Friday, 14 December 2018

Ramblings

It's that time again - it's 9:45 on a Friday night! Coincidentally the exact same time and day that it was that I posted my most recent blog post, which actually isn't so recent since I posted it in June, and it's now December. I've started calling myself a sporadic blogger these days, I neglect this blog not because I want to but because I struggle to find time and motivation. I need to get better at it! It feels right, and good, sitting here word-vomiting all over the internet.

I suppose I should talk about diabetes, right? It's funny, I spend my days thinking about diabetes, about what my blood sugar is, how much insulin I should take, but I often run out of things to say about it. It's a small part of my life, and as much as it has taken up residency here, I still manage to keep it small, I keep it in a corner, sometimes that's good and sometimes not so good and sometimes I can't really control what it does and it runs up the stairs even though I've told it it's not allowed up there - and to stay off of the bed!

I took my words and my ramblings and my diabetes onto a stage again this year - at the Diabetes Professional Care Conference, to talk about how important the 'Transition' stage is in young people with Type 1 Diabetes. Thankfully it was received very well, it was my first public speaking jaunt for a long time - still got it! I was humbled by the amount of Healthcare professionals who approached me and the other speakers afterwards to ask about how they can make transition smoother for their patients and how they can get them to engage after they've moved to adult clinic. I don't get much time to do loads of advocacy stuff anymore now that I have a full time job, but when I get the chance to do it it feels really good.

I'm still on injections, still trying to get my pump back. I get it out of the draw every once in a while and just stare at it - something so expensive, and so valuable, collecting dust. I understand that I'm not quite "there" in terms of getting it back but I wish someone would just let me try, let me prove it's worth. I feel like it's the motivation I need and it's so close (literally, in my drawer) but so far away, in the hands of my diabetes team - it's a shame we don't get trial runs. I feel like 12 year old me again, fed up of injecting 5+ times a day, the difference being it was much easier to get a pump back then.

I'm hoping for a Libre, the consultant I saw in clinic a few weeks ago told me she was going to ask the wider team about Libre funding for me - she still told me it's "unlikely" - at least she's not giving me false expectations...however, I can't have my pump back so let me try this properly, I've already proved the Libres worth with days and days of data showing how much better I am at controlling my blood sugar with it. It's so frustrating having to prove everything to someone who is so far removed from your life. Don't get me wrong, I believe in my team and I do think they're good people, it's just frustrating. Note to self: Use words other than 'Frustrating'.

I am thankful for the psychologist at clinic though, psychologists are a luxury in the world of diabetes it seems, especially in adult clinic. It's so helpful to go through my thoughts and feelings and understand why sometimes I feel the way I do. One huge thing I found is that I tend to invalidate my own emotions, especially when it comes to diabetes. I don't do it with everything, but I do it with things that are ever so slightly negotiable, like getting upset over a boy or something.

I've been learning that to be emotional doesn't make me weak. I never thought that, nor do I think that about anyone else either, but it was something I always held against myself. Everything is relative.

Speaking of teams, I saw my old team a couple of times this year, they asked me to help them out with their 'transition days'. They hosted sessions for the young people under their care who are about to transition to adult clinic and I was there as a kind of, "Hey, I've been through this so I can answer your questions!" It was a lovely experience and so nice to see my old diabetes team, especially my old consultant, who did so much for me.

Twitter-land is still a significant part of life with diabetes, I have taken a step back though, I don't tweet much at the moment. It's a very divided world at times and I just can't be bothered to get involved. One thing I did get involved with though was the whole Diabetic/Patients with Diabetes debate - I feel like my opinion is so controversial on this but I'll say it anyway, and I'll say it even louder for the people in the back - I do not care what I am called. If someone says "Are you diabetic?" I say yes. I am diabetic. You are correct. Because I know that it isn't all that I am and I don't for one second think that other people think that either. But then again, each to their own, if it upsets you then sorry, it's just my opinion and I respect other people's opinions too but these days, if I can, I choose my battles, and this is not a battle I care to fight.

I think I'm going to wrap this ramble up now. Well done if you read all the way to the end. I don't imagine many people will read this but if you did read it - thanks! Hopefully I can write something a little more interesting to post other than all the thoughts that are swirling around in my head, but at the same time, it feels nice to write them down.

3 comments:

  1. Oh transitions are the very worst. Good job for lending a hand.

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  2. Type 1 diabetes is one of the most common diabetic in the world. Type 1 diabetic is diabetic who attacking child and usually caused autoimmune disease, genetic, or beta pancreas cell damaged. Transititon in these article really bad to me. I can feel their feeling who have insulin injection everyday. diabetescentrale.nl/informatie-over-diabetes

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    Replies
    1. i am agree and must care more about diabetes ,diabetescentrale.nl/ .Thanks u

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