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Failing diabetic type 1

L

Lita23

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4
Hi all.

Im 21 and have diabetes for 16 years. Since i was about 13 I've been in control of ot myself. I've only ever done enough insulin to keep myself alive. i end up in hospital on average if 4 times a year with ketoacidosis. where i stay in for a few days in drips and have almost gone into a coma a few times. im very conscious about my weight and find if i do the amount of insulin i should do i balloon to a size 14. i do over eat quite abit, however i can't control myself. I've been to therapy and dietitions the lot. but nothing seems to help. i just don't seem to accept the fact that i am a diabetic. my hba1c is always at 14+ and i have kidney failure and constant swelling in my legs and ancles. the docs said i prob won't last another 20 years if i carry on the way i am.

has anyone else ever been this way? Im so scared of what might happen to me but just can't seem to control myself or my diabetes.

Please help me :-(
 
Hi Lita
Welcome to the forum, so sorry to hear you are feeling this way. I can identify with you. When I was young I went through periods of time where I just could not be bothered with my Diabetes, infact it took me a few years to take it seriously really...like you when complications set in.
I remember being diagnosed and just rushing to get out the hospital to get where I was rushing to next, I remember thinking I just don't have the time or inclination to want to deal with this...as my life at that time was 100 mile an hour...and Diabetes IS time consuming,it's a drag at times.

There were times when I was younger and not even testing ,just injecting, I did always do that when I was on mixtards, but I could not be bothered ordering test strips for quiet some time :oops: I hate to admit it, but I look back and I don't think it was denial...just did not have the time for it in my life at that time, so bad.

I did also lose a lot of weight at times ,obviously :shock: Eating whatever I wanted ,and I remember at times thinking this ain't bad really :oops: Again not good, but what I'm trying to say is it does happen Lita, so try not to be too hard on yourself...for some of us it just takes that little bit longer and we can't all be perfect, and we all handle things very differently.

Try to get the help from your Diabetic team, mine are fantastic now. They would never judge anyone for falling out of the loop and fully understand that young ,and older people with this disease all have periods of time in their life where for one reason or another they just need that bit of extra help.

I hope you find it Hun, stick around here, because there are some lovely helpful people on this site. I have got a lot of help here :D Good luck
 
Thank you so much. It does give me alot more hope by reading others opinions and how they deal with it day to day.

I don't test my sugars. I just normally see how i feel.... im not a bad judge of my body and can usually tell how im feeling.

Thanks for the advice, im pretty sure in going to stuck around on here. Have been glued to this site for about 3 days now :-)

Take care x
 
hi Lita

you need to start taking steps to turn things around, and believe me there are people on here that have reversed some pretty bad complications by taking more care of their Diabetes, diet and exercise, it can be done ,and it is never too late....so don't lose hope.
You really need to start testing your BG, that is the first practical step that will go a long way in taking back control. Test before ,and two hours after each meal, to see what your BG is doing over time.
Are your DSN's good ? ask them about the DAFNE course which is very good also and will help you take back control on a practical level.

Trying to control your weight this way will lead to complications, but if you find other coping strategies for you weight in the long run , you will find that when you have good control and if you are eating well and some exercise your weight will stabalise .

Go see a GP,maybe about seeing a dietician / counsellor again ,sometimes it is really about dropping on the right person to give you the help you need, don't give up trying to find it.

First of all though, one step at a time, get in touch with your DSN and get in a good testing regime.

I really hope you get in a better place with it all, but can fully understand what you are going through and how hard it is sometimes.

Yes, hang around :D
 
What is Dsn and Dafne??

I think my main problem with thru bg testing is that i never remember. how do u get around that as it really is difficult to fit into my day.
plus if i don't feel comfortable about where i am when it comes to injecting time i think to myself ill do it later. but then forget anyway.

its all so difficult and im quite a stubborn person and don't like change.

How did u come to accept the change and fitting all the injecting and testing into ur life?
 
DSN = diabetic [sic] specialist nurse
DAFNE = dose adjustment for normal eating - a proven if slightly elitist/arrogant* education program

* basic assumption is that we need to be supervised by an official DAFNE educator to benefit from the program.

Testing - I know that it can be difficult sometimes. You could try leaving your meter somewhere where you'll have to deal with it when you should test - e.g. I tend to place my kit next to the kettle to remind me to test and take my insulin when I get up in the morning.
Next, try to fit your tests into your schedule - I always test after my 10 o'clock lecture for example.

Finally, I think that you can have any two of health, money and convenience so you might consider getting a continous glucose monitor if you have the cash (£3000 per year) for that. Sadly, whilst the NHS pays for insulin pumps under certain conditions they will not pay for CGM.

As for not injecting - I wouldn't ever defer injections; as you have found out it's quite easy to forget and insulin is designed to be injected (immediately) before eating. I'd suggest not eating in that situation, or having a snack that is low in carbs to limit the damage.
 
Lita,

Goes without saying that the sooner you accept your diabetes the sooner you can begin to right the wrongs in your diabetes management. At 21 you have your whole life ahead of you and most things can be achievable but only if you take control now before further damage is done, we have all been through the phase of denial and hatred towards diabetes but it achieves nothing and only brings you ill-health.

Take any help or advice that comes your way and try and get enrolled on a educational course such as DAFNE, these are fantastic courses and will put you back on the road to good health.

Good luck! :)

Nigel
 
Hi Lita,

Bless ur cotton socks, it's never easy!
I can offer a little bit of hope, I hope. I was diagnosed at the age of 4 and am 44 now but was never really in control until my 30's. Like you I did just enough to keep myself alive and also ended up in hospital with DKA, even that didn't shock me into looking after myself at the age of 18. I was in that mind set of thinking it won't happen to me and this condition is not going to rule my life.
Stay on the forum, we can all help with advice and motivation if you need or want it.
Try to set yourself little goals, eg I will do one BG test today and I think once in the swing and you note your results down you might find it interesting....I used to test once or twice a day and thought I knew when I was high or low......how surprised was I that ! was totally wrong.
Maybe try doing a pre brekkie test or a pre lunch.....test before an injection, that's how I remembered!
I hope that you are looked after by a hospital and not a gp, if you are looked after, for your Diabetes, by your GP then ask to be referred to the hospital instead.
The DSN's should be able to help and I also agree that DAFNE might help you, but with that course you do have to commit to doing at least 4 tests a day along with multiple injections.
I wish you all the best and if you want to chat or moan then just send me a message
Dani
x
 
Hi all,

Thank you for all your advice. Since being on here reading and asking questions i now realise i am not suffering alone. It really brings it home that people can change their lives around.

I've made an appointment with my gp to speak about seeing a dietition, therapist and going on a diabetic learning corse. My doctor has also suggested i go on the insulin pump. Do u think this is the best way to go?

Im tired of being unwell all the time, having sleepless nights and having major mood swings. It is time i take control of my life.
I am also making myself a new bg record book (making it pretty) :-)

I will be seeing my doctor thus afternoon so will keep you all posted.

Thank you for ur kind words and helping me understand a little more.
Hope you are all keeping well yourselves.

Thank you x
 
I'm sorry but I have to disagree with your GP regarding insulin pump therapy.

An insulin pump has many advantages (variable basal rate and more precise bolus) but also disadvantages (steep learning curve, having to wear the pump all the time, etc). Unless there a specific reason (such as frequent hypos) I would suggest giving MDI with DAFNE (or some other education program) a serious try first - many can achieve good control without an insulin pump.

However, too be completely honest, I don't think that they should have offered you a pump - NICE guidelines require inadequate control DESPITE the patient's best efforts, and you have admitted to being noncompliant.
 
Hi Lita, you're definitely not alone! I think most diabetics can relate to how you're feeling right now. My teenage years were really hard. I just wanted to be "normal" like all my friends and really hated the fact that I had this disease. I was also preoccupied with my weight and, at the time, really thought that I could manage my weight or my diabetes, but not both.

I went through a phase of injecting only when I really had to. I'd hardly ever test my sugar levels. I lost a lot of weight, which I thought was great at the time! I ended up in hospital with DKA. Although it did encourage me to get my act together, my control still didn't improve as much as it should.

That was all ten years ago. I have much better control now (still not perfect) and I feel much better for it. I've also managed to find ways to keep both my weight and my diabetes in check. Most people know what insulin can encourage people to gain weight. I also find it pretty hard to lose weight safely and sensibly. It can be done, though. You just need to find asokution that suits you. For me, I stick to a low GI diet, limit my carbs (within reason) and have managed to lower my required insulin dose. I exercise 4-5 times a week and that has really helped - exercise classes such as body combat and spinning are a favourite!

Don't get my wrong, I still have days now where I absolutely hate being diabetic, but I am much happier accepting that it is part of my life. I've always turned down the pump, mainly for vanity reasons if I'm completely honest. I feel that having a pump attached to me is a constant reminder that I am diabetic. That's just me, though. Plenty of people on this forum who have had some real successes with the pump.

I talk to my diabetes specialist nurse and doctor about all these issues when I see them for check ups. Yes they are helpful, but I've found talking to friends and getting their support much more valuable. They don't know anywhere bear as much about diabetes, but they are the ones who are around me each an every day and can see when I'm falling off the wagon, so to speak.

I hope you get it sorted soon. I think you know as much as anybody else that you need to gain better control. Plenty of people have been where you are now. You can turn things around. It's not going to be an overnight thing, but you'll get there. Use the people around you for support. Talk to your diabetes team and ask them how to do this safely. Agree some goals with them e.g. Reduce HBA1C to x in 6 months. I'd you reach your target, treat yourself - go out somewhere nice or buy yourself something that you've been eyeing up in the shops for months (works for me!).

Anyway, I'll stop rambling. Good luck and get in touch if you need anything.

Take care,
Em
 
Lita23 said:
Hi all,

Thank you for all your advice. Since being on here reading and asking questions i now realise i am not suffering alone. It really brings it home that people can change their lives around.

I've made an appointment with my gp to speak about seeing a dietition, therapist and going on a diabetic learning corse. My doctor has also suggested i go on the insulin pump. Do u think this is the best way to go?

Im tired of being unwell all the time, having sleepless nights and having major mood swings. It is time i take control of my life.
I am also making myself a new bg record book (making it pretty) :-)

I will be seeing my doctor thus afternoon so will keep you all posted.

Thank you for ur kind words and helping me understand a little more.
Hope you are all keeping well yourselves.

Thank you x
Click to expand...


All sounds very positive LIta! :D

The insulin pump is a personal choice and only you can decide if you want to get one or not, as your gp has suggested this it would be advisable to discuss this with your diabetes care team who will say if it is suitable for your current circumstances.

Nigel
 
Hi Lita
So good to hear you a lot more positive, me>>> :D :D :D Fantastic you have made the decision to take control of things, I'm sure you will go from strength to strength.

Some lovely replies, I agree with Elc, it might not happen overnight but the small positive changes you can manage will set you in the right direction and you will feel so much better health wise it will encourage you on.

Great news on the testing diary.....I wish I'd have made mine pretty now too!

Good luck ,and stick around if we can help at all
 
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