4 May 2012

Diabetic and Smiling


My earliest clear memories are from nearly ten years ago. June 2002; the month I was diagnosed with Type 1 diabetes at the age of 7. Before that, my recollections are hazy as I genuinely cannot comprehend living without diabetes. Even if a cure was found someday, I don't know how I would be able to go back to my 'old' life, because this is my life.

I remember how determined we all were that it wouldn't change my life. From the beginning I was doing my own injections, much to the horror of family and friends, who thought my parents should have been doing then. I cannot thank my parents enough. As horrible as my mum said she felt at the time, it set a precedent for my future as a girl with diabetes, not a diabetic: it wouldn't control me. For the first few weeks my dad would have to come in at lunchtimes to help me test my blood sugar, but I was doing that by myself almost straight away too.

The decision was also made that we would, not 'ignore' my diabetes - we were always exactly 'to the book' when it came to managing it - but that we wouldn't make a big deal out of it. This meant that, apart from my hospital check-ups, we didn't really engage with the group sessions or holiday camps, and numerous other 'diabetes orientated' events that you can go to. Looking back, I completely understand why we didn't. My diabetes has never been plain-sailing, (I'll do a blog post sometime in the future all about the many stages I've been through, as it should be a comfort to anyone struggling a bit on a certain 'regime' - believe me, I'd tried them all before Mr. insulin pump arrived!) but I was always, as I've said, doing everything the 'right' way, eating the right foods, testing 'every two hours' etc... Probably part of my perfectionist personality although, come to think of it, that could be a result of my diabetes! My parents felt that: yes it is part of my life, but it shouldn't be 'what my life is about'.

However, as I've gotten older, it has been much harder to maintain this mantra. I think a lot of it might have to do with being a teenager and also confronting more hurdles like exams etc... But mainly, I think it is that, as I start to prepare to enter the 'real world', getting my GCSEs, A Levels, and now thinking about Uni - only now has it suddenly hit me: this is for life. I'm not going to get all wistful here about what could have been. My poetry is reserved for that and can be quite depressing at times, as a result! But when I was first diagnosed, I was too young to really understand. I remember my sister telling me at the time, that I was actually quite excited when I was packing to go to hospital - it was a 'new adventure'...! I was given cards, presents; to a young child that is never a bad thing! It was when I got home that I got a bit down. I vividly remember the only thing that would cheer me up, was watching the BFG, a film/book I'd always loved - and I share the main character's name! But then the 'regime' started, and that was that. I never questioned - it just seemed to click in my seven-year-old mind that this is what I have to do. The needles didn't scare me because, as much as I hated them, it wasn't a question of what I wanted anymore: it was as black and white as live or die.

I think though, I've only truly realised recently that this isn't going away. It isn't something I can ever just switch off. Diabetes is deaf to the pleas of just give me a break! It didn't care when I had my GCSE Spanish Listening, where my blood sugar rose to a delightful 19.4 (350) - as I'm sure many of you can understand, it would be hard enough in any exam, let alone one where you have only a set amount of time to get an answer down, and also can't stop without disrupting everyone else! It also went high during my AS Level Spanish Oral last week, which resulted in me fluffing up some of the spontaneous questions - but then I hate making 'excuses', and hardly ever do when it comes to my diabetes (and I can't imagine that many people in my situation wouldn't use it!) Recently my control hasn't been great - a lot of hypos and then when it does go high that overwhelming sense of guilt. The hospital seem to think that lows are terrible, and I get why - at the end of the day it is far more dangerous short-term, and there is the coma risk if it's too low. Mine can also go very low, yet I never really react (highs are always the worst for me). Again, I've heard of people who've been admitted to hospital if it's in the mid-twos. Mine was 2.1 (38) just earlier (so please excuse and spelling errors as I'm still feeling a tad dizzy!) and has been as low as 1.7 before. But then as I've said - we've never been one to 'let the diabetes talk'. It's: deal with it, move on, resume life. And I by no means want to criticise my parents for this, but it's the way we've always done it. I am the girl with diabetes, never The diabetic. But then, recently I've started to wonder if that's what I want. 

A few times this year, I've opened my testing kit to do my blood sugar, and I'm quite open with it now - I obviously don't wave my hand around so that those 'bloodphobics' will run from the room screaming, but at the same time, it's 'part of my life'. I didn't cause this, I need to do it to stay alive, so deal with it! Loads of people though, who've been new to the school, have stared at me in a confused way for about ten seconds, and then gone: "are you diabetic?!" The temptation is there to say: "no, I just do this for fun - you should try it sometime!" Although I have in the past had people asking me "oh, I wonder what it's like testing your blood sugar - it looks really cool!" And I've been like "OK then - come here - do you want to stick the needle in yourself, or do you want me to do it for you?" - They normally change their minds after that! The point is though - they had no clue. Before seeing the BG kit, I was just another ordinary girl, same as them. Which in all honesty is all that my parents, and at the start me, wanted. For this not to change my life.... but it has.

Diabetes is the thing that has defined me, and I do not say that with any sadness, or more importantly any shame. To some extent I'm proud of it - proud that I'm still here smiling, having achieved so far all that I ever wanted to - I managed 9A*s for my GCSEs, and most importantly that included Spanish (even after the listening fiasco!). But it hasn't been easy. And that's what I want people to appreciate. Diabetes doesn't give me a break, but neither does life. The first can't be controlled, but the second to a certain extent can. I just wish people could realise when I come in a bit late in the morning, they ask why I'm late, and I say "oh my infusion set stopped working in the middle of the night" - I wish they could know what that means. I wish they could realise how absolutely horrible a high blood sugar feels, and how utterly helpless it makes me feel. When it's really high, I can literally do nothing but lie there and wait for it to fall. With the Spanish listening, it took all the willpower I had to keep going and luckily it didn't jeopardise anything - much higher, and it would have. It goes too low, and I can't concentrate. It happened today in a timed English essay. My set had stopped working during the night, so I was pumping insulin in through the insulin pen this morning to get it down, and then I had the inevitable crash - the 2.1 I mentioned earlier - right in the middle of the essay. My hand was shaking, and I took 2 gluco-tabs and tried to keep writing. Luckily I'd pre-planned the essay, but if that happens in the real exam... I'm done for basically. At the end, I told my teacher that my BG had gone low, so it may be a bit rambling at the end. He said to me "oh Sophie, don't worry, I saw you ate something so it will be fine". Again, I am not blaming him for anything, as people are generally just not very 'with it' when it comes to this illness, but I felt like saying: "no, it isn't like that!" I don't just pop a few gluco-tabs and miraculously I'm OK again. Like I've said, I still feel a bit dizzy now, and that's five hours later - it stayed low for about 2 hours before it came up, even though I had food (didn't want to have too much as yo-yo diabetes would send it high later). No one truly understands how hard this is and, whilst I don't want them to look at me and the first thing they think is "diabetic", I don't want them to forget it. Maybe I am to blame for that. I never draw attention to it, and always try and laugh off a low or high because I don't want it to affect me or anyone else. But wearing that 'normaility' mask becomes harder each day (at home I tend to throw it off completely, as I my parents understand better - it does mean though that it is hard for them at times, and I feel guilty for that). I think, though, I need to accept that I can't be perfect - and hopefully then others will realise that too.

I joined the online diabetes forum two months ago and, apart from one time when I gave a girl advice on diabetes control at school, it was honestly the first time I'd spoken to someone with diabetes - in 10 years. And there are times when I have felt so isolated as a result of that. There is this whole side to me that people can never truly understand - something which has shaped everything I do. Yes, some of my friends may ridicule me for 'never having been drunk', but that's because I'm too scared of my blood sugar going low and no one knowing what to do; being there to help me. Although I understand that my parents had the best intentions, I always feel like it is diabetes which has taken the front seat. There is a library's worth of information about how you control the medical side, the numbers. As for the emotional side - it is forgotten a bit I think. And that is why I want to write this blog; that is why I love talking to people on twitter. I feel part of something and almost like I've found myself in the process. I've accepted my diabetes more in the past two months that in ten years, because I haven't had to hide it - haven't had to bottle up my feelings.

So thank-you to everyone with diabetes who has followed me on twitter, spoken to me on the forum, or read this blog. It means the world to me, as I don't feel like it's 'just me' anymore. I am proud to be Sophie the Diabetic, because ultimately that is the hand I was dealt, and I can't change that. What I can do is learn to accept it, and make the most of it; through doing this blog, for example, I hope I can make at least one person feel as I have felt these last two months. I've discovered that I'm not on my own, and no one should ever have to feel that they are - I hope that you can relate to some of my experiences, and learn that I'm still here smiling :) It has only made me stronger and more determined to live life to the full, taking every opportunity I have. Yes the mountain is that bit harder to climb, but Diabetes should never steal dreams; it should just make them all the more rewarding when you fulfil them.  

Thank-you everyone!

Sophie
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4 comments

  1. Inspirational. I am so proud of everything you have and most importantly will accomplish in your life.

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  2. Thank-you; that means a lot.

    Sophie

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  3. I have a friend who is type 1...I've been doing a bit of research on this recently but until now I hadn't even considered the emotional side. You've helped me see into a her life a bit more... I hope that I can understand and help her better now.
    Thank you so much for sharing this, you're amazing, and so brave x

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  4. Thank-you so much. It really means a lot to hear that, as that is ultimately the best thing that can come out of writing this blog; raising awareness. It is so easy to forget about the emotional side, as there isn't really any mention of it when you read about diabetes - it is very numbers, numbers, and more numbers! I think that is what can make it overwhelming at times though.

    Thank-you for reading, and all my wishes to you and your friend x

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