Monday, 20 December 2010

Pick your battles.

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.

Sunday, 19 December 2010

Speak of the devil

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!

Friday, 17 December 2010

Changing old habits?

...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!

Monday, 13 December 2010

James!

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.

Monday, 6 December 2010

Good days and bad days

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.

Sunday, 5 December 2010

Ouch!

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!

Thursday, 2 December 2010

The battle? Half won!

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.

Wednesday, 17 November 2010

Night time testing - keeping your eye on the target

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

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.

Monday, 15 November 2010

The cog is still in motion, apparently.

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!

Monday, 8 November 2010

Yoohoo!

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?!

Sunday, 7 November 2010

Testing: just a snapshot of time.

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?!

Saturday, 6 November 2010

'How do you do it?'

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.

Thursday, 4 November 2010

The power of positive thinking.

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 :(

Wednesday, 3 November 2010

3 cannula fails, in a row.

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!

Tuesday, 2 November 2010

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

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.

Monday, 1 November 2010

Friends for Life UK 2010

This past weekend I was lucky enough to attend the Children With Diabetes 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.

Tuesday, 21 September 2010

Pumping!!

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!)

Thursday, 16 September 2010

All aboard the change train.

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!

Tuesday, 31 August 2010

Now the CGM has gone...

...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.

Monday, 30 August 2010

CGM, days 4 and 5.

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!

Saturday, 28 August 2010

CGM day 3.

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

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.

Friday, 27 August 2010

CGM: day 1 & 2 of 5.

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...!

Monday, 23 August 2010

Good moments.

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?

Wednesday, 18 August 2010

Poor, poor blog.

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!

Friday, 30 July 2010

Catching up!

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!

Wednesday, 21 July 2010

Missing in action!

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...

Monday, 12 July 2010

All quiet over here...

 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!


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!

Thursday, 1 July 2010

July, already?!

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.

Tuesday, 29 June 2010

101 things in 1001 days.

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!

Friday, 25 June 2010

Perhaps slightly controversial?

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?

Tuesday, 22 June 2010

Things I have learnt in the past week.

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.

Monday, 14 June 2010

Bullseye!


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!

Sunday, 13 June 2010

Nasty low.

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...

Thursday, 10 June 2010

Me, without the D.

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?

Saturday, 5 June 2010

Inspired by Emily...

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...

...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!

Wednesday, 2 June 2010

Why I fail at basal testing

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!

Monday, 31 May 2010

Why I have a love/hate relationship with eating out

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!)