Thursday, 28 July 2011

Memory like a SIEVE.


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!

Thursday, 21 July 2011

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

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,


Sunday, 17 July 2011

Wedding stuff!

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 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!

Monday, 11 July 2011


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.

Sunday, 10 July 2011

Nights like this.

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?!

Tuesday, 5 July 2011

Walking. And not diabetes failing.

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'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.