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New here, in denial, out of hope!

L

lilyfleur

Well-Known Member
Messages
59
Location
Lancashire
Type of diabetes
Type 1
Treatment type
Pump
Hi, I've never used a diabetes-related forum before so I'm not really sure what I'm looking for really, but I'm 23 years old, was diagnosed as a type one diabetic aged 11, and find I struggle just as much now as I did when I was diagnosed. I don't test regularly enough, regularly miss appointments, inject too long after food (if at all) and feel like it controls my life. It seems as if most other people hold it all together, or at least have a positive outlook and get there in the end, but I've found that even when I've REALLY put the effort in and got my hBA1c down to 7%, I've STILL felt constantly ill and it's left me feeling pretty hopeless that things will ever improve. I'm wondering if anybody else has had a similar experience?

Sarah
 
Hi Sarah,

I'm not type 1 so I'm not going to be much help - but welcome anyway. I'm sure the others will be along soon :D
 
Sarah,

I've been there like many other type 1's at some point, the feeling ill and hopeless comes from you having unstable diabetes and swinging constantly from high to low, missing injections, appointments and not testing doesn't help as you have already acknowledged!

I would start attending your appointments and ask for help from your diabetes team, there's a course for type 1's called DAFNE (does adjustment for normal eating) that teaches patients to carb count correctly and adjust their insulin accordingly, it also covers many other aspects of diabetes management and is a very worthwhile course to take, I and many other type 1's on the forum have been on the course and have had positive outcomes as a result.

Do seek help and don't let this continue for much longer!
 
Hi Lilyfleur

I've been a Type 1 diabetic for about 8-9 years now.
That's not as long as yourself, but I was very much the same.

I was definitely in denial and also very rebellious and defiant - or stupid, I guess you could say, given my health and life was at risk.
I hated the loss of control and feeling like the condition was controlling me and went into a nasty depression for about a year.

I would miss appointments, not test or inject insulin and eat more sugary foods than I did before I was diagnosed. There was definitely some subconscious fight going on somewhere...

Whenever I tried to be good about things, I would feel awful and started to think 'What's the point?'

I would guess the main reason you feel awful when you try to do well is because your body is used to your BG levels running high, so when they start to go down to normal levels, your body thinks you are having a hypo, thus making you feel awful.
This was one of the toughest things I had to get through when getting myself sorted. Fighting the urge to grab a sugary drink to stop feeling the hypo, even though it was false.
You just have to gradually work it down - instead of aiming for numbers between 4 and 7, aim for 10 to 12, then 7 to 9 and so on, bringing it lower over time, so the ill feelings are less.

Things really turned round for me when I changed doctors and my new surgery got me onto the DAFNE course.

I really recommend you ask your doctor, or diabetes specialist, about this and see if you can get yourself referred.

Now, I control the diabetes, not the other way round.
I can eat what I want, when I want (within reason), I feel much better physically and my BG levels are now within normal levels most of the time.
Going out is much better and hypo management is a breeze.

Initially, it can be difficult as you have to get your head around carb counting, but if you stick with it, it's more than worth it.

For someone who has been diabetic for quite a long time and followed a strict treatment regime, it can be a tough change, but if your control isn't great to begin with and you don't really follow the rules any way, it's much easier to slip into a new habit than trying to get out of an old one.

Sorry for the long post, but when it comes to advice I think that it's best to not skimp on the info.

I hope things work out well for you.
 
Thank you all :)

I was on an insulin pump for a while and that was when my hBA1c came down to 7%, where it stayed for around a year, but unfortunately I was having huge problems with my blood pressure (dropping so low I'd pass out) and finding I was so fatigued I couldn't deal with anything. We still haven't worked out what the cause of all the other problems are (when admitted after collapsing in a supermarket they said I suffered a Supraventricular Tachycardia attack and my blood pressure was up and down all over the place), and I've been all over the country to different specialists trying to make a diagnosis. It's been suggested it could be Autonomic Neuropathy but my diabetes consultant said it would be unusual to have that with no peripheral problems first if it was a result of the diabetes. Unfortunately despite my good control whilst on the pump, I got a cellulitis infection at the site of the needle, and from there it all went downhill- I had cellulitis 2-4 times a month for a year before eventually giving up and coming off the pump. As you can imagine, it was all of these problems that made me feel like there was no point trying.
I think the suggestions to try the DAFNE course are useful, I was diagnosed just when they were starting to tell type one's to eat what they want and adjust the insulin for it, however I was never taught to carb-count. I did see the dietician for quite a while but felt like it wasn't really enough input- going one week and having him say "there's x amount of carbs in x grams of potatoes, try and weigh everything before you eat it and write it down and I'll see you again in a couple of weeks", so even after 11 years I still couldn't make a rough guess as to what carbs would be in anything really. So maybe if the DAFNE course is a short but intensive course I might be able to stick with it long enough to learn something?
Just an added note- I don't know if anyone else has this problem, but I also find that when I'm struggling, I'll inject a little less insulin than I think I need (only by a couple of units, but it all adds up obviously) because I'm so scared of going low. I feel like if I'm aiming to keep my sugars at around 5, and I overdose a tiny bit, I could end up in a really bad situation because of a hypo, whereas if I'm aiming to keep around 9 and I accidentally overdose a tiny bit, I'll still be safe because I was only aiming for 9 in the first place. I realise it's stupid, but I've had some terrifying hypos in the time my hBA1c was 7 (including one where I woke feeling low, but couldn't move my limbs to do anything about it, and 2 seizures where someone walked in and found me), so it's hard to not worry so much, especially when I live alone!

Sorry for the long post! And thank you for the responses so far, I'm going to speak to my doctor about the DAFNE course ASAP.

Sarah
 
hi sarah

only just joined the site, this is the second post i have read that has made me feel like im not alone. i have never met anyone our sort of age with type 1 diabetes, and most of my friends either dont care much or just dont realy understand the whole diabetes thing. i have been in similar situations to yours, also felt so hopeless and alone like know one will ever understand, which made me feel like theres no point in trying. but as my diabetes controll has improved and other things in my life have got better, i am finding it easier to control (i think the stress of it all just made it seem impossible). but i still think i could be doing more to keep on track.

Good luck with everything!
tbh i do the same with what level to aim for, its the only way it works for me, but what is this course you are talking about?
chris
 
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