you have no idea how much i really hate January and how much i really hate diabetes. I'm just so tired of it, I'm tired of having to accommodate for this thing in my life , I'm tired of having to do blood tests, I'm tired of hypos at midnight the night before exams, I'm tired of all the appointments , I'm tired of never getting it right no matter how hard I try. I'm just tired of diabetes.
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| having a bit of a breakdown on sandeep during my hypo.... |
i was gutted with the a1c of 8.5 , i knew it was coming. i know it wasn't something i did because i know i did everything to get those stubborn highs down. set changes, insulin changes, correction doses temp basals. you name it i did it and they just would not come down. when i went to my gp that day i could see by the look on his face he was going to lecture me, what is it with doctors and their way to make you feel small? i hate it. i hate being lectured by someone who has no clue how hard it is to deal with type 1 diabetes. i hate i'm made to feel that way because he wants QOF points not because he actually cares in any way about helping me to control my diabetes. i hate feeling like i need to explain myself to him when he doesn't understand how type 1 is managed.
then the hypos have started again since being in exams. in the middle of my mock i had to test every 10 minutes cause despite having hypo treatments every time i tested i still ended up going hypo. luckily this was a mock and thank god my college teachers are really understanding about my diabetes and he allowed me to take my mock home and finish it off there. then on thursday night when i had my first exam the next day , i was up at midnight with 3.2 that didn't come up for 45 minutes.
most of all i feel guilty for feeling like this. i feel guilty because i know how much worse it could be. it could be something that isn't manageable although my diabetes certainly doesn't feel manageable right now. it could be so much worse than it is and i am grateful that its 'just' diabetes but at the same time i really really wish it would go away. i feel guilty for feeling like i am when i know so many diabetics who just get on with it and manage it perfectly well.
i just can't wait to get January over and with trips to Oxford and London seeing some members of the d.o.c i'm hopeful my mood will improve and i'll be back smiling and not having these crazy bg
I'm a commissioner for diabetes services (and soon to be hopefully medic) and I always try and keep a hand in reading patient blogs because your voice always gets lost no matter how hard we try to keep it at the forefront of things. It's a failure in the system but I just wanted to say thank you for having the courage to keep sharing even when you feel really low about it all. I learn a lot from these stories. What you're doing for all involved in diabetes is a really excellent thing and tho I can't even begin to understand what it's like to live with this every day I have so much respect for you. Easy to say but don't give up - we need you! :)
ReplyDeleteYes - we all feel that way sometimes... and sometimes it seems - a lot of the time. you're right that in the end, we will all "get on with it" - but trust me - few are "always" managing it "perfectly well" hang in there =)
ReplyDeleteI totally understand how you feel, I'm trying to revise for exams and they make me stressed which puts me on a bg rollercoaster. And then I get more stressed out because I can't concentrate which makes it even worse. My uni allows me to sit my exams in a separate room and take 20 mins rest break per hour, they don't understand that sometimes you might need more than that, yes you can often correct a hypo in that time but they obviously have no idea how hard it is to concentrate on anything when you have high sugar.
ReplyDeleteI think more than anything it would be nice to get recognition for how hard you have to try everyday with diabetes; mine never seems to be perfect but that doesn't mean I don't try my absolute hardest all the time. And when you get a high A1c even after trying, a telling off just makes you want to shout that they should have a go.
I think we all (T1Ds) feel that way sometimes.. Hang in there! =)And I think there are far and few who really have it "perfectly well managed" all the time. Sometimes, I'll just completely feel defeated about it all ... But then what? You're exactly right - we will all "get on with it"!
ReplyDeleteHang in there, H.
ReplyDeleteDiabetes is HARD. SO hard. It's completely normal (expected?) to feel crappy like this sometimes. Heck, maybe more than sometimes.
Keep your chin up, and focus on progress, not perfection. You can do this.
The more you get involved, the more crappy it becomes. Frequent testing means always tensioned-mind.
ReplyDeleteNothing is perfect, neither our body, nor the figures (BG). Learn what we need to control and manage and do it. Simple.
The early you learn the better. This is from Prickly, the Outlaw!
Gosh. Memories of 30 years ago are coming back to me. The HbA1C has been a bane on my life for three decades. Every hospital visit I would dread that one result, it was worse than exam marks, because I could do something about exams (work harder) but my HbA1C just would not respond. Remember, this was well before QOF, the tyranny of HbA1C was not caused by QOF; QOF just spread it from hospitals to GPs. The problem is that clinicians treat HbA1C as the gold standard in determining whether diabetes is being treated well. It isn't.
ReplyDeleteYou rightly point out that it is just ONE figure, and furthermore, it really isn't that accurate as an "average" (though, to be fair, it is all that the clinicians have). I have had HbA1C taken two weeks apart and one was "your blood sugar is out of control, you have to do better" and the other was "you're doing well, keep it up". They cannot both be right, two weeks apart. Because of the chemical measured and how it is measured, the later blood sugars in the "average" range will have a bigger contribution than the earlier ones: that is not anyone's definition of an "average". But try to point that out to a clinician, try to point out that in an average you want *all* the period measured and have an equal contribution from every day in that period.
Then there is the actual target figure. I am a type 1 diabetic, I will *never* have the blood sugar of a non-diabetic. It just isn't possible. The question is how close you want to get to the blood sugar of a non-diabetic, and what compromises you want to mek. So please, clinicians, understand this. You have an idea of "normal" HbA1C, but I will *never* have normal blood sugar, so I will *never* have a normal HbA1C. The important point is to look at my life and realise how you can make it better, not how to make me be a non-diabetic.
For the record, I have been a bad diabetic, but I am a better one now (but I will never be a perfect one). During my early 20s, when I was a student I went through a period of very high blood sugars. My excuse was this was before human insulin and before blood sticks were readily available. But that is an excuse, I was simply living my life, or as the consultant was to tell me later, I went through the "holiday from diabetes" that many young people go through.
In retrospect, for three years I felt ill all the time (you know what I mean: the irritability, the muzzy head, the thirst) but because I felt like that all the time it was "normal". In those days diabetics had their wisdom teeth out under general anaesthetic, and when in hospital for that, my blood sugar was tested and the hospital told me they would keep me in to stabilise me. I refused to stay in, but agreed to see the diabetic consultant, and a couple of months later I was back on track: rather than an exceptionally high blood sugar (and feeling ill all the time) I had a HbA1C that was better, but one which I felt fine.
Great blog post - I really empathise with your situation as I encounter this from time to time with my diabetes (T1).
ReplyDeletePersonally I really object to the idea of doctors being paid QOF bonuses for ticking boxes and regurgitating guidelines without any thought or understanding about what's going on for the individual. It just leads to dumbed-down care (or non-care to put it more accurately).
I find it sad that doctors are so uneducated about T1 diabetes. You'd think that as a relatively common disease, there would be better training for clinicians.
thank you everyone for these comments :-) it made me smile seeing so many people comment
ReplyDelete