my last post that I've been experiencing more hypos due to having my cannula in my thigh. The problem is almost sorted (working on 50% temp basals and finding out when I need to reduce it even more).

The first night after the cannula change I had one of the worst hypos I've ever had. I went down to 2.4 which really isn't all that low. I mean, it's very low - but I've been lower. This hypo though gave me some of the strongest symptoms I've ever had.

These included

waking up unable to breathe properly
standing up to go to the toilet, and falling into my wall
almost falling off the toilet (amusing imagery but scary at the time)
shaking like a leaf in a hurricane
total confusion; writing on a friend's facebook wall asking if I could use ice cream as a hypo treatment (and getting international replies!)
insane desire to just shut my eyes and go to sleep to get rid of all these feelings - as a child, the one mantra my mum had when I was hypo was 'do NOT go to sleep'
and the weirdest one: my right eyesight went totally...weird. It was just like looking through a kaleidoscope - as if my eyesight had been chopped up into squares and those squares had moved around so the picture was totally wrong. This lasted for a good 30 mins or so and was really quite frightening to be honest; it scared me thinking about what a low blood glucose can do to the body

After about an hour, I was in good numbers and went back to sleep. I woke up slightly out of range - 10.1 if I remember correctly! - but seriously, with the way I'm known to rebound, I'm happy with a 10.1 after a 2.4.

I called my mum later - we're very close and she's the first person I ring after a bad hypo. I told her about the hypo and she said two things to me - one a bit eerie, and the other just ridiculous.

"I was thinking about you hypoing overnight last night. And for some reason, I took my mobile phone to bed with me, just in case you called me."

- how did she know I had nearly called her when I first tested at 2.4 and was unsure I could treat this myself? She amazes me. I told her she's a bit like a hypo dog...to which she replied the funniest thing I've heard in a while.

Mum: "well, because you can't have a dog [I rent my room!] you should have...a hypo hamster!"

Me: "and what would the hamster do when I go low?!"

Mum: "it would run faster around its wheel!"

I was in tears laughing at this comment. I can just picture a poor little hamster running around the wheel every time I went low! Honestly!

LipohyperWHAT? Experiments, what?

2011-01-08T10:51:00.000-08:00

Lipohypertrophy - lumpy/fatty areas caused by injecting insulin repeatedly into the same area (my definition). For over 15 years I injected into my thighs twice daily, meaning I have 2 really nice raised areas. I haven't injected into them for years, literally, and they are still raised, still there.

I usually use my middle areas for my cannulas - tummy, sides, basically anything I can reach easily and is comfortable. I realised I'd been doing this for 4 months straight and everything was starting to look...a bit dot-to-dot.

Yesterday I tried a new site: the lovely raised areas, aka lipohypertrophy, on my thighs. I was really nervous about it - I hadn't tried this site before, I was unsure how much pressure I'd need to apply to break the skin with the inserting needle (I insert my Sils manually), so on so forth.

And what have I found? Since siting the cannula there, I have been hypo several times. I've only just clocked onto it - but since changing, I have been hypo 5 times, in around 30 hours.

My question is now: what do I do with this info? When siting cannulas in my thigh/lipohypertrophy again, should I use a continuously lowered basal, say dropping 5 or 10% at a time? Is it a fluke, a one off? I need to change cannula tomorrow - should I put it in roughly the same area for experimental purposes (I'm a good site rotator normally) and see if I continue to hypo? I have 5 days of the same shifts (7am - 3pm) so it would be a good time to experiment.

Any thoughts or advice would be greatly appreciated! I had always believed/been told that lipohypertrophy would be more likely to send me high due to lack of insulin absorption...the human body is so weird.

In the new year...

2011-01-01T15:33:00.000-08:00

I'm hoping 2011 will be a very positive new year. I have my new job going to start in a month or so. I'm hoping to shrug off a little of this burnout.

I've just read an incredibly inspiring blog - Naturally Sweet - about Hayley, a 16 year old girl with type 1. Her blog says it all really. But reading it has started to make things move within - the thought of running support groups for children. Of starting a diabetes awareness foundation. Of summer camp! I need to mull it over, but I feel totally 'pulled' by these thoughts.

2011 is also the year for me to work on my (total lack of) confidence issues. I need to get all of that out my system else I will never move forward!

Pick your battles.

2010-12-20T15:48:00.000-08:00

Everyone living with type 1 diabetes, or indeed another other chronic condition, has coping techniques. I've spoken about this a couple of times (here and here). I think we'd all go mad if we didn't, even if we don't realise it!

One of the best ones I have, for me, is one I've been thinking about a lot recently. I'm kind of at a stage with my diabetes where I am...well, burning out. The desire to take excellent care of myself is there, but the motivation is not. That's not to say I am sitting here letting my body do whatever the hell it likes - I am still taking *good* care of myself - but I know I could be doing a lot better. This has caused a lot of negative feelings towards myself, I am berating myself for something I need to be doing. Which in turn makes me feel even worse.

I am really trying to take active steps in regaining my motivation. I think, with the switch to pumping, everything has become a bit 'much' - I need to readjust the focus of all of this. The huge battle I have faced with getting access to an insulin pump, and gaining funding for my very own pump, has used up huge amounts of my mental energy, and has dug into my reserves. I think this has a lot to do with how I am feeling now. I need to recharge my batteries.

As a child, I apparently went to battle armed with a fork
& a Christmas cracker hat

So! The thing I have been reminding myself of: pick your battles.

This is to remind myself that as long as I have done what I can to keep my BG levels in range, I do not need to beat myself up if they go back out again. If I hypo, it is not the end of the world. If I cannot get my BG levels below 10, there is something I need to look at - I don't need to give myself a hard time for it. I need to deal with the problem, and move on. If it could have been avoided, I'll usually sigh at myself, tell myself to do better, then carry on. I cannot battle everything I encounter in D-land. I just do not have the energy to go to battle all the time. I need all that precious energy for motivation!

It's a frame of mind that I have had to force myself into. I find it helps. Some people might find it too cheerful or jolly or the like, I appreciate that. I am a person with a chronic illness and I have the same amount of mental energy as someone without - so if I can find a way to conserve that mental energy, to stop it going on the diabetes, I'll do it.

As I say, I have found this technique has helped me, a lot actually. I'd encourage everyone to give it a try. Instead of burning precious energy on this stupid condition, pick yourself up and move on. Don't fight every battle - it just isn't worth it. Pick the ones that need fighting, and leave the rest for another day.

Speak of the devil

2010-12-19T13:10:00.000-08:00

2 days ago, I wrote about the way I am still trying to get 'up to date' with thinking through the technology I have available to me.

Today? I'm coughing, sneezing, feeling all stuffy, and my sinuses are hurting.

So on goes the 140% temp basal, and small prayers that I will get through this okay!

Changing old habits?

2010-12-17T13:07:00.000-08:00

...or rather, old ways of thinking.

With all this cold weather, I'm reading lots of stories of adults and children with type 1 getting ill. The majority of people with type 1 will, when ill, experience high blood glucose levels. I'm not a scientist and can't explain why it happens, but it does, and it's incredibly frustrating when it does happen.

I haven't been ill in any way so far since being on the pump. I'm yet to get a cold or a bug or anything like that. Touch wood it stays that way. I've had a few 'off' days, where I've been a bit under the weather or felt generally ill, but nothing that's knocked me back, yet.

But my old school ways of thinking has made me question myself a lot recently.

I was diagnosed in 1991, almost 20 years ago. I was on mixed insulin for far too long (until 2006, at my own discretion). Being on this regime for so long meant that I got to know the way things happened for me. One of these things being illness.

When on mixed insulin, with no access to fast acting insulin (which some families did have access to, I was one of the ones who did not), the basics of sick day management went as follows:

- your BG levels will shoot up
- they will stay up
- drink lots and check for ketones if you get worried (ketones are produced when the body has no insulin to tuck glucose away into your cells - thus the body has no fuel source, and breaks down fat to use as fuel, then acid known as ketones are produced and essentially poisons the blood, to put it in layman's terms)

I find myself, today, in 2010 with my pump and my awesome testing kit and my fast acting insulin on tap, still sometimes floating back to this way of thinking. If I'm getting ill (I've had a few days when I've had high levels and thought I was becoming ill - only for it to fizzle out into nothing) I tend to just sit there being 'okay' with higher numbers. I accept them as part of the diabetes deal - only the obvious thing is, I can do something about them! I won't let myself sit in the teens, but if I see more 8s/9s/10s/11s than I would like, I just kind of sit back and let it happen rather than setting a temporary basal (giving myself more insulin per hour than normal).

I'm trying to put my thoughts into concise words. I suppose what I am saying is I am so, so used to the old school ways of thinking that sometimes I literally forget that I have the technologies to do something about these situations! When I'm ill, I accept higher numbers as part and parcel of being ill.

I am trying to get into the habit of questions myself on a more regular basis - am I doing everything I can right at this moment in time to get my BG levels in range? Would a temporary basal be useful right now?

In other news, I'm planning to do some basal testing over the next few days. What fun that will be!

James!

2010-12-13T15:32:00.000-08:00

I have spent the past few months quietly, excitedly anticipating seeing my favourite band: James (wiki page HERE).

I'd happily have the lead singer's babies:

Tim Booth, looking as hot as ever - yes he is 50!

They were mostly famous in the 90s and sang songs such as Sit Down (that video is live from last night!), Sometimes and Laid. My dad has been a fan of them since day 1 and thus I grew up listening to them. They broke up in 2001 but reformed in 2007 and we have seen them at every UK tour since then (sometimes twice on a tour if we can make it).

I had so hoped I could write this post without mentioning diabetes. But naturally - diabetes had other ideas.

Before we went into the soundcheck - we had purchased extra tickets to see the soundcheck and have a question & answer session with them - I checked and found I was 16.8. I had changed my set about 5 hours previous to this, and had hypo'd in the mean time - so I assumed the set had worked. But such is life.

I gave a correction via the pump, waited an hour - then discovered I was 22.3. I rummaged around in my bag only to discover my spare set had managed to go AWOL. Thankfully I had my pen with me, so I was able to correct down - but I have to say, it took what felt like hours and hours to come down. I'm guessing that's a combination of ketones and insulin resistance. However, the show must go on!

During the soundcheck, which was absolutely amazing, I was feeling incredibly sick, thirsty, headachey, etc. I really want to keep this post focused on James though so I want to tell you all about it!

The soundcheck and q&a were very informal, there was only about 50 people there, so in between songs they took questions. My dad asked about a song, Five Oh - he wanted to know why it was called Five Oh and the band explained that when they were jamming that song back in the day, it didn't have a name but they needed to remember it and apparently it reminded them of the old TV show Hawaii Five-O, so the name stuck!

As I had (~~literally~~) run to the front/centre of the stage, I also asked a question about the huge anthology thing they are releasing next year and found out it's going to be delayed by over 6 months! Very sad - I had planned to buy it for my dad's 50th in Feb! Oh well.

After that had finished Tim came down from the stage to sign stuff and I got my pass signed. I asked him about the 5 Rhythms dance class he goes to in Brighton (he lives in the same city as me yayyy) and he told me I should go to them. So I think I might!

We then headed back out to get something to eat. I was still 22+ and so just had some fish (I took the batter off). Because of our VIP passes we were let into the main gig first, so we got good standing room - to the right of the stage, but at the very front up against the barrier!

Here's the token diabetes rant - the venue had run out of diet pepsi on tap. I explained politely that I was type 1 diabetic, could not drink anything else they had on offer - then spotted that they had pepsi max in bottle. I asked that due to the circumstances would they be able to sell it to me at the same price as the tap pepsi. The young girl behind the bar stroppily told me it wasn't her problem and that I would just have to pay the full price. I was getting very hacked off with her attitude but my dad told me to chill and go and get somewhere to stand. However, when he came back with the drinks I told him I felt strongly I wanted to speak to a manager (the bar girl had denied there was a manager around). The manager was very empathetic, said he was sorry he did not have anything else I could drink and that there was no excuse for bad manners and therefore he would speak to the bar girl. I explained that whilst I did not want to cause a fuss, I just wanted the same opportunity to buy the same priced drinks as everyone else in the room. He then offered to get me another drink for free - he offered me OJ to begin with which I politely explained I could not drink due to the sugar content. He happily passed me another bottle of pepsi max and I left it, feeling very satisfied that he had taken my concerns into account.

(let's have another picture of Tim Booth to make us feel better)

But the GIG! Oh my goodness, the guys were on TOP FORM last night. I've seen them several times now and this was definitely my top gig I think. They played a brilliant variety of songs, ranging from their REALLY old stuff right up to stuff from the latest album. My favourites were Lost A Friend (again, a video from last night's show - so rarely performed he had to have the lyrics on paper!) and Johnny Yen.

Why was Johnny Yen a favourite?! Well - Tim climbed down from the stage, and asked my dad to hold his hand as he stood on the barrier in front of us!! He looked down at me for a while whilst he sang, I could straight up his shirt and THEN he climbed over the barrier aka slid down in between me and the barrier! I practically cuddled him! He headed into the crowd and did some crazy dancing before coming back onto stage.

When I read twitter this morning, Tim had tweeted that the band felt like they had blown it. I 100% disgaree with that! The energy in the room was brilliant. The venue itself - the O2 Academy, Birmingham, isn't very well laid out and there were a few issues with bass volume (I lost most of my voice and my hearing due to standing too close to the speakers).

I'm afraid I'm one of those fans who, even if the gig did go horribly wrong, would LOVE it. Their music has been such an inspiration for many years, such a comfort. Often it's their lyrics I turn to when in a crappy mood - especially with the diabetes/living with a chronic condition thing.

By the end of the gig, I was sitting in the 11s/12s, feeling much much better. Due to the heat and the massive drop in BG level over the course of the gig, I had felt quite faint at some points and got in a bit of a panic that I would actually faint - thankfully I didn't!

The icing on the cake was my persistence in geting a setlist. At first we were told noone would get one. Then some got handed out to a different part of the small crowd that remained. I finally gave up and went to get my coat from the cloakroom - only to eye up one of the stage crew handing a security guard the last setlist! I ran over shouting "ME ME ME ME ME!" and got it off him!

So thanks to my dad, who paid for my tickets (to the gig and the soundcheck), who paid for a taxi home, bought me an official tshirt (we normally just buy them cheaply outside!!) and bought all the drinks. Also...a huge thanks to James for being, in my eyes, the coolest band around.

Good days and bad days

2010-12-06T11:49:00.000-08:00

I've just read Mike's latest blog over at The Type 1 Game. In summary, it describes the horrific low his daughter had, and the ensuing rollercoaster of blood glucose levels - and yet when asked how her weekend was, Adele said she'd had an 'awesome' weekend.

It kind of got me thinking a bit about how much I bring diabetes into my 'bigger picture' - such as a question like, how was your weekend? My immediate thoughts are never with diabetes. I think it's because it is so ingrained into me, that I just don't let the highs and the lows register on my radar on the grander scheme of things.

As much as the highs and the lows affect me at the time - no matter how upset I get, or how crabby I end up feeling - they are such a part of routine that I just don't register them. At the time of course I do - but I soon forget them.

Is that a good thing? In my opinion it is. I'm able to deal with things in the moment (or hour or hours) but I'm also able to forget them quickly enough. I think it's a coping mechanism, a way my mind lets me carry on with things despite the proverbial roller coaster it is riding.

Ouch!

2010-12-05T12:14:00.000-08:00

About a week ago, I decided to try a new area for my cannula - I went for the top of my right thigh. I wasn't sure of exactly the best place to put it, so I picked a bit that felt nice and 'fleshy' (for want of a better word).

It went in fine, but a few hours later it started to get tender. I figured this was because it was the first time I'd used that area, so I persisted with it - my levels were fine.

The following morning, after sleeping on it (I toss and turn in my sleep, so even if I fell asleep on the other side, I knew I'd end up lying on it at some point - I'm a side sleeper), it was red, hot and sore to touch. Safe to say I changed it and it soon settled down.

I think perhaps it was a little too close to muscle. I'm not sure. But I'll definitely be sticking to my 'really fleshy' areas, just to be on the safe side!

The battle? Half won!

2010-12-02T09:03:00.000-08:00

Last week, I saw my consultant. I had received a very mysterious email from my DSN the week before saying the consultant was 'keen' to see me to discuss pump funding. I was very impatient and excited to see him after hearing that!

I had travelled from Brighton to Birmingham a couple of days before, and due to travel back after the appointment. Tom had come up to Birmingham on the day to be at the appointment with me...but before that?

We hit CADBURY WORLD!

Now Cadbury World provides a LOT of childhood memories for me. The big 'CADBURY' on the top of that building? You can see it from the top of my mum's road (aka where I spent years living!). I went on several school trips there. Over the years it has expanded, changed, developed, and had loads of cool features added to it.

Just a hint: on Thursdays, it offers 2-for-1 tickets; you just have to print out a voucher and voila! 2 tickets for the price of one.

Unfortunately, being a school day, it was rammed with school children and we couldn't get away from them the whole time. Definitely took away from the visit, but certainly didn't ruin it. It did mean we missed out on writing our names in chocolate though, there were so many kids we didn't even get a look in. Oh well!

After that we made a pit stop for some food and carried onto the hospital. Of course, being this uber important appointment...naturally the clinic was running behind by over 90 minutes! I sat there, biting my nails, twitching my legs, feeling very hypo (I wasn't though! It was just nerves).

The eye screening lady tried to get me to have my eyes done before I saw the consultant. I pointed out that I normally like to be able to see the consultant...to which she replied "well, do you ACTUALLY need to be able to SEE him?!" at which point I firmly told her I did NOT want my eyes testing right before I saw him and I would have it done after the appointment, which suited her fine. Honestly. Yeah, I've travelled all this way and spent 90 minutes waiting just so I can see a blurry face...not!

When I finally got in to see the consultant, he didn't waffle on too much - and told me that YES, he is going to request funding for a pump for me!

He also:

- had a go at me for continuing to use my pump after the trial had 'finished'
- told me he had no idea what happens now, he will just write the letter
- had clearly been listening to my DSN, who believes I test far too often (in comparison to some, I'm a relatively light tester; this is why sometimes I have to filter the info I send to my team, because I get berated for testing 'too much' - too much, in their opinion, is more than 4 times a day, just so we're clear on that one!) as he quizzed me on how often I test. I'm afraid to say I gave him the answer he wanted to hear, and told him pre meal, waking, and before bed.
- poked around my feet and said they were fine

So...as soon as Brighton PCT send through the funding, I will officially be a pumper! Remember all that time ago, in July, when I said I had my heart set on a Medtronic Veo (purple)? After seeing the Animas pumps at Friends for Life UK 2010 I am really torn. There are features I like on both of them.

Medtronic Veo:
+ purple!!
+ smallest basal AND bolus rates around
+ the bolus button, the most used button on my pump
+ about as easy to use as you can get
~ has CGM connectivity; as an adult in the UK, this is unlikely to ever be a possibility, but I like that the possibility exists
- can't see basal history (on the 512 at least)
- not waterproof (I hear some of you going "ppfffftttt why would you care?!" well ladies and gents, water sports are soon to be appearing semi regularly in my life, as I train for a fundraising event next year!)
- I seem to keep running into problems with the sets. I realise this is just bad luck, but you know when something niggles in your mind...well, this is a niggling thing.

Animas 2020:
+ has colours I would be happy to wear (can't beat purple though!)
+ smallest basal rates going
+ easy to use and navigate
+ 500 item food store; not sure how much I would use it, but sounds like a useful feature
+ I liked the aesthetics of the pump; small, lightweight, not too clunky
+ waterproof
+ more basal rate profiles (ie day off, work, weekend, etc)
- its bolus increments could be smaller, ala the Medtronic
- no CGM compatibility; again a moot point really as I won't ever get funding and am incredibly unlikely to be able to self fund one (must.start.playing.lottery)

Until I hear from the PCT, it's not something I really have to knuckle down and think about. If anyone
has any thoughts, opinions, etc - please let me know! I'm always up for hearing what you think.

Night time testing - keeping your eye on the target

2010-11-17T17:19:00.000-08:00

If you haven't heard of Olly Double, I highly recommend you go and buy his DVD. Olly is a British comedian/lecturer - and also has 2 sons with type 1. He did some stand up comedy at this year's Friends for Life UK which had the whole audience in stitches (a clip of it can be seen here).

Olly recently wrote a great post for Diabetes UK, regarding night time testing. The cause for debate/nomination for 'person who needs a slap' comes from the following commenter:

I am not aware of the age of the children you have i am sure i checked your article but could not find them. However after reading it i do feel a sense a paranoia within your household. Why keep testing, surely if the levels are good during the day, then it is more common then not that the levels remain good through the night. I assume you are using long acting insulin, and as long as they have some supper that is usually enought. You must be aware that being permently tired is no good for you or your children and sleep is vital to function correctly. You must also be aware that everyone needs to learn to be a bit independent and learn how to look after their condition to a degree and not allow anyone with diabetes to live their lives by it but to live a life and control it so as not impeed the quality of life. Believe me i have seen many a diabetic so caught up with timing of meals/injections etc that life becomes dominated by the condition. Life is for living whatever medical condition you have. I suggest listening to your doctors and relax a bit, and ease up on testing during the night. (I have had diabetes for over 25 years, have three kids of my own and live with them on my own)!

Several of the parents from the CWD UK emailing list have posted replies detailing everything I could feel the need to say. But it got me thinking - and after reading Tom's post, I too wanted to pipe up a little about why I test during the night and why I feel it is important.

I'm going to go right out there to begin with and say that I am very lucky and have relatively stable glucose levels. They are by no means perfect, but I am fortunate not to suffer with huge swings in BG level, or with my BG levels randomly rising or falling on a regular basis (it happens - just not very often). With me, there is usually an explanation as to why my levels are where they are. Not all the time - but usually.

However, I am still a fan of night time testing. For anyone unaware, Tom is my partner - so we quite often set the alarm for 3am and do a test. Tom does more night time tests that I as he is prone to swinging levels. As he quotes in his post - I am very easily woken and so will usually be up and awake when he is testing even if I didn't mean to be!

So why bother testing at 3am? My aim is to keep my BG levels between 4 and 7mmol/l, at all times. That's my aim. If my BG levels were shooting arrows, I usually land in the yellow/red/blue area. By testing at 3am, I can make sure that my BG levels aren't straying out towards the edge of the target. Some nights I have strayed way off target - usually due to something I have eaten or illness. Other nights I am sitting pretty in the 4 - 7mmol/l range.

But without testing, I can't tell where on the target I am. I'm always going for the bullseye. Some nights I am just not happy with the idea of going from 10pm to 6am without testing...I wouldn't go for 8 hours during the day without testing, so unless I have good reason to think I will be steady all night through (and again - plenty of nights I will go without testing if I have seen in the past few nights I am staying in range all night), I will be setting an alarm, and I will be testing at 3am.

I grew up in the age of bimodal (twice daily) insulin. My parents rarely did night time testing as the insulin kept me very stable overnight (which, having been told that - makes me assume at some point some night time testing was involved to clarify this). However, unlike the above commenter, I am not ignorant enough to sit here and think that technology and diabetes management hasn't changed since I was kid and that everyone is like me and will stay stable through the night. I want to keep my BG levels in range as much as physically possible so that I can write in 50 years and say I still have my eyesight, limbs and kidney function. If that means waking up at 3am most nights to test, I'm there. I am incredibly proactive in my care - however I do not think this means diabetes is 'living' my life as the commenter suggests. Diabetes is just part of me and I'd rather be taking the best care of myself that I can than leaving it to chance (and assuming because I have eaten supper my levels will stay in range all night...!)

The case of the missing carbs

2010-11-17T16:12:00.000-08:00

Yesterday I had such a weird day. I stayed in decent numbers all morning. I had pasta for lunch, and planned to bolus over 2 hours then increase my basal to 150% for 8 hours after that (as suggested by Gary Scheiner).

Except...there was no pasta rise. Not at all. In fact, I went hypo, and stayed hypo (despite fast acting glucose and free carbs) for hours on end. It felt like every hour or so I was shovelling more glucose tabs down my neck. And still, no pasta rise.

What's even weirder? I had pasta again for tea (can you tell I made a huge pasta bake the night before...). I still didn't rise! I went hypo again! I spent most of yesterday after 4pm in the 2s and 3s. I was eating biscuits without bolusing and still dropping like a rock.

...and still no pasta rise, even after 2 lots of pasta that day. According to my meter, at 9.17pm I was 3.6. At 1am, I was 12.7.

So that's where the rise was!

I corrected that 12.7 via the pump (my brain was in no mood to work out active insulin + correction factor). At 6am I had risen to 13.2 and I was feeling pretty grotty. But at least I found the rise! 12 hours after the second lot of pasta...so bizarre not to have had any kind of rise after the first one.

The cog is still in motion, apparently.

2010-11-15T09:32:00.000-08:00

I'm not sure what prompted it, but today I received an email from my DSN Becky saying the consultant is keen to meet with me soon to discuss pump funding.

I can see one of three things happening:

1. he agrees to get funding for me
2. he declines to get funding for me
3. it's just a ploy to get me there and take the trial pump off me

Number 3 would not happen without a real, physically fight and the use of an anaesthetic of some kind...!

Hopefully going to see him either this Thursday or next; I will post as soon as I hear anything!

Yoohoo!

2010-11-08T14:16:00.001-08:00

Guess who I found out now reads my blog?

My nan! Hi Nanny (and Bampy)!

I love the fact that my nan emails me, does text and uses t'interweb regularly. I don't think she's got onto food shopping online, but one step at a time eh?!

Testing: just a snapshot of time.

2010-11-07T15:09:00.000-08:00

I'm a sitter-on-the-fence in regards to CGM. The inaccuracies in the technology make me dislike the concept, but the one underlying and undoubtable feature it offers, from my point of view, is the reassurance it gives.

I don't have access to CGM technology, and when I did have access to it for 5 days, I was still hanging in the air if I liked it or not. What I hear is that the more you use it, the more 'in tune' it becomes with your body, and thus the more accurate the readings are.

Because one of my greatest frustrations with blood glucose testing, that stupid little prick on the edge of my poor fingers that I do time and time again, is that it is only a snapshot of what is happening *right* then. For instance, I'm 5.7 right now which is pretty damn good for pre-bed. But I've been at work - so will I fall a little? I have a decreased basal for the hour after work to allow my body to 'catch up' with itself, if you know what I mean --

but guess what I just checked? I was on the wrong basal pattern all day. It explains a lot...I have 3 basal patterns - day off, early shift, late shift. Yesterday I worked the early shift and must have forgotten to change over to the late shift pattern for today. D'oh.

I guess that means a 3am test to see where I am.

But back to my general point - BG testing only gives you an instant update. The beauty of CGM, so I hear, is that it gives a much wider picture. As I say, I appreciate it isn't 100% accurate and doesn't replace testing - but the overwhelming benefit I found was the reassurance of having some general idea of what the heck my levels were doing.

Sometimes my little brain just can't work out what to do with a BG of 5.7 and having been on the wrong basal and active insulin and having a snack before bed and having a lie in tomorrow and how do you even BEGIN to work that out?!

'How do you do it?'

2010-11-06T14:56:00.000-07:00

I was recently asked by a girl newly diagnosed with type 1 - 'how do you stay so positive with your diabetes?'

The answer: I think I would go blind mad if I didn't. I force myself to remain positive with it - or rather, I force myself not to be negative. We live with this horrible, stupid condition that I hate with every cell of my being and I wish I could get rid of (not just for me, but for everyone living with it).

I've heard Joe Solowiejczyk speak a couple of times now, and I love his attitude of 'it's okay to hate it' - the thing with living with a chronic condition, especially an invisible one such as type one diabetes, is that quite often people think that just because you've had it for a while, you're okay with it, you're getting on okay, it's not affecting you. Problem is - that just isn't true in most cases! Yep, we're 'used' to living with it - but that does not mean, in the words of Joe Solowiejczyk, that I wake up every day thinking 'whoopee! I get to wake up, check my blood glucose, carb count that meal, then wait 2 hours and test again! And then...I do it all over again at lunch!' - it just isn't happening like that.

I think I have an attitude of just getting on with it, and taking each day as it comes. I find a lot of people, and it's easily seen in children, also have this attitude. Living with a condition as unpredictable as type 1 means you have to adapt quickly to whatever your body is throwing at you.

Overall I am quite a positive person in general. I try to find the good in all situations (which winds some people up no end!) - so if I'm going to live with this stupid condition, I'm going to see all the positives I can. I love the diabetes community, and being 'part' of something.

For me, it would be very easy to constantly feel very depressed because of this stupid thing. And I do have my down days - I'm known to throw tubing across the room when that cannula has failed *again*. I have days when I just want to sit down and cry because of the sheer effort of living with a condition that is such hard work, and often doesn't yield great results, no matter how hard you try. I think that's the biggest thing for me - knowing that I will always be fighting this battle, a battle that can only lead by me (but I do have an amazing army of people behind me). Sometimes the weight of that is a lot to carry around.

Everyone has different ways of coping with things, and for me I am always trying to find a balance.

The power of positive thinking.

2010-11-04T15:48:00.000-07:00

I had intended to write a fairly upbeat post today, but today has been overshadowed by several things: a failed set (AGAIN), getting out late from work due to lazy members of staff, having a very painful back and realising that actually, I don't get a lie in tomorrow, I have to be up just as early due to transport issues.

Not a happy bunny :(

3 cannula fails, in a row.

2010-11-03T17:33:00.001-07:00

Saturday morning at Friends for Life, and I was supposed to be going to a talk being given by Gary Scheiner ("Strike the Spike" was the name of the talk).

Except, I'd done a set change that morning and my levels had shot up into the teens despite a 170% temp basal for 2 hours. Tom (who features in some of the photos in my previous posts!) found himself in exactly the same position. We decided to change sets, again, to get things back on track.

I took out my cannula, to find it very bent. Tom took his out and blood squirted everywhere...he'd hit a vein or something! New cannulas in, correction in, off we went.

Only, we didn't. Now, please don't ask me why I didn't correct by pen earlier; truthfully, I don't know. I should have, but I didn't, and I can't answer why I didn't. In a way it just didn't occur to me.

I continued to rise, hitting 19.0 (342). I changed sets, again (so set change #2 of the day). And put in another correction. Only, an hour later, I was still on the rise, hitting 22.0 (396) at 12.30pm. By this point, I was feeling very sick and clammy, and according to one of the mums there I looked "very grey and ill". Mmmm, nice. Not. I'm guessing by that point I was ketotic.

I whacked in 10 units by pen, and changed sets again. I went slightly overboard with the 10, but from my past experiences I know that when ketones get involved I need to get a LOT of insulin in, pretty quickly. I took a short nap through lunch and by the time the afternoon sessions were up at running I had dropped to 6.9 (in an hour!). That's a massive drop (although it felt so good to be back in range), so I had some more carbs *cough*a chocolate bar*cough*. I sipped on some low-carb (5g/100ml) drinks over the next couple of hours and dodged a hypo.

Finally set #4 worked. Just for those who are curious, the first 2 sets that failed were Medtronic Mios, and the third was a Medtronic QuickSet. The fourth one which worked was also a QuickSet. It was a really rough morning to be honest, and I really hated diabetes for preventing me in taking part in the conference that morning. Part of me had to see the irony that I had a huge diabetes cock-up at a diabetes conference, though!

"We don't live to be 'diabetic', we live to dance on the beach."

2010-11-02T10:13:00.000-07:00

Here are a few more photos from this past weekend at Friends for Life:

This is one of my favourite photos from the weekend. E and I comparing pumps! Well...we have the same pump. E is 3 and is one of the cutest kids I have ever met. Whilst it was great fun having our photo taken together, a part of me felt sad that another child's life was affected by d, and how I wished I could take it away from all the children there.

Animas

Medtronic

Roche

So, a few comments about the event and the experiences we had there. The lady who was running the Medtronic stand on Friday evening I found to be very rude - I walked over holding some Animas leaflets and she questioned me, "why are you reading Animas literature? Stick with Medtronic" - I realise she is essentially a saleswoman but hello, I'm the consumer and you've really just put me off speaking to you!

On the other hand I found the Animas reps incredibly friendly and open. They gave both Tom and I free One Touch machines to try and to review (review will be in a couple of weeks when I have had chance to play around with it!). They also gave us 2 of their 'comfort' infusion sets each to try out (they are compatible with Medtronic pumps when you use Animas reservoirs with them).

I hear the Animas 2020 is looking to become compatible with the Dexcom 7 which has recently become available in the UK (and if I win the lottery, I will be buying one...dream on, Siobhan, dream on!). Whilst I realise that I will probably never get funding for sensors, nor will I be able to self fund them, it's nice to think that the option would be there in terms of the technology.

Cellnovo were an interesting bunch. I had heard about the product a few months ago but hadn't heard much more about it since - so it was great to see them there. In essence, the pump is much like the Omnipod in that it is a pod of insulin - however, it has tubing and a cannula which are seperate from the reservoir of insulin. It it held on to your skin by what is basically velcro. It is controlled through a very nifty looking handset - it looks much akin to an iPhone or the like. Very easy to use, bright, bold colours, generally a nice piece of kit. The downside being of course that if you lose the handset, you can only receive basal insulin. They assured me that if that were to happen, a new handset would be sent out within 24 hours. The other thing we noticed was that the bolus and basal increments were relatively large compared to other pumps out on the market and so would not be good for little children who need tiny amounts of basal.

They reckon they are going to clinical trials in May 2011 and are aiming to be out on the market by the end of 2011...so watch this space, I suppose! On a sidenote, and something really cool - I filled out a feedback sheet for Cellnovo and was told I would be entered into a competition to win an iPod Nano...which I did! That was a very pleasant phonecall to receive.

Also there was the patient advocacy group, INPUT. They help patients get better access to pumps, they campaign for better access, so on so forth. Ultimately though they are awesome because they care, and they really do do their best to help people out. I told the lady there the whole story of my fight to get a funded pump, and let's just say things are about to get moving, big time.

With that in mind, I started to really look at the Animas pump for the first time. I have always said I want a purple Medtronic Veo, however I have to say I think I have been swayed over to Animas. It has the same technological features, such as the small amounts of basal. I found it easy to use and liked the clear screen. But I can't get carried away with myself - I haven't got funding yet.

All in all, it was a fantastic experience. I loved knowing that my experiences, having grown up with type 1 diabetes, were helpful to other people (such as the man who queried how often he should expect his son to have a severe hypo - aka one that means you need help from someone else. I told him in almost 20 years I have had maybe 3 or 4 like that, and that whilst obviously it is a big risk it may happen, you have to put things into perspective. From what I gather, he was very grateful to hear it). I'll definitely be back next year, I'm saving my pennies already!

As an end note, the quote I have used for the title of this post comes from Jeff Hitchcock who runs the Children With Diabetes charity. He said it during his closing speech, whilst showing a photo of his daughter, who is 23 and has type 1, dancing on the beach. He covered some very moving things, such as the 'dead in bed' syndrome and why that's a good reason to let your person with diabetes always sleep with someone in their bed (it was when he said that that it all became a little too real, a little too close for comfort).

But ultimately, that's the truth: I have diabetes. I don't wake up everyday to 'be' diabetic. I wake up being the person that I am, and hoping that I will have my dance on the beach.

Friends for Life UK 2010

2010-11-01T16:50:00.000-07:00

This past weekend I was lucky enough to attend the Children With Diab etes UK Friends for Life conference. There are no words to explain how fantastic the conference was and how much I enjoyed it (let's just say I'll be at the front of the queue for a place next year!)

Tom and I with Rufus!

We arrived on Friday night, settled in and began meeting all the parents I'd been speaking to via the CWD emailing list for so many months. That evening there was an official welcome, which included a stand up comedy routine from Olly Double (who has a comedy DVD all about diabetes! Read about it here) - absolutely hilarious, it had all of us in fits of laughter.

Over the course of the next 2 days we heard speeches given by various people - Gary Scheiner, Joe Solowiejczyk, Fiona Campbell to name a few. All fantastic, ranging from carb counting tips to helping deal with d as a family.

Joe S and Tom aka werewolf and vamp!

The halloween party was a great evening. Animas had brought along an excellent facepainter and she did a fantastic job ghouling everyone up!

In terms of companies there, there was Medtronic, Roche, Bayer, Animas and Cellnovo.

We grabbed as many freebies as we could carry - lots of glucose products from the US (don't think I'll need to buy any more dextrose for a good year or so...) including watermelon flavoured glucotab type things! Amazing...and here we are in the UK happy with our orange and raspberry variants! I also picked up a free OneTouch meter from Animas, a pump pouch (in the shape of a dog!) from Roche and lots of different logbooks from the various companies.

I have a few other photos I want to put up, but I'm awaiting permission from the children's parents.

I'll end with this: Tom, Gary Scheiner and I at the halloween party.

Not only is he the carb-counting king, he wasn't all that bad on the dancefloor! Thanks to his wife for taking this photo for us.

Pumping!!

2010-09-21T06:05:00.000-07:00

Yesterday I began my insulin pump trial. I arrived at the hospital a little early so I patiently sat in the diabetes centre waiting for my DSN to finish with the patients she had (an elderly couple) in there. After they left, she left the door open whilst she popped into the office - which meant I could see a purple Medtronic pump sat on the side!!! As I've mentioned before, I reeeeeeeally want a purple Medtronic.

The first thing my DSN said was that she didn't feel the need for a 10 week trial. She explained that the trial is just to make sure I am confident using the pump, and I'm overall happy with the pump. She said she herself is confident I can use the pump (thankyou, diabetes meetups, and having a pumping boyfriend!) and is fairly sure I will be happy with it, so she cut it down to a 2 week trial. At which point I gulped and asked if I'd have to hand it back after two weeks.

She explained that no, this pump is basically mine to keep for a reasonable amount of time, until we get funding from South Birmingham Primary Care Trust (PCT). Obviously, as I am borrowing this from the hospital, I can't keep it for a ridiculous amount of time - but my DSN is trying to be positive and is determind to get funding for me.

After the 2 weeks, as long as all is going well (not necessarily in terms of BG levels as she & I are expecting them to go wild soon), she will then request that my consultant writes to the PCT to request funding. And then we wait and see what they say.

So the pump! It's a purple Medtronic Paradigm 512. It's the model before the Paradigm Veos, so it does all the same things minus a few details.

I still have Lantus running around my system so I've been running on the low side ever since I put it on - or rather, I haven't gone much about 6mmol/l, so I feel as if I'm battling off hypos. As much as I would love to keep my levels below 6mmol/l all the time, I know this won't last! I have treated 3 mild hypos this morning.

My DSN worked out a baseline basal by taking my estimated total daily dose (48 units), taking off 25% (36u), dividing that in half (18) then slashing another 2u off that. So 16u over 24 hours = 0.65u per hour. This obviously will change in the next few days, but until the Lantus is out, I'm a bit stuck as to what to do.

I walked to Sainsburys this morning and had to put a 60% temp basal on on the way back as I hypo'd in Sainsburys and didn't come much above 4 after treatment. I did however get my prescription for vials of Novorapid sorted so I'm pleased!

Curiously, my DSN got me to draw up my first reservoir of insulin from my pen cartridge. Not something I'd heard of doing before, but it worked and we had no air bubbles. The test will be when I have to change the reservoir, see how I get on!

(apologies for the grainy photo - it was taken on webcam!)

All aboard the change train.

2010-09-16T13:27:00.000-07:00

The past couple of weeks have been somewhat rather hectic due to the new job and the move down to Brighton. I love Brighton, although I am still slightly outside my comfort zone. Not much is familiar here and whilst I'm not struggling with that, I do find it slightly daunting sometimes.

Diabetes wise I have had a horrible couple of days battling mountain peaks of BG levels. I had a 2.9 at work this morning which needed a mug of lucozade, 7 dextrose and 2 digestive biscuits to get me back up and staying up in the 6s. It wasn't pretty or pleasant and I don't care for a repeat of it tomorrow. I think it's because I'm up at 5.30am and eating so early - I'm going to experiment with ratios tomorrow morning.

On Saturday I'm heading back to Birmingham for 4 days, on Saturday there is a meet up going on (loosely based around the Diabetes Support forums, but as always anyone is welcome - details are in the forum). Sunday I'll chill out then MONDAY!

Monday, I am going live on an insulin pump. As my DSN is impossible to get hold of, I still don't know which pump I will be trialling - I am hoping for a Medtronic as I have many friends on it and have been able to play with a couple of them, so I'm fairly familiar with them. (disclaimer: Medtronic are not paying or endorsing me).

The Tuesday! Tuesday I am being filmed answering questions on growing up with type 1. It's for the social media team at Birmingham Children's Hospital, where I was treated my entire child life. They are creating some kind of channel (yeah, I know all the details...) on facebook aimed at young people with type 1, and my paed DSN suggested me to the team running the whole thing. I'm looking forward to it!

And that is all for now. I need to get some sleep before work tomorrow!

Now the CGM has gone...

2010-08-31T16:16:00.000-07:00

...I kind of miss it. I liked being able to look and see what my levels were doing, even if it wasn't always accurate or reliable.

Apparently I had really got used to it being there, as even today after I took it off I noticed myself still being extra careful with that side of my body, eg not leaning on it or slamming the till shut when I was resting my hip on it at work! 5 days but it got a little ingrained in me.

CGM, days 4 and 5.

2010-08-30T14:44:00.000-07:00

I'm handing the CGM back tomorrow and hopefully will get to see all the downloaded data from it. I'm really curious as to what my team make of it (hopefully it won't be "you're fine, we're going to cancel your pump trial").

It's got a tiny bit tender today, I've knocked it a couple of times today and it hurt a little. Nothing too bad, just a bit tender.

I do like this technology. I really do. I think it offers a lot of hope for us in terms of control (and peace of mind). However, until the technology is advanced, I still remain on the unconvinced side of things. I look forward to it improving though!

Here's the last 24 hours. Shot up to 17 after breakfast (despite a correction to deal with the 12.something I woke up on), and then spent the rest of the day battling the Himalayas (aka spikes in my blood glucose levels).

I think I bottomed out at 3.3, but had several 'low glucose alert' alarms after which had to be dealt with with juice!

CGM day 3.

2010-08-28T17:34:00.000-07:00

Well, today I am thoroughly unimpressed with this bit of kit.

It hasn't picked up on the rises and falls my BG tests have shown; for example, BG tests showed I swung around the 7 - 11 mark for some of the afternoon - CGM stayed in the 11s the whole time. Every time I have done a BG test today, the CGM is out by at least 3mmol/l.

The whole point of this is to show my team the rises and falls in my glucose levels - yet it keeps deciding I'm just sitting stable almost all the time! Right now it's showing 8.5 with a downward arrow -- no no wait, I just checked again and I'm 8.4 with an arrow pointing forwards, meaning my levels are steady.

BG test is: 7.6. Not bad, for once. 7.6 is a good number for 1.30am, but I know it's only because I've been working since 5pm. We'll see what happens tomorrow when I'm off to see my mum's family for the day and spend the day just chilling out. This time last night I was up in the 11s.

Now for some much needed sleep!

CGM photos

2010-08-28T05:52:00.000-07:00

I'm being brave and showing the world my midriff...

Close up - yep, the sticky stuff is looking just LOVELY and it's only been 48 hours! The black, left hand part holds the sensor, which is just a small micro-chip like thing with an extra prong that sits under my skin by 4mm. The grey part is the transmittor.

The receiver, as of about 20 minutes ago. BG test says I'm actually in the 9s, but according to this I've been in the 11s and 12s all morning.

And over the past 24 hours? Stayed pretty high with a couple of nice swings.

CGM: day 1 & 2 of 5.

2010-08-27T15:17:00.000-07:00

Yesterday morning, I was 'hooked up' to a Freestyle Navigator. I'll be wearing it for 5 days before handing it back to the hospital. The aim of this is to see what's going on with my levels before I start the pump trial (which is having to be pushed back due to my move to Brighton). It will take glucose readings from my interstitial fluid (I have no idea what that means either - but it does mean it's different to my blood glucose readings, which reads the plasma in my blood). This means the 'real time' readings I get on the handset are actually about 15 minutes behind what I really am - so I'm not stopping the finger prick testing as I will still be basing all my insulin decisions on the blood glucose readings. However, the Freestyle Navigator takes a reading every 5 minutes, so I can pull up some awesome graphs that give a general picture of what my levels have been like. (the one I'm wearing has UK settings, so it's in mmol/l, not mg/dl).

(nb: over the past 24 hours, they have been swinging up and down, and generally staying slightly above range. lovely)

It took 3 goes to get the thing in - and there will be photos once I find the cable for my camera!

The first one went in fine, bled a tiny tiny bit, but then threw up a sensor error. Nurse said no problem, we'll try another one.

This one I inserted without any help (Nursey had guided me through the first one as I'd never put one in before). I 'shunked' the device into place, pressing down quite hard. That was my mistake apparently, as then it was as if I'd hit an artery or something. Blood starting pouring out and eventually filled the cradle that the transmitter sits in! I was half lying down in the chair I was sat in to try and stop the blood from pouring all down my front.

Third time lucky - we switched back to the left side of my abdomen and this time it took just fine. After a calibration an hour later, I started seeing numbers!

I spent the day madly rushing to catch trains to London, then Brighton, and just generally rushing around - causing me to drop down to 2.0 (blood glucose test) and the sensor deciding to go offline for a while. Long story short, 4 hours later I manually recalibrated it and I was good to go again.

Since then it's been fine. It's such a comfort to have it - I don't rely on the numbers it gives me, but it's so good getting a general indication of what my levels are doing. I've always shunned CGM to be honest, with the notion that it's useless as it's often so inaccurate - but actually, I really like it. Like I say, it feels incredibly comforting to not worry in between blood glucose tests what the hell my levels are doing.

I've decided I'm going to win the lottery so that I can afford to self fund...!

Good moments.

2010-08-23T15:49:00.000-07:00

I work in a shop (a newsagent, a general store type of place). I spend all my time working behind the tills. 2 kids came into the shop today, I'm guessing they were about 13 or 14 years old? As they queued up behind the woman I was serving, I overheard one of them saying "you can't have chocolate because you have diabetes...di-di-di-di-abetes..." and generally taunting his friend. It wasn't meant in a malicious manner, that was obvious, but still - I was like woah hold on there a minute!

So when I served them (just out of interest, they bought 2 Ribenas: 1 normal, 1 sugar free) I said to the kid who had been teasing the other guy "I'm diabetic, and I eat plenty of chocolate!"

Two things happened here:

1) said kid starting going "I'm so sorry! I didn't mean it! Sorrrrrrry!" - to which I told him it didn't bother me

2) the other kid looked up at me and said "that's just made my day."

Kind of felt like one diabetic sticking up for another, you know?

Poor, poor blog.

2010-08-18T14:43:00.000-07:00

My poor blog has unfortunately been what I've had to sacrifice over the last few weeks with everything going on here.

The first, and most excellent news, is that I have a new job! It's a health care assistant role at a hospital in Brighton. I can start once all the appropriate bits of paper have been filled in, checks made, references gathered. The paperwork I received today says they would like me to start on September 6th as long as said checks etc have gone through - that's less than 3 weeks away (and also the date I am due to start my pump trial, cue panic emails being send to my DSN)!

(for those non-UKers, I am currently based in Birmingham, in the middle of England, and Brighton is on the south coast, approx 160 miles south).

(and the thought of living by the SEA SIDE!!! makes me feel as happy as the kid in the photo on the right)

So: I am attempting to be able to get down and visit some places to rent (I intend to move into a houseshare, to keep my costs down) - which is nigh on impossible, considering I am working full time and train tickets are £40 return and I am trying to save up to be able to pay a deposit! Anyone want to give me the winning lottery numbers?!

I'm incredibly excited about this huge change in my life; I'm going to live in a city I love, do a job that will set me up brilliantly to go into nursing and finally I feel like I am on the right path in life.

...but seriously, those lottery numbers would be nice!

Catching up!

2010-07-30T14:24:00.000-07:00

Back on July 14th, Allison over at Lemonade Life kindly allowed me to guest post for her. Please see here for the post. Thankyou very much Allison for the opportunity!

I'm really excited for Bec at Insulin's Involved who is currently 'practicing' with a trial pump before picking her very own next week! I really hope everything goes well for her :)

Sam over at Talking Blood Glucose is finally on her pump! She's called it Florence...go and read all about it on her blog.

As for me? Toddling along. Some horrible lows of late, but I have stopped the night time hypos - only by dramatically cutting back on my Lantus which means I am now waking up way out of range, but my DSN said this is the route she wants to take until she is back in a week's time and we can look at switching to Levemir (another type of basal insulin).

I scared the bejesus out of 3 supervisors at work today...I had tested and was 3.6. The 3 of them were standing just besides me so I turned to them to let them know I needed to take a break, when one of them said "Woah, why do you look so tired?" to which I replied "because I'm having a hypo." All of them looked like I'd just slapped them and they all told me to go and take a break. Good to have understanding colleagues!

In other news, I have started jogging. I have been twice - both times I have hypo'd, one time I managed to throw half a tub of test strips across the path (yes, I picked every single one up!). I'm trying to work out how to best manage my levels - I plan to go again on Sunday evening.

On Monday I plan to email the last week or so's BG readings to one of the DSNs on my team. See if she has any suggestions or can help in any way!

Missing in action!

2010-07-21T15:28:00.000-07:00

Since starting my new job almost 3 weeks ago, my blog has taken a blow. I work really annoying, irregular shifts, which has left me so tired that when I do get home I'm too tired to update...or I'm so tired I sleep all the way through the morning. I'm hoping now I'm employed it'll be easier to find a different job!

Amazing things happened on Monday. I saw my DSN who has agreed to let me trial an insulin pump as of September 6th! The trial will last 10 weeks and as long as they see an improvement, I should be good to then go for funding to get my *own* pump. To say I am excited is beyond words. I cried when I left the hospital. I'm only just coming down from cloud 9!

I asked about going onto a CGM for a few days and she agrees that it would be a good idea so at some point in August I will get hooked up to one for 5 days.

I am also getting an Accu-Chek Aviva Expert courtesy of my DSN (apparently they cost £80 to buy! She was happy to give me one to try and destress me a little about everything). It's basically the handset to the Roche Spirit Combo pump, which when combined with the pump allows you to bolus and give corrections via the handset - being as I don't have a pump, it obviously doesn't do that, but it does calculate doses, have a huge carb index, etc. I'm going to pick that up tomorrow.

Since working, my numbers have been all over the place. I am still struggling with night time hypos - I start to drop from about 11pm onwards, resulting in a hypo somewhere around 1 - 3am. We have agreed in the mean time I will reduce my Lantus down until the hypos disappear and I will just correct the highs in the morning. Not ideal by any stretch of the imagination, but at least the hypo should in theory go. I've dropped from originally taking 13u of Lantus at night down to 5u. I'm on day 2 of 5u so let's see what happens.

I have my alarm set for 3am!

Also...not that I'm a geek but...

All quiet over here...

2010-07-12T11:03:00.000-07:00

It's been a pretty busy, but quiet, time over here in Birmingham. I've been working my backside off at my new job (which I hate with a passion and am desperately trying to get out of, ASAP!) and also, way more importantly, I've been hanging out with some other PWD.

Firstly, Brighton, Saturday 3rd July. 15 of us in total spent the day in Brighton, in various bars along the beach front and then a trip down the pier. I'd met most of the people there before, but it was fantastic to catch up and meet the people I hadn't met previously. I got very sunburnt and looked like a lobster for a couple of days, but there we go!

We managed to steer fairly clear of hypos despite the heat...besides between 15 of us, it wasn't like anyone was short of supplies. I hypo'd just before lunch which made me feel pretty grotty, and I was grateful to be with PWD - I thought I had come out of the hypo, but Shelley was quick to point out I was still rambling when talking to her, so I shoveled some more dextrose tabs down my neck!

None of these photos are mine; I don't take credit for them. They are either Shelley's or Alan's.

Shelley and I!

L-R: Bernice, myself, Shelley, Katie, Tom

Then came London this Saturday...it was run by John who runs the North London Young Diabetics support group (search for them on facebook!), so there were lots of faces I hadn't seen before, but again, plenty I had! Another lovely day spent lounging in the park. I avoided the sunburn this time, but I did manage to squish a purple berry on my white dress :( oh well! One of the women who came, Naomi, brought along her adorable puppy...Roxy is 18 weeks old! Safe to say she kept us 'awwwwwwwwww'ing most of the afternoon.

Shelley, Sarah and I

Roxy!!

Everyone

Roll on the next meet!

July, already?!

2010-07-01T14:17:00.000-07:00

I cannot fathom it being July already. Where has the last 6 months gone? Not only that, but my cousin turned 14 today...you know, the cousin who in your head will always be a toddler. Now she's taller than me and it's just crazy.

Anyway! Point of today's post: my journey to getting a pump.

I didn't blog about this, as I was too upset at the time. On June 8th, I saw my DSN, Becky, to discuss going onto a pump. Becky is very pro-pump, but unless the consultant says I need one, Becky basically can't swing anything. Long story short: she said she understands why I want one and thinks it would be good for me psychologically, but in terms of clinical need (brief rundown for non-UKers: over here you have to get approved by your consultant to get one, and this goes according to the NICE guideines [click 'read full summary] being as it is all paid for by the NHS) I didn't stand a chance. I accepted this, shed a few tears over it, but moved on.

Today I saw the consultant, aka the guy I need to convince that I need a pump. He looked at my logs and said "I think you may need one, but you're not at that stage just yet" which almost had me jumping up and down with excitement. He didn't rule out the possibility that it could be an option!

Basically, he wants me to tweak my overnight basal (background insulin, I take 2 injections of it a day), and see what happens with that, as I'm hypoing every morning. He said if that doesn't work, he'll get me in to have a talk about pumping. Again, nothing definite...but I'm on the right road now.

I'm not overly convinced tweaking my basal any more is going to do anything, as I suspect it will leave me high all night and then drop me down to 'normal' numbers instead of a hypo. However - I won't know until I try, so tonight is night #1 of 10u Lantus. I'll be logging EVERYTHING.

I have another appointment to see him in 6 months, but he has said he wants me to see the DSN every 8 weeks, and if she thinks I'm still having issues, I can get an appointment to see him sooner than that.

My hab1c is 7.1% which he was VERY impressed with, but I pointed out for the past 6 months I have basically been able to sit around and entirely focus on the d, but now with working shifts and actually having a life, I suspect things will go pear shaped. Again, time will tell. He did seem to take it into account when I pointed out for the past 2 years I have had hba1cs in the 8s and 9s, it's only the past 6 months it has come down.

So. Whilst I expect this to all take some time, I am happy that I am on the right path.

Just for the record, I have my heart set on a purple Paradigm Veo. Fingers crossed one day it will become a reality.

101 things in 1001 days.

2010-06-29T15:25:00.000-07:00

Ages ago, I attempted to do the challenge of 101 things in 1001 days. This hasn't happened over the past few months for personal reasons (move back to Birmingham, split up from my partner). I'm going to attempt to do it though, and I shall blog them all.

I'm off to write my list!

Perhaps slightly controversial?

2010-06-25T04:41:00.000-07:00

Chatting to my mum the other day, she said something that at the time shocked me. Now I think about it, I can see her logic, but I still disagree with it.

My sister was born 3 months before I was diagnosed. My mum said if she had known I was going to be diagnosed, she wouldn't have had another child, as she wouldn't have wanted to take the risk of another child having to live with type 1.

As I said above, I can see the logic behind it - living with type 1 is no fun and noone would wish it upon a kid.

But on the other hand...really? When I have thought about having children, passing on type 1 has never really come into the equation. Should it? I'm not sure. I have never taken it into the equation. When I think about type 1 and pregnancy, I think about the risks associated with a type 1 becoming pregnant, not the risk of passing it on. I know the statistics are pretty low, and increase slightly if the father has type 1 (I don't know the exact statistics).

So for me, I wouldn't forsake having a child because of the risk of type 1. I've never really seen this discussed anywhere, so I'm curious about your feelings on it?

Things I have learnt in the past week.

2010-06-22T06:27:00.000-07:00

I was diagnosed at a very young age, which means I can't remember a lot of what I was treated with etc when I was younger. However, I've been asking a lot of questions over the past week or so, and here's what I've learnt.

1) when I was first diagnosed, we had the kind of blood glucose testing kit in which you'd apply a drop of blood and then wipe it off 2 minutes later. I have no memory of this, whatsoever.

2) there's at least 1 other type 1 in my close family; my mum's cousin was diagnosed when he was about 12. My mum is also convinced his daughter is type 1, although my nan isn't so sure. We're not in touch with that side of the family, but I'm going to try and change that.

3) in some ways I had forgotten the times of 'feeding your insulin' (particularly when you're on 2 x daily injections), until I was reminded of having to have snacks mid morning and before bed to stop me going hypo.

4) a particularly horrible hypo I had aged around 4 or 5, in the night. I remember being in bed and being really sweaty and just...yucky. I remember my parents coming in and out of my room to check on me. I think I had lucozade tablets at the time.

5) when I was first diagnosed, my parents needed to know the symptoms of a hypo. So the doctors made me go low on purpose - I suppose you could say it was for educational reasons, but still!

I'm going to get as much information out of my parents as possible. I'd love to compile it all together someday; not a book or anything, but just for my own reference.

Bullseye!

2010-06-14T11:54:00.000-07:00

My sister has just reminded me of something my dad used to do when I was younger. Sometimes when he'd give me my injection (which makes me realise this was years ago, I was doing my own injections by age 6 or 7) and say things to mak me laugh - he used to watch darts, so he'd yell things like "Onnnnnne hundred and eighty!" when approaching me with the needle...and he'd pretend to throw the needle in my arm.

Reading back it sounds kind of sadistic, but as a small small child it made me laugh and took the edge off those injections!

Nasty low.

2010-06-13T15:32:00.000-07:00

Last night, I had wine and pizza. I had been hypo most of the afternooon (we had walked to see a friend's degree art show, and the walk had turned out to be about twice the distance we'd be told and it was really, really hot). I'd spotted a downward trend before I hit the 3s and had 3 dextrose tablets to bring me up a bit. And...nothing. I stayed in the 3s for what felt like HOURS (was more like 1 - 2 hours) before heading above 4. In all I had roughly half a packet of dextrose, which is way more than I would normally need. Thankyou, heat.

So, post the show, I and a friend went to get pizza and wine to have in his hotel room (which makes me sound really sleazy...he's my best male friend, and gay, for the record!). Knowing I had been low that afternoon and that I was going to have alcohol, I reduced my bolus by 20%.

An hour post-pizza I was 14.4. I didn't correct. I'm not happy with levels like that, but I knew the bolus still had plenty of time to work. Half an hour later, 12.0.

1.38am, 2.3mmol/l. That's 41, for the USers.

It was one of those lows where you wake up DRENCHED in sweat and barely able to lift your head from the pillow. I keep my testing kit and hypo treatment within grabbing distance, so I could stab the straw into the OJ cartoon and drink it whilst still curled up. I waited 15 min, retested and got a 2.9. Still shaking like a leaf and stumbling, I went downstairs where I demolished a slice of my mum's homemade orange and lemon cake (SO DAMN GOOD), a packet of crisps and 2 biscuits. Yeah, too much. I was concerned that I have a habit of dropping anyway overnight, I wanted to have more 'room' to drop.

I woke up on a 12.2, again not wonderfully but I can deal with that after a ridiculous afternoon of hypos and then mega hypo at night. Although all day I've been running on the high side, thinking about it. I'm back down below 10 now, so I'm happy with that.

Now, for some more of that amazing cake...

Me, without the D.

2010-06-10T11:35:00.000-07:00

Hi. I'm Siobhan, I'm 22 and I've spent the majority of my life living in Birmingham, England.

As of today, I'm employed! I have a job in the catering department of a private hospital. It's not well paid and it isn't glam, but it's money and a job I think I will enjoy.

Before now, I've done a whole range of stuff. I took a gap year after my A levels and worked in a pub, in a phone shop, and for the kid's activity company PGL. Through PGL, I lived in rural Herefordshire and in Paris, France. After that I went to America - to Alexandria, Virginia, right on the border of Washington DC - to work in a YMCA for the summer. It was fantastic, although the work wasn't great. I loved it.

After that I went to uni, Bath Spa Uni, down in beautiful Bath. I dropped out after my first year - honestly, I wasn't in the right place mentally. I had huge anxiety/mental health issues. I had even planned, and got as far as being accepted on, to go and study abroad in my second year - I would have gone to Joensuu University in Finland! I was studying International Education, I switched from Geography and Education as I decided I wanted to drop Geography.

Since dropping out of uni in 2008, I have: worked on a floating restaurant, worked in a bank (worst job I have ever done, hands down) and worked with adults with learning difficulties. I lived in a biodynamic/anthroposophical community for 6 months; I got eat the crops grown on the garden, the meat that was raised on the farm, I got to help out working on the farm. Our milk and eggs came from the farm, too.

When I'm not working, I'm usually trying to be as active as I can in the D community, reading a book or spending time with my family. I've recently moved back home to Birmingham and I'm hoping to move into my own place (well, I'll be renting somewhere with my dad) in the next few months - just need to save up for the deposit on a flat!

I've just got a job (as I mentioned above) and I'm working on getting fit. I'd like to lose weight but that's not my big aim - my big aim is to drop a dress size and just feel healthier. I am doing it slowly, but the one big thing I really want to start doing is exercising more - I'm contemplating how I can do this. I'm not big on running. I might start doing some long evening walks. I could do with a dog. Anyone want to lend me a dog?

Inspired by Emily...

2010-06-05T11:05:00.000-07:00

I took a brick to a MyLife Pura.

Here's the first video (no smashing in the videos) and here is the second.

Result...

Oh happy days...

It's the small things...

2010-06-05T06:08:00.000-07:00

...that make you feel better and make you laugh.

This photo is courtesy of my friend Emily, who I met a few weeks ago. She emailed it to me, presumably after a bad d day :p I believe it at some point it was a Contour tester, that has met a hammer or some other implement!

I don't think I've laughed so hard for a very long time when she emailed it to me! Thanks Emily!

Why I fail at basal testing

2010-06-02T14:07:00.000-07:00

Today I was determined to do a basal test at some point of the day. Absolutely determined.

What I didn't factor in was how damn hungry I get...so I failed at the 2 basal tests I started today.

If I'm in range when I wake up, I'll do one tomorrow morning, from when I wake at about 8.30 for at least 5 hours, but I'll keep going if I can for as long as I can. I've had pasta this evening, so I'm hoping that will keep me going through tomorrow morning!

If I'm not in range - I'll do one as and when I can. I'd try and get philosophical about it, but it's not really worth it!

Why I have a love/hate relationship with eating out

2010-05-31T11:45:00.000-07:00

Yesterday and today I went to see my grandparents/auntunclecousins, with my mum. Had a lovely time relaxing and spending time with them. Until...we went out to eat.

It was a small American-style restaurant. Buddies, to be precised. No carb info, so I had to guesstimate. I wanted to inject some time before we ate, so whilst we were waiting to be seated, I planned what to order (triple-decker BLT with fries) and then eyed up everything coming out of the kitchen doors until I saw a sandwich coming out, so I could try and line up the carbs and the insulin. The sandwiches were 3 slices of bread and the chips were just a standard bowlful. Eyeing it up, I guesstimated 60g carbs for the sandwich and 50g for the chips. On a 1u:7g, that worked out at 15u. I split it 10/5 over 2 hours (10 up front, 5 2 hours later). So 10u at 2pm, 5 at 4pm.

6pm, and I'm feeling rough. I knew I was high - but part of me was putting off testing (I hate getting the carb guess wrong). Anyway - it was 15.3. Bleugh. 2 glasses of squash and 4u of Novorapid later and we left Northampton. I'm now (7:20pm) at 9.9.

My thoughts: chips were far fattier than I predicted, thus a slower release? Ah, learning curve. I seem to be having a lot of those.

Good part of the day: I bought a new handbag! I had some vouchers left over from a while ago, so I headed into New Look and purchased a really nice handbag.

(I have an interview tomorrow, my first interview in almost 2 years. It's nothing glamorous - a care assistant in an old people's home - but it's full time hours and a literal 5 minute walk from the house. It would be great if I got it and I'm keeping my fingers crossed!)

My dad.

2010-05-29T04:08:00.000-07:00

My parents split up when I was about 9, which resulted in my dad moving into a flat just around the corner from us. We (myself and my sister) saw him very often, and stayed over every Saturday. It was a groovy arrangement, but one that meant he didn't have much involvement in my diabetes care (not because he didn't want to - just didn't have to).

I moved out of my mum's house when I was 18, living a range of places...Hereford, Paris, just outside Washington DC, Bath, Stourbridge, Gloucester...until a couple of weeks ago when I moved back home.

I'm hoping to be able to live with my dad at some point; as soon as I get a job and can afford it, we'll look at renting a flat or house somewhere. It's a pretty sweet arrangement: we are very very similar people (we both prefer early nights and early mornings than late nights and late mornings, we have a similar music taste, we share the same sense of humour, so on so forth).

What's really made me proud/pleased/feeling fuzzy on the inside is that my dad is actively seeking out ways to learn about how I manage my diabetes. He's asking lots of questions and asking me to tell him about things. He wants to support me as I try to get as involved as I can in the diabetes world; he's said he'll come to any events etc that are happening (I've roped him into the JDRF Discovery Day in a few weeks!). He said this morning "it really is a full time job, isn't it?" and it's so good to hear that - that he gets the bigger picture. That sounds so patronising - but I hope you know what I mean.

I'm going to embarrass him and my sister by putting up a photo; this is from father's day last year, when we took him to the Electric Cinema where they were showing his favourite Bond film, Goldfinger! My sister is demonstrating the very novelty 'text the bar' service, where you can text a number and they bring you whatever your order, straight to your seat - very cool!

**edit**: just had a call from Dad - he wanted me to point out that he has lost 2 stone since this photo. I was going to put in the post to begin with, but wasn't sure how to phrase it politely, yknow? So yeah. Dad has done brilliantly, totally revamped his diet and has lost loads of weight and is a proper slim Jim now! :)

Why I want to raise awareness of Type 1

2010-05-27T05:31:00.000-07:00

So, I've lived with type 1 for 19 years. However - over the past year, type 1 has become much more than just the devil on my shoulder - it's become my passion.

I want to find a cure. Not me personally - I'm not a scientist! - but I want to raise awareness, to raise money, to fund the scientists to find the cure. I want to help create a sense of community for children and teens living with it, because I've been a child and a teen living with it!

I don't want kids - babies, toddlers, school kids - having to live with x amount of injections and y amount of blood glucose tests a day. I don't want them to have to be hooked up to a pump to stay alive. I don't want them to spend their lives constantly carb counting, working out ratios, factoring in exercise, fat content, etc.

I'm going to be doing some volunteer fundraising whilst I haven't got a job. I want to boost my fundraising experience and profile. I'd love to get a job working for JDRF as a fundraiser, or even just a long term volunteer. I'd still like to do nursing. I'm trying to wrap myself up in the world of diabetes, to become part of it, to be an active member of it.

And I'm taking steps, y'know?

I've set up an informal support group for young people in the Midlands living with diabetes. It's called MyD (Midlands Young Diabetics) - the facebook page is here, the website site is here. Please contact me for more info, and please pass the details on to anyone who may be interested!

I'm meeting up with JDRF's regional fundraiser (based in Birmingham) tomorrow, to discuss how to involve more young people with type 1 with JDRF.

I'm volunteering at JDRF's Discovery Day in Birmingham and I'm hoping to Walk to Cure later this year.

...and I'll be doing anything else I can think of along the way!

New loot!

2010-05-26T05:47:00.000-07:00

Gold, m'hearties!

Okay...maybe not gold. Over the past week, I've been adding to my collection of diabetes kit.

I've had a lot of lovely things come in the post!

First off, I got the awesome Contour USB from Sam over at Talking Blood Glucose. Sam was incredibly kind and sent me her spare one (long story!) as I was desperate for one but couldn't really afford one (see: being unemployed). The Contour USB is an brilliant piece of kit - wonderfully easy to use and it has some brilliant features (such as being able to stick it in your computer and it producing lovely graphs and spreadsheets).

Then, I got a NovoPen4 from Shelley. I've been after one for a while, as my NovoPen3 was looking a tad on the battered and bruised side. Actually it was looking quite close to death, to be honest! It was great to get that in the post.

Yesterday, I got TWO things in the post: a lady called Heather from the Children With Diabetes emailing list sent me a NovoPen Junior. Hurrah!! I can now inject half units. Oh happy days - more accurate dosing! I am really happy to have the NovoPen Junior.

The other thing I got was a Multiclix lancing device from Accu-Check device. I am a little bemused as to how Accu-Chek got my address, as I'm 98% certain I've never given them my address! Oh well.

So, my biggest thanks to the diabetes online community, as 3 of the 4 things I've had have come from the guys on there. Thankyou :)

Bureaux Volume Two: My First Day

2010-05-24T14:31:00.000-07:00

Welcome to the second edition of the Bureaux Carnival! I'm pleased to be able to show case some awesome blogs today. The theme for this carnival was 'my first day', and any way you wanted to interpret that.

Diabetes can be like your first day at school, only over and over again. Sam talks about all her firsts with diabetes from her first injection to the first time she realised she was on the wrong track.

Alison over at Shoot Up or Put Up discusses the fact that despite not remembering her diagnosis, she has racked up a fair few 'firsts'. Go on over and check the post out to see what her firsts were!

Becky on the other hand looks at the concept of picking any day as a first, and not placing pressure on ourselves in case of setting ourselves up for failure and disappointment.

The next bureaux will be hosted in 2 weeks over at Sam's blog, Talking Blood Glucose. Keep your eyes peeled for information!

Wow.

2010-05-24T05:16:00.000-07:00

Oh Diabetes UK, you have epically embarrassed yourselves royally. Consider that you are the 'leading' charity for people with diabetes in the UK, and you can't even distinguish between type one and type two?

"One of the things we're doing in Diabetes Week is dispelling the myths around diabetes. We've launched 5 new images to help with this, which mention some of the most popular myths we hear about:

Diabetes myth: Eating too much sugar causes diabetes
Diabetes myth: Type 2 diabetes is mild diabetes...
Diabetes myth: If you ha...ve diabetes you can't drive
Diabetes myth: People with diabetes can't play sport
Diabetes myth: Having diabetes means you can’t do certain jobs

Visit our website and Share these new images via Facebook so all your friends and family can help spread the word!"

Well...hi, Diabetes UK. As a type one diabetic, I can't drive a public bus, or a train, or fly a plane. I can't join the armed forces and I can't work on a cruise ship (the last time I checked).

So please DUK, explain how it's a myth? You're right about type 2s, I'll give you that - most jobs are still open to them. But once again you have failed to distinguish between the two types, which are essentially two massively different conditions.

Let me quote your website:

"OK, let’s just get it over with and start with the jobs you aren’t allowed to do. The reason you aren’t allowed to do them is because blanket restrictions have been placed on people with insulin-dependent diabetes applying for the jobs, which include:

• the Armed Forces

• jobs requiring a large goods vehicle licence or a licence to drive certain passenger carrying vehicles (PCV's)

• airline pilot and in some cases cabin crew

• working offshore, for example, on oil-rigs or aboard cruise liners (even as a caterer – an illogical blanket ban!)

• there may be restrictions on other jobs, eg. train driving. These may be decided on an individual basis.

This may seem unfair – and Diabetes UK agrees – but unfortunately this is the case at the moment. However, things won’t always be this way. The situation is always improving.

For example, since October 2004, blanket restrictions have been lifted on joining the fire, police and ambulance service. This means you can now apply for jobs within these sectors, but your fitness to do the job will be assessed on an individual basis. People who use insulin and who already have jobs in these sectors should be allowed to continue, as long as they are fit to do so."

-http://www.diabetes.org.uk/Guide-to-diabetes/My-life/Teens/Me-and-my-diabetes/Employment/

Let's reiterate: you would like to dispell the myth that 'having diabetes means you can't do certain jobs', but the information you give out to teh general public catergorically states that there are jobs you can't do.

I appreciate that DUK are doing the campaign to raise awareness, but when they are putting out info that simply isn't correct and is totally misleading, it makes me want to hit my head off my desk.

Review: You Snap The Whip

2010-05-23T02:34:00.000-07:00

After hearing and reading excellent reviews of Lush's You Snap The Whip, I decided to bust out my wallet and buy some. I'm so glad I did!

You Snap The Whip is a a body scrub and body butter. It smells deliciously of blackcurrants (so much so that I sort of want to eat it. I won't.)

I've been advised to use it to help soften up the skin on my fingers, as I've been abusing them for years by testing my blood glucose levels. I'm willing to give anything a try, so I tootled off to Lush and purchased some.

I'm totally bowled over by the stuff. It smells absolutely gorgeous, and the smell lingers for a while after, which is great (yes, I am currently sniffing my arm to smell the blackcurrants again...). I use it all over my body, not just on my fingers. It's square shaped, so it's easy just to 'wipe' it over your skin! Give it a good rub in, and yum yum yum, you're done. It contains charcoal, so it does turn the water/bath tub black for a while, until you rinse it off!

I've been scrubbing the sides of my fingers with it. I've only been using it for a week so far, and I won't pretend to have seen a huge improvement - but they ARE getting softer. I made my mum stroke my fingers before I started using it, and I'll get her to do it again in a couple of weeks to see if she thinks there has been a big improvement!

At the rate I've been using it (daily), I reckon the block I've bought is going to last me about a month. At £5 a block, I will happily be buying a new one each month. It leaves your skin feeling lovely and soft, smelling beautiful and totally replenished.

Oh, alcohol

2010-05-22T15:55:00.001-07:00

Tonight, I've had a fair few drinks (wine!).

I've also been snacking and bolusing where appropriate. We had some pizza earlier - I had one slice. Normally I would give 2u for that slice (guesstimating at 20g carbs) but I gave one, and I'm hoping that the slow releasing carbs in it will hold off the hypo from alcohol.

Never let it be said people with type one can't drink. We can, it's just a little more complicated.

Infuriated...then calmed.

2010-05-21T14:54:00.000-07:00

I had to post about this. A friend of mine, also t1, posted on the Diabetes UK Facebook page that she had called ahead to the nightclub she was going to to inform them she was bringing an insulin pen, only to be told it was policy to have them taken off the person and put into the medical box.

This angered a lot of people. But the story has a good end!

I was absolutely furious - take my insulin? OFF me?

I sent a very angry email to them, and hunted down their phone number. The girl I first spoke to on the phone told me the same story - to which I promptly blew my steam at her.

I got to speak to the manager, who assured me that it *was* policy a few years ago, but hasn't been for a long time. He said that they have a medical room and ask if that if anyone needs to inject, they do it in there, rather than the toilets. I informed the manager what the first member of staff had said, and he said he would set her straight.

He even offered to meet my friend at the door (sadly we're only facebook friends, and I don't have her number) to let her know the facts. He also said he was type 2 himself, so he had some understanding of the whole thing!

Oceana: still not impressed that you used to have that policy, but I'm glad you've changed, and you have a good manager there. I still won't be visiting you though.

Joe Solowiejczyk workshop

2010-05-21T13:59:00.000-07:00

Tonight I was very lucky and got to go and see Joe S give a speech/talk/workshop. The focus of the workshop was the family approach to teens with t1. It was fascinating and wonderful to be in a room of families living with d.

Joe is a very inspirational guy; he spent as much time talking to the kids as he did to the adults. He discussed approaches to angry kids with type 1 - or defiant ones. It was excellent, I highly recommend seeing him if you can.

What was awesome was I got talking to a girl before the talk, who was there with her parents and brother. She was yonger than me - I'm terrible at guessing ages, I would guess 13 or 14? We chatted a little, her parents said that they were really struggling to keep her glucose levels within range. I took over my Contour USB testing kit to show her, and the girl was really impressed, especially as I pointed out you can just plug it in to the computer and it makes lovely graphs and stuff. She said how she doesn't like to talk about, and I told her I was the same when I was her age (er, but not in a patronising way).

Near the end of the speech, Joe asked us [t1s] what the biggest challenge was. I said that for me, the biggest challenge is that type 1 can be such a lonely condition, and that it's vital for people to be in touch with one another. He jokingly said "well, do you have a phone number you can give the parents?!" so I replied "no, but I do write a blog!" to which he said that when he put up his contact details on screen, I would be welcome to put up my blog details there too. So I did! I hope that some of you reading were there tonight. It was wonderful to speak to and meet you all.

European bloggers!

2010-05-19T08:59:00.000-07:00

The second edition of th Bureaux Carnival will be hosted here on Click of the Light on May 24th.

The theme is 'My First Day'. Include as many 'firsts' relating your condition as you'd like!

This is a last minute reminder to get your submissions in as soon as possible - the deadline is tomorrow (although I'll give you som slack if it comes in late!)

email bureauxcarnival @ googlemail.com

Please include the name of your name and the name/url of your blog as you'd like them to appear and a short description of the post.

It's been a few days.

2010-05-18T11:49:00.000-07:00

A lot has happened over the past few days. The most important thing is that I have moved back to Birmingham, and am now living back with my mum. Not my ideal, but until I have a job and can afford to move out, this is where I am.

Observations over the past few days:

24u lantus leaves me running slightly high during the day, but I don't hypo overnight
26u lantus leaves me at decent levels all day, but I hypo overnight

- I don't have a pen that will allow me to do 25u, although I am thinking about doing 24 + 1 extra from the 1 unit pen I have. It might sound stupid, but the thought of doing two injections per night makes me feel ill :\ do not want. But, I'll try it.

Just to point out that I went up to 26u about a week or so ago.

Last night, I was 4.9 before sleep. I wasn't happy with that - I know that I tend to drop, so I have been going to bed on slightly higher numbers recently. So, 4.9. I had 2 cookies (aka 20g carbs) and set my alarm for 3am.

11.30pm - 4.9 + 20g carbs
3am - 7.3
8.30am - 4.8

...yeah I'm pretty glad I had the cookies.

I'll try the 25u when I can get my hands on my 1u pen (which is buried in a box somewhere).

Any thoughts, suggestions, comments? Ideas, advice?

Exercise...or not.

2010-05-14T12:45:00.000-07:00

My post tonight is going to be pretty short, for one reason: at present, I do next to no exercise, at all.

But I'm hoping that's all going to change soon. I really want a new hobby. So I'm looking to take up something new and different...pilates is almost a certain, as I need to deal with my back/posture issues, and I hear pilates is good for that. If nothing else, it's more energy that I'm expending at the moment.

I recognise the importance of exercise in helping to maintain good control; I am just far too lazy. Recently though, as I've said, this is changing, so I'm hoping in the coming weeks/months I will have a new hobby and a new body (haha okay I can only dream...)

***

European bloggers! Yes, you there! I am going to be hosting the next Bureaux Carnival here on May 24th, which is far too close for my liking!

The theme this day is: My First Day. This can be broadened out to your first memory. What's the first thing you remember about your condition (because this Carnival is not just aimed at people with diabetes, it's for anyone living with a chronic condition)? Do you remember your diagnosis?

Please send submissions to bureauxcarnival @ googlemail.com by May 20th. I realise that is less than a week away and I do apologise, but get them in and see them up on the 24th :)

Day 4 - to carb or not to carb, that is the question

2010-05-13T13:13:00.000-07:00

Day 4 - To carb or not to carb. Today let’s blog about what we eat. And perhaps what we don’t eat. Some believe a low carb diet is important in diabetes management, while others believe carbs are fine as long as they are counted and bolused for. Which side of the fence do you fall on? What kind of things do you eat for meals and snacks? What foods do you deem bolus-worthy? What other foodie wisdom would you like to share?

I grew up with my parents giving me the mantra of 'all things in moderation'. So I could have sweets - at birthday parties. And I could definitely have chocolate - when treating a low, or before PE or swimming. I guess I never really missed out on anything because I did have everything, just not all the time.

...Well, that was when I was young enough for my parents to have the overall say in what I ate. Cue age 18 when I went onto MDIs (yes, I stuck it out on 2 injections a day for 15.5 years) and all of that went to pot. Mainly I ate all kinds of cake, chocolate, sweets etc - the things my parents and I had always kept a close eye on, that I could now eat freely as I could bolus for them.

Nowadays I have calmed down somewhat and I would like to think I am back to having a fairly balanced diet. My plate at any given meal will usually have some form of carb in it (cereal, bread for breakfast; potatoes, pasta, rice etc for the others) although I am making a conscious effort at the moment to make sure the carb part of my plate is the smallest (aka eat more salad!)

There are only two or three things I really avoid, and this is because through experience I have found that my body does not handle them very well - but again, I WILL eat them if I choose to. Pizza is one of them; I adore the stuff, but it plays havoc with my glucose levels. So I generally won't have it, unless I'm going out for a meal or something and we choose to. The other thing I won't really have is sweets: pure, sugary, jelly type sweets. They rocket me up and drop me back down again. Pasta can be difficult, but sometimes I can manage it.

I am a firm believer in that as long as you are happy with the way you manage it, then carbs are a definite go-go. Because we people with diabetes? We are totally individual. What works for one of us does not work for the next person. Me personally, I'm going to look into going onto a low-carb diet for a while, just to see how I find it. It's just an experiment for now.

Day 3: Your biggest supporter

2010-05-12T13:05:00.000-07:00

Sorry to be a total fail, but for personal reasons, I am going to politely bow out of this one.

To make up for such a horrendous post, I offer you the ultimate in cute:

"mmmm, YUMMY!"

Day 2: Making The Low Go

2010-05-11T14:00:00.000-07:00

Day 2 - Making the low go. Tell us about your favourite way to treat a low. Juice? Glucose tabs? Secret candy stash? What's your favourite thing to indulge in when you are low? What do you find brings your blood sugar up fast without spiking it too high?

Me, I'm a juice girl. If I get it right (aka I actually measure out my juice rather than just guzzling it), I can avoid the spike. Most of the time though I flip into panic mode when I go low and just grab some juice and knock it back, which is why I'm thinking of switching to Glucotabs. I hear very good things about them, plus they can come in a handy little tube, so that's a bonus.

But at the moment, I'm using the 200ml cartons of orange juice from Tesco (it's actually the Tesco basic basic stuff) which if memory serves correctly has roughly 18g carbs per carton.

I tend not to follow up with slow-releasing carbs, unless I've really hit rock bottom (and I won't have the slow releasing carbs until I'm over 4). I find otherwise I am way up in the teens/20s later on.

My all-time favourite slow-releasing snack is honey on a slice of white toast with loads of butter. Wow, that's like heaven on a plate for me. I only EVER have it after a bad hypo, and I love it.

If I'm out and about, I usually have a carton of juice in my bag. I run the risk that one day, it's going to explode all over my bag, but for the moment it will do. I keep lucozade or juice close to hand in my room in case of night time hypos.

Remember; this is just how I treat my hypos, it's not advice ;)

Diabetes Blog Week: A Day In The Life

2010-05-10T13:46:00.000-07:00

Today is day one of Diabetes Blog Week! Karen has come up with the awesome idea of all of us d-bloggers posting about the same thing each day. So here is mine for today!

8am: wake up, feeling pretty groggy. Levels are at 9.1, which is not good, but not unexpected - I had a late night attack of the munchies, but that was bolused for. Ho hum.

8:30am: I'm up, dressed and washed. Sort of ready to go, but not quite. Today I have someone coming in to cook for my residents (I live in a residential community of adults with learning difficulties), and she's never been to our house, so I show her around and she gets on cooking quiche. I have a banana and a bacon roll for breakfast, which I estimate 55g carbs for in total. So, 11u + 1 correction.

It's a lazy morning and I spend most of it chilling out. Mid morning I make a raspberry/milk/banana smoothie thingy, which I eyeball and guesstimate at 30g carbs. Inject 5u Novorapid.

12:45pm: lunch time! I'm 5.8, but feel lower than this. We have yummy quiche and home grown salad. I have a HUGE serving of quiche though (the girl who cooked it is a good cook!) and using my previous knowledge (HA!) I guess at 30g carbs, but I'm aware I still have some active insulin hanging around, so instead of my usual 1.5:10g, I do 1:10. After lunch I do some domestic-y things, like file away bank statements with my residents and get washing out.

Again I was able to chill out this afternoon. I fell asleep - the kind of sleep where you don't realise you're asleep until you wake up. Except I woke up around 4pm and felt like the world was spinning. A quick test and I'm down to 1.8. Cue me having a hungry hypo, where I proceed to drink too much apple juice and eat 6 ginger cookies. OOPS. After a little while I felt back to normal, but didn't dare test for fear of what the cookies had done. I bolused appropriately for them, and prayed that things would balance out.

I'm not going to fib - I didn't test presupper at 6pm. Supper was a big salad and some toast and ham.

I'm now 17.9. I don't normally like to flounce my numbers around (far too many negative experiences of being judged when I was younger). But this is you guys, and I know you get it. Safe to say I'm bolusing 4u for that. And staying up for another 2 hours to make sure it comes down.

Sigh. Guys, today has been another long day, and one of those days where I wish things would magically keep my levels in place. My personal life is stressing me to hell, which isn't helping.

But I'm looking foward to Sunday, which should be the day I get to move back home to Birmingham. I'm also looking forward, and feeling motivated by, this week's blogging activities. Bring on tomorrow!

Vlog #3-ish

2010-05-09T13:30:00.001-07:00

The part that isn't d-related!

Vlog! Yay vlog!

2010-05-08T16:23:00.000-07:00

Okay so I worked up the courage to do another vlog! Youtube cut me off half way through, so it's in two parts.

At some point I'll work out how to embed those; bear with me!

Edit: at the beginning, I say I'll speak about something that isn't D related. I forgot about that bit. Next time!

Type one: the lonely condition, until recently

2010-05-08T13:13:00.000-07:00

This post is written for the first ever Bureaux Carnival, hosted by Becky!

***

I have known type one for my whole life. Well, the life that I can remember. I was diagnosed aged 2 years, 11 months and 19 days, to be precised. At that point, all my parents knew of type one was the existence of it; they did not know any other type ones (except for a footballer whose name I can't remember, who gave me a signed picture of him many years ago).

So: off we tootled on a few British Diabetic Association (now Diabetes UK) holidays, through which I became a member of the 'Tadpole Club'. I had a jumper and I wore it proudly! I met other type ones there, but, as I sometimes feel now - being as I had not (in my eyes) experienced a life without type one, I did not know a life with type one. I was just who I was, type one was part of me, it wasn't something extra. I hope that makes sense!

Anyway, that ultimately left me feeling as though I had not connected with anyone there, and thus I did not sustain any real friendships.

Until about a year ago, when I joined the fantastic Diabetes Support Forums. Finally, I met people that had type one as long (and longer!) than me. I found a connection in some people that means more than I can possibly explain words.

Now I feel like I have a group of wonderful, amazing, supportive, caring friends who care because they know. I don't have to try to explain my frustrations - they know exactly what I am talking about. They are my safety net.

I'd like to point out that they are friends not only are they people with type one, but also because they are just wonderful people. I do have my own little theory that all type ones are resilient, understanding people - partly because they have to be, and partly because they have learnt to be (that's not to say they weren't resilient and understand pre-type one!)

Because I am type one, I have sought out other type ones. I have read blogs and websites and forums and countless articles about type one. I finally feel slightly at peace with this condition, because I know that I am not alone. I know I have amazing people to talk to when I just want to give up. I have friends.

Numbers are more than numbers

2010-05-06T15:19:00.000-07:00

Just a short post: I'm currently sitting at 22.8. I'm grumpy, tired, drinking like a fish and weeing like...something that wees a lot. I had chip shop chips earlier (NEVER AGAIN), which I have successfully bolused correctly for in the past. Basically I split the bolus.

This time, no good.

It's made me think of two things: one, how much a number means to type ones. I know how 19, 20, 21 feels. I also know how 2 or 3 feels. They're just numbers, but to us, they're also frustration, lethargy, weak knees, sweating, shaking, so on, so forth. They represent a lot.

So I'm very grateful to have you guys around when I am out of range, and know that you know how this feels.

It also made me think of my previous post. I'm not going to give myself a hard time about this high, because I did everything I could to try and keep my levels in range; I was in the 6s and 7s, took a 5.6 mile walk, then I had the chips. Still, I'm up in the 20s.

Sigh.

It's got me thinking

2010-05-06T13:26:00.000-07:00

Sam over at Talking Blood Glucose often writes very frank and honest posts about her rebellion stage, which is now leading to complications. I enjoy the fact that Sam is so open about it - it's not a taboo, or something she wants to hide - quite the opposite in fact, she wants to educate.

It got me thinking about me, and complications. I feel incredibly grateful that I have had no complications of type one diabetes as yet. This is despite the fact when I was in secondary school, I'd be lucky if I tested my sugars once a week, let alone the 6+ a day I do at the moment. I think it is also down to the fact that I led a relatively balanced lifestyle - I ate decent food, didn't snack all over the place, did some exercise each week. Which kept my hba1cs in the 7s, which the hospital were always pleased with.

My highest hba1c ever is 9.4, which I got in autumn last year. This shook me right up, especially as when I went to the opticians they had trouble getting the right prescription for me and told me it was because I had unstable blood sugars. My last was 7.4, which I am over the moon with, and I'm hoping to get it in the 6s.

I think that over the years, the main thing I have learnt about type one is as long as you are doing everything you can to keep stable BG readings, do not give yourself a hard time over the odd one or two out of range. I'll always try to work out the possible reasons of an excessively high reading; sometimes though, there isn't a reason, it's just the damn diabetes fairy sprinkling her sugar dust all over you.

A trip to the dentist.

2010-05-04T14:25:00.000-07:00

Today I went to the dentist (short version: I have a cavity and some very sensitive teeth, need to go back next week for a filling).

I need to explain that right now I'm in a pretty low mood, and I'm feeling the weight of things. So: what got me today was the way diabetes manages to come up at EVERY opportunity. I filled in the medical form at the dentists, handed it in, waited to be called through.

The dentist was very nice, but asked me a question that made me want to tear my hair out: "what are your blood sugar level readings normally?" cue me having to bite my tongue and tell her that my average is 7.4%. I realise that she was just trying to do her job and that being a dentist doesn't exactly mean that she has to be knowledgeable about the disease, but if it's going to affect my treatment (she followed up with 'we don't treat people with levels over 13' - what, hba1c of 13 or a bg reading of 13? I was like 15 at that point due to miscalculating my lunch), I'd appreciate that she asks the right questions!

Normally? Seriously? What are my sugar levels like NORMALLY? Well, it depends on the day. It depends what I've eaten that day, it depends on the time of the day, it depends if I'm ill or stressed or if I've exercised in the last 24 hours. It depends on if I'm planning on exercising later in the day, or if I'm going to eat something in a few minutes. It depends if I've drunk alcohol in the last 24 hours. It depends how my body is feeling! It depends on the time of year, the temperature...it depends on everything, and every day I have to make calculations according to all these factors.

Please excuse my unnecessary rage over this...it just got to me :(

Making things bearable.

2010-05-03T08:54:00.000-07:00

I intended to participate in Chronic Babe's blogging carnival this week, but for personal reasons I couldn't make the deadline.

But the topic, learning to live with pain, really got me thinking. As a type one diabetic, I do not experience constant physical pain due to the diabetes. I get it every now and again, if I hit a sore spot when injecting, or I've managed to accidently twist my finger pricker to number 5 instead of 2 or 3, or if my Lantus burns when it goes in.

It made me look on the flip side: how do I find the FUN in type one? To be brutally honest, I don't think there are many ways you can see type one as fun; but being the type of person I am, I need to throw some lightheartedness onto the situation.

One of the things I do to make things a bit less serious is to have funky cases for my kit. I carry around my insulin pen, testing kit and spare needles with me, all the time. So today I bought a new pencil/make up case (for a grand total of £1 from Primark!) that is brightly coloured, has hearts on it, and definitely doesn't look as if it's carrying around my life line.

Another thing I do, along with a couple of other bloggers - namely Sam and Tom - is play 'numberwang'. It might sound stupid, but when chatting, one of us will say 'numberwang' and then we test and see where we're at. It takes the seriousness off the situation for a moment.

Diabetes is constant, it is 24/7, it does not take bank holidays, it does not give you the day off on your birthday, it doesn't ever go away for the weekend. Being able to play on the lighter side of things allows me to remember that yes, I am a type one diabetic - but this disease is living along side me, with me, and does not control me.