18 May 2012

Diabetes Blog Week: Introducing 'D'

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.






Okay! So first off, please excuse the less than 'sophisticated' style of writing today, as my blood sugar is currently 3.3 (60) which is completely bizarre as I had pasta for dinner! And I guess I'll start there really...

1) Diabetes is not a science. And by this I mean you can spend your entire life on a continuous glucose monitor, looking for 'patterns', eating exactly the same thing everyday etc... and there is no way to predict what will happen. I under-bolused by about 1 unit for dinner, just because I'm religiously trying to avoid lows at the moment (hospital appointment in 10 days and they're breathing down my neck about hypos), and it still went low. What's more, 15 minutes previously it had been 6.6 (120), and I only tested because of the 'low-signs'.
And this unpredictability is one of the hardest things about diabetes, which I would like people to know. How demotivating it can be when you give so much and get so little back. For as long as I can remember I have been a perfectionist, always feeling that nothing is ever good enough, and I know that this is a result of my diabetes. I don't think anyone who is not diabetic can truly understand how a simple number could get to you so much, but it does. A low or high first thing in the morning (especially a high) - I know this sounds cliché but it is like a stab in the heart. You just think why?
Especially Monday before my first AS level exam, I was like why today of all days?! It felt like diabetes was mocking me, showing once again that I am just the passenger and that, no matter how hard I try, he will always be at the wheel steering me along his own impossible road. Feeling so out of control, my friends and peers may mock me for not being happy with a 19/20 for an English Essay - some may even think I'm attention seeking - but sometimes that does genuinely feel like it's the only thing I've got. With teachers, I need to hear them tell me to my face that I'm doing well, because everyday it seems like Diabetes shows in his own unique way how much I am failing  - how far I fall short. Today for example I was meeting one of my teachers to discuss my poetry, and he never really said 'well done' or 'these are good' or anything. Maybe I am just not a good poet (that's fine - bit soul destroying but best to know the truth now!) but I just wanted something. So that's what I'd like people to know I guess -that this need for praise and this feeling that I'm not good enough, it's not because I'm obsessive or a teachers' pet - it's because I need to feel like I've achieved something. That although a bunch of numbers on a screen may mean nothing to you, they can break me and doing well at school etc... it's the only thing that helps to stitch me back together I guess. It can never truly fix me - no amount of good things can do that, and make me forget about D (D has a way of making sure he isn't ignored for long!). For example, when I'd won the year prize two years ago in Year 10, I was so excited, but my BG went low so all I was thinking about when walking up on stage, was ok keep moving feet, don't trip... not exactly how I'd hoped that moment would be! And then when I wrote my name in the book... looked like a four year old who's just learnt how to hold a pen!

2) A few people have addressed this in their blogs, including Jess on her Me and D blog. That I am a diabetic. Pretty obvious but I'll explain! This is 24/7. Every day, every minute, I am diabetic and there is a tube inside of me keeping me alive. That is the reality. And of course the last thing I want is for people to look at me and think 'diabetic', but at the same time I want some recognition of just how hard this is. I think it's gotten to the point where we're all so used to it at home now, it's just another thing. But for example today when my parents go on about testing strips on my floor, getting at me for that - my mum was in my room saying this just as I was reading through all the blog posts for today's topic. And part of me did feel like screaming "Is that REALLY important!?" I have a frickin' tube stuck in me, and you're worried about some strips! Don't get me wrong, I love my parents and cannot begin to express how wonderful they've been, but I think it's just been so long that it's easy to forget - easy to imagine that I'm used to it now. And, yes, I have grown more used to it. But that doesn't mean it is any easier - each day is a hurdle and at the end of everyday I will most likely have experienced one hypo (below 4 - 72) and one above 10 (180). All of which I can feel, when it's at that level.
I've never made a big deal out of it. Like Karen said in her post, maybe I've made it seem easy? But it is HARD! It's a complete emotional roller coaster, and sometimes I wish maybe my teachers could realise that too? I don't want sympathy, but when I'm doing well despite the crazy blood sugars and extra time I spend with set changes, downloading data and making changes etc.... not to mention the hospital appointments - like I've said, I'm feeling this pressure to avoid hypos, because the last couple of appointments they've been adressing that. Apparently I should only be having about 2 a week, and it's often more like 2 a day... so yeah, not great! And that's another thing - sometimes I feel that my diabetes is going well because we don't make a fuss, especially at school, but behind closed doors the reality is that I am having some difficulties, and it's very far from perfect. So sometimes I would like a little bit of credit for how hard I'm trying I guess. 
With diabetes, I don't ever stop thinking about it; it's always there, that little voice in the back of my head. And that's another thing with my peers, which I mentioned in one of my earlier posts. Yes, I may never have been drunk before. And yes, to them that may seem totally pathetic for someone who is 17! But if they'd had a severe hypo before, and knew what it feels to be so out of control with a high BG after a failed infusion set - they may not be rushing to try it in a hurry! I may seem dull, I may seem too controlled, (and therefore like a middle aged woman!) But you know what? I don't care! At the end of the day, I'm diabetic, so deal with it! But I think mainly, like Jess said in her post, when everyone's laughing and joking and everything, I'll join in and I still love life and enjoy it and everything - but the voice is always there. And I always feel like I can never truly break out of my shell. And then whenever cake's involved, what may be a fun lesson with food to everyone else is for me a debate: should I, shouldn't I eat it? What have my BGs been like today? What homework do I have tonight so can I afford to take the 'high BG' risk? Everything is a weighing-up-the-odds game, a Balancing Act. Nothing is easy, and yes there is a degree of sadness that my life will most likely always be like this, but then there are some positives I will come to next...!

3) Finally - this isn't a life sentence. Like I've said in my posts so far this week, Diabetes has made me a stronger person. I remember how people have said to me in the past, when I've been scared of a spider or not gone on a roller coaster, or have been fretting over an exam - they've suggested that I'm not brave, or that I'm not strong. Until you've been me in an exam with a low blood sugar (Wednesday) fighting to keep going even though you're shaking and feel so weak you might collapse (not an exaggeration); until you've spent your whole night throwing up after a failed set change, mouth so dry even though you've drunk water by galleon, and then you come into school the next day smiling like everything is normal; until you've put a needle in yourself everyday since you were 7 years old - I could continue this list for a while, but will stop here! If there is one thing I can be proud of myself for, it's how strong I am. But it's a strength and a bravery that is different to the 'stereotype'. Yes, I'm terrified of woodlice and spiders and yes upside down roller coaster freak me out (not least because I'm worried my pump will fall out and then there's a few thousand pounds and my 'life support' gone!) But I don't think many people are as brave as me in terms of putting on a smile even though inside you feel like crumbling. And I always try and stitch myself back together, because I have to. Because I can't afford to be sad when this is my life - there's no point being wistful because I can't change it.
I also think though, diabetes has made me a better person in terms of learning what's important in life. I'm not going to waste anything, because nothing is certain in life. I went from a normal 7 year old reading her Harry Potter books one day, to lying in a hospital bed faced with a lifetime with a chronic illness the next. I know not to take anything for granted! So I guess that's why I can become frustrated with people who complain how hard their lives are, saying how 'no one can understand how I feel!' Or the facebook 'F my life it's so tragic!' because maybe some idiot boy has dumped them or they haven't got a gazillion likes on a facebook photo... well to put it bluntly, you won't be getting much sympathy from me! And I'm not trying to guilt-trick anyone here, I'm just trying to give some perspective. 

Sometimes I worry there's this perception of me trying to be 'little miss perfect'; doing everything 'by-the-book' and that for some people it may seem fake maybe? And yes, to be honest it is. Because underneath all the hard-working, school-loving, never-goes-out/goody-two-shoes exterior, there is still just a seven year old girl who had to wake up too quickly, and is still trying to find her way in this scary and uncertain world she was thrown into. And it's never going to be easy. I will stumble and will never truly be 'in control' of D. But I will pick myself up. And I guess that's the final think I'd like people to know. That I'll always pick myself up - those of us with diabetes, like Kelly said in her post (which is amazing!), we're resilient! I've been knocked so many times that, like my poor fingers, I'm pretty much numb to the pain! Yes it still hurts, but I've learnt how to deal with it.

So yes, I hope that if you didn't know a lot about D before, that your eyes have been opened a bit! I just want to continue to raise awareness, so if you want to retweet this or some of the other blogs I have mentioned and linked, than that would be wonderful: continue the D-education! And sorry about the length; when my BG's low I actually act a bit hyper, so ramble on aimlessly and, of course, no one was here to shut me up!

Oh but just lastly (really will stop after this!) I just wanted to share one of the poems I wrote about my diabetes (wrote it about 6 months ago), that I felt fitted into the whole: 'beyond the numbers' emotional side of diabetes. It's about post-diagnosis and the loss of childhood really, like most of my recent pieces on my poetry blog. So yes, it's not the cheeriest (although I have written worse!)and definitely not one of my 'best' poems, but wanted to share it anyway!

Ivory Tower

My soul hides away
in an ivory tower.
It left me on my own;
to walk in darkness all alone
The road you built with hands that broke
the dreamer's heart in two,
Which splashed blood paint on the white rose -
a thorn-pricked red that within grew
a blackness unbeknown -
little girl overthrown.

She treads, a shadow in a world
that swallowed childhood fantasies;
which cannot be painted
in bluebird strokes,
nor lead her back to 
youth's daffodil clouds.

She is looking  for
her ivory tower;
the place her soul resides.
The fairytale she longed for,
the life that lived in dreams.
Invisible as she stands here
her wings broken - 
the crossroads near.

*

Sophie

Keep Smiling :)
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2 comments

  1. wow, this is truly a brilliant post :) and your poems are great :)

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    Replies
    1. Thank-you :) Loving your posts this week too!

      Poetry's my 'diabetes therapy' I guess! Basically all my poems are about some aspect of D, but it's a way to vent my frustration on paper as opposed to other people (think my parents get enough of the low/high mood swings!)

      Thanks for reading :)

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