Why cant I pull myself together and accept my diabetes?

diva19871987

Well-Known Member
Messages
74
I have been type 1 since I was 12 and am now 25. Through my teenage years I rebelled and I dont even want to think about the damage I have done to my self. I used to go days with no insulin, I remember not even getting testing strips because I hardly ever tested. My sugar would be over 30 for days, I drank alcohol excessively all through up to around the age of 22 not thinking about the effect of blood sugars and complications. I have smoked since I was 13, I have always gone through life thinking if everybody else can do it why cant I, the more Im told not to do something the more i'll do it. Then my life changed I got pregnant and became obsessed with blood sugars being low, often too low, paramedics were called loads and whilst I was happy they werent high they were regularly too low which I believed would make sure my twins where not effected in anyway. Fast forward 2 years I was diagnosed with background retinopathy, I never in a million years thought anything would happen to me when I was a teenager rebelling against this desiese but unfortunately it did. I have very bad depression which I am anti depressants for. I find it so very hard to even think of a reason to get up in a morning. I recently lost my job and with the extra hours of sitting around doing nothing often makes my depression worse as I spend more time thinking. The past few months I have been having pain in my feet which I am going to the hospital for next week and I am terrefied its going to be bad news and that I may lose my feet. All my friends and family have gone places in life and I suppose my biggest achievment in life was having two healthy children. I have always believed I cant to anything in life with type 1 and I suppose it has restricted my life. I sometimes read forums on this site and have seen many people do not let diabetes affect there lives and live life to the full, I desperately want to lead a happy and fulfilled life for my partner and children but at the moment I cant see this ever happening for me. The more I try the harder it seems to be at the moment and sometimes I feel whats the point and can hide myself away from the world for days. I worry every waking minute about complications and am forever beating myself up about not looking after it in the past and I obviously know I have only myself to blame If I did go blind or had any other serious complication. I would like to hear other diabetics stories of how they have coped since diagnosis? How does it affect there life and has it resricted them in anyway, I know people will think, "pull yourself together", but would like to know other peoples experiences, especially if they go the desese throught there teenage years. What were HBA1C as a child? Thank you
 

robert72

Well-Known Member
Messages
2,878
Type of diabetes
Type 1
Treatment type
Insulin
I used to see a consultant at the Whittington, London who was a Professor of Diabetes (sadly now retired). He used to tell me that the onset of complications was very often reversible with tight control. Dr Bernstein also mentions this in his book if I recall correctly. So it's not too late to try and get things under control.
 

diva19871987

Well-Known Member
Messages
74
Hi, Thank you for your reply, I often search the internet for hours on end trying to find out if anything can cause mild complications to stop progression, I am taking lots of different vitamins for my retinopathy, B vit, E vit, grape seed extract, to be honest I take round 20 tablets a day all at the recommened dose. I have foud bits and bobs on the internet about vitamins to reverse retinpopathy and I have seen on some that it is infact reversible, then when I ask my doctor she says only tight control will have an effect? Slighty confusing but I understand that a doctor can tell me for certain whether it will help. I have been using bentofaimine which is really expensive and I can only buy from the US. I am clutching at straws but will pay or do anything for a glimmer of hope that nothing serious happens to me. Robert72, I see youve had diabetes since 1972, I hope you dont mind but would like to know a bit more about someone who has had it for a while. What were your HBA1C like as far as you can remember? Have you had any complications to date? Do blood sugars flucuate? What steps do you take to avoid complications and if there is something specific you did to help with your diabetes what was it? Was your control ever poor? Have you ever smoked or drank alcohol since you were diagnosed? Sorry dont feel you need to answer them all just want to get a picture of how it affects somebody who has had it for many years. :wink:
 

robert72

Well-Known Member
Messages
2,878
Type of diabetes
Type 1
Treatment type
Insulin
Hi Diva19871987

I got diabetes at age 14. I don't think I ever controlled it very well - there were no BG meters in those days… we had to test our pee with test tubes and fizzing tablets that changed colour. Mine was almost always 3+ (the highest).

So, being a teenager, I never really bothered, thinking old age was very far away and that I was probably immortal. So I mostly ran high BGs. Oh, and I smoked 40 a day from the age of about 15-16.

It wasn't until I was told in 1997 that I had proliferative retinopathy that I really stopped and thought I ought to try and sort myself out. Anyway I had about 5-6 laser sessions (over 1000 burns apparently) the last session being in 1998 and it has been stable since then, but obviously my peripheral vision is now reduced.

But even that didn't stop me smoking and I was still not looking after by BGs well, but I did at least make an effort to lower my HbA1c which had been around 13. Next I was noticing that my eyes were getting a bit blurred - I was developing diabetic cataracts but they developed slowly so I never really noticed how bad they were getting.

The next milestone I think was in 2007 - I decided that I wanted to give up smoking, so booked a session with a hypnotherapist. I haven't had a single puff since. Around this time I also managed to get my HbA1c down into the 7s where it has pretty much remained for 5 years (still room for improvement).

Other complications that have developed are dry-eyes (ouch) and a slight loss of sensation around my toes (both due to nerve damage) and probably the most serious complication I have is narrowing of the arteries.

I have also developed eczema and coeliac disease - don't think those are complications but they go with the deficient immune system. I never had any alcohol problems. I suffer from depression from time to time. I think that's everything to date. The coeliac disease caused me to become anaemic and get osteoporosis but I'm taking iron and calcium tablets to counter those.

So over this last year I have been really trying to stop my see-saw blood sugars and it's starting to pay off. I have suffered a lot from high BGs that wouldn't respond to insulin but I have halved my carb intake over the last year and it's improving - I also changed from Humalog to NovoRapid which seems to suit me better.

I can't reverse the retinopathy now because it's been lasered away, but my feet are feeling a bit better and I can walk further before my legs start burning from restricted blood supply. So I'm optimistic that I'm finally turning things around. Just wish I hadn't waited so long ;)
 

Pneu

Well-Known Member
Messages
689
Diva... First of all you need to start looking forwards and not backwards... none of us can change the stupid things that we done when we were younger... if I could talk to 17 - 22 year old me he would get the talking to of his life! but I can't... looking back does nothing to help you all it does is depress.. as you mull over the 'what if'

The news is not all bleak however and although the damage may be done that doesn't mean that it can't be undone or at-least not made any worse. There are plenty of people with experience on here of having complications that have at worse stopped getting worse and at best improved when they have achieved good control.. If you can get yourself good continues control then you give your body a fighting chance of doing something about the damage.

I would suggest that you put together a plan of actions... start by making a list of long term aims / goals that you want to achieve... these may be diabetes related or they may just be things that will improve your life (diabetes is linked to lots of things in your life and the stresses and strains of life will effect your control)... Then start to make small changes to your life to achieve these... I set out nearly 4 years ago with 4 goals..

1. Maintain HbA1c below 6%
2. Stop Smoking
3. Reduce Stress / Anxiety
4. Lose Weight - 25KG

Now I haven;t yet achieved them all... 3 / 4 are still being worked on but I will continue to adjust and make adjustments and I am making progress..

Making goals / aims gives you a purpose in the long run.. it also means you can make targets in the short-term... My partner and my 14 month old are my inspiration not to slip.. Find your own inspiration and it can be done..
 

claymic

Well-Known Member
Messages
503
Type of diabetes
Treatment type
Insulin
It is very difficult to accept and deal with it. I am a T2 so cannot imagine how difficult it is to have to deal with diabetes when one is growing up.
I have had bouts of depression before. All i say Diva is that it is a constant battle. think of those two little kids who depend entirely on their mother. Make that your incentive...that you want to be there for them and that they need a healthy mother!!

Start by baby steps....day by day...looking too far ahead can be overwhelming.

I wish you best of luck!!!!! do not give up...there is sooo much you can life for!!!!!
 

SAH154

Well-Known Member
Messages
74
I smoked for 25 years and have now given up for 7 so I smoked 13 years of my diabetes and my eye consultant who lasered me said that smoking speeds up the process and makes it worse not sure how true this is but I did stop - it wasn't easy initially but worth it in the long run

As said you can't change the past but you must consider diabetic complications such as your eyes I had several eye bleeds in both eyes and this is really horrid not had one since 2009 so I'd really try to focus on the future
 

diva19871987

Well-Known Member
Messages
74
Hi, Thank you all for your replys. :D

Robert72 This is the first time Ive ever felt grateful about getting this desiese in the day and age of blood testers. Never even thought about what people used to do before they had them and I hate to think what I would be like now if I didnt have them. God knows what diabetics did years ago when they was pregnant cos it was bad enough when I was able to test so frequently! I suppose I should be grateful we get the help we do nowadays. :?

My dad has said to me ever since I was diagnosed, "Look after yourself the best you can cos oneday in your lifetime there will be a cure!". I only hope that is true and one day I can say "screw you diabetes!".

Oh how i wish!! :(
 

Kylie_Baker

Member
Messages
23
Dislikes
impolite people, tv, cheap icecream...
Dear Diva,

I can't imagine what it was like to grow up as a diabetic. All the changes that we all go through are difficult enough let alone that! I was diagnosed only last year in November. And to be honest, I think I am in a slight state of denial. Had I been given this news 18 years ago then I am sure that I would have reacted as you say you did.

What claymic and Pneu say about your children is so very true. My husband and I have a very busy 16 month old boy both mean the world to me, I want the share my life with them for as long as possible. I'm scared that our son will develop T1 and the only way I've really got my head around it was to give myself a matter of fact talking to-to take this seriously. It's up to me to set him a good example should this happen or not. Equally, it is up to me to take care of myself so that I am the mother that I hope to be. I do think that if it wasn't for him, then perhaps-just maybe, I wouldn't be as determined as I am.

bestest of luck Diva

kylie x

Your a Mumma to twins! You've got your hands full, you need to give yourself a big pat on the back. That is such an achievement (I've got twin brothers so know what it's like!). From the little experience I have, it does seem that there is no rest with being Diabetic, it's constant. Hard to concentrate on with little uns around. Hard to give 'IT' any attention. Hard to put yourself first. Hard hard hard!!! Is it worth speaking to your GP or DSN about this more directly? For what it is worth, they could put you in to contact with someone to help you through this.
 

shop

Well-Known Member
Messages
665
First of all Congratulations on having two healthy children. Being pregnant with, giving birth to and caring for twins is a massive feat in itself without having diabetes. Don't be so hard on yourself. I was diagnosed T1 as an adult and have been in denial and found it difficult so I can't imajine what a teenager must have had to deal with. I agree that making goals and attacking them 1 at a time is a positive step forward. Wish you all the luck in the world...xxx
 

MrsBinns

Member
Messages
7
I, like you, rebelled so much in my teenage years and i still do from time to time. Im 28 and was diagnosed when i was 5 years old. I was good until i left home as i had my mum to nag me but then when i left things were bad for about 5 years. Blood sugars always high, never did tests, just did a random amount of insulin when i actually remembered!
Started to behave when i got pregnant in 2006. Got it fairly well controlled and back to a normal level. After i had my daughter i got back into my old ways again and again stayed like it for years. This was until 2009 when i had a miscarriage and knew in my heart that my high blood sugars were the cause, or if werent the caurse, they certainly didnt help! That made me see sense. I sorted myself out, learnt about carb counting etc and was really good. Just over a year later i was pregnant again and again still being good all through my pregnancy until my 2nd daughter was born sept 2011. Although whilst pregnant this time i foiund out i had background retinopathy too which scared me. From then on it has gone down hill again. Constant highs, not checking BS, forgetting insulin etc. Ive had ketones so many times and at dangerous levels. Today i have been to the clinic for the first time since sept and they were understanding and gave me the kick up the bum i need. So from today, life begins again. I want to enjoy my life with my family not slowly kill myself which really i am doing by not looking after myself.

so mine is a very similar story xx
 

diva19871987

Well-Known Member
Messages
74
Hi, Thank you so much for your replies and sorry for not responding earlier. I tend to dwell and only see the negatives in life and I now no I should look to the future and not let this win. I never actually thought having healthy children in itself was an achievment and again I only saw the negatives with my diabetes and I beat myself up if sugars stray too high. I thik it will take a very long time to get my confidence back after my complication scares ive had recentlybecause I mainly focus on them getting worse which makes me even more derpressed. I am constantly worrying about how ive treated my diabetes and the complications i might get in the future beause of it. I feel down a lot of the time because I feel like i am fighting a loosing battle and the harder i try the worse my control is.. :evil: Maybe one day soon I will accept and be able to move on and achieve things in my life and not feel I cant do normal things what non diabetics do. Hopefully!
 

shop

Well-Known Member
Messages
665
We all beat ourselves up if we get high readings the key is to laern from it shake yourself off and move on. Give yourself a break and give yourself a pat on the back now and again. Guilt is a damaging emotion and we all feel guilty about what we should have done! i can understand you worrying about complications however if you imporove a bit at a time i am sure it will help. Out of interest have you learnt how to carb count. I am doing the BDEC course online, takes some practice but I feel so much more confident and in control...............It may help...........Hope things get better for you...xxx Incidentaly have you spoken to your GP about feeling down?
:)
 

jopar

Well-Known Member
Messages
2,222
Diva

You asked 'how do I accept being diabetic'?

You empower yourself to take ownership of it... Then acceptance follows naturally...

Fair play easier said than done, but you can do it you just need help to take your first steps to empowerment...

Some help to put some perspective on things, 99.9% of diabetics will suffer some background retinopathy but less than 5% go onto have severe impairment of vision...

Nueropathy can be reversed if caught before permanent is done, if permanent damaged is done further damaged can be averted and symptoms reduced... It doesn't mean that you will go onto lose your feet at all, means that you've got to get into a routine of checking your feet every day, to ensure that you've got no cuts, scratches or pressure being put on your feet that might cause problems that could lead to loses...

So these two problems hopefully not as scary or definite as you first thought...

So how can you go about pulling your self together as you put it... One step at a time and little steps if necessary, don't look backwards nor too far into the future..

I suggest that you contact your DSN and request an appointment ASAP, tell her how you feel, how daunting and dam right scary it all is for you... Ask for counselling as just taking anti-D's isn't going to help much if you not talking and working through your problems... Ask to be put on a Carb Counting course and also ask to be seen more frequently than you already are both your DSN and your consultant..

Establishing a good testing routine so that it becomes as natural as picking up your house keys when you go out, brushing your teeth is a pretty much a must... If you feel that you just can't go the whole hog, and start testing the whole lot straight away then build up slowly, say a week or two of ensuring that you take a BG every morning the add another meal on and 2 hours after... A suggestion here if you have got a blood glucose meter than you can add your insulin amount, or carbs eaten on (eletronic log book) I would ask your DSN for one.. Does make keeping a injection/food diary and exercise diary a lot easier..

I would take a look at the BDEC online course that shop mentioned to start getting your head around carb counting, also invest in a book called 'Using Insulin' by John Walsh which gives all the information you need for MDI regime, such as how exercise effects, how to work out how long your insulin is lasing in your body, how to work out your correction factors etc. As you need this to really start to take control of your diabetes..

As you slowly start to empower yourself with building routines with little goals, the more natural everything becomes and your confidence levels will build then at some point you realised that you've actually have excepted your diabetes...

As the can't do what non-diabetics can, you can just got to learn how to control your diabetes so you can...
 

Tracey167

Well-Known Member
Messages
309
Type of diabetes
Type 1
Treatment type
Insulin
Hi Diva

I was diagnosed type 1 when i was 13 and to be honest did'nt have a clue what diabetes was at that age just thought i could'nt eat sweets. I also refused to to take it on board how important the disease was and wanted to do the same as my friends drink, smoke and party. I then fell pregnant in 1996 with my son and my 1st husband left me when i was 5 months pregnant for another woman. I got over that and had my son and carried on. Then in 2000 i met my husband now and fell pregnant with my daughter and he made me see how important it was to take care of my diabetes and has stood by me through good and bad times. Unfortunatly i have now lost all awareness of my hypos so my husband had to become my carer. But for the past 28 years even through the times i tried to ignore my diabetes i've been really lucky, i think now as i'm getting older things are changing i have now been told i have developed reinpathy and have to attend the eye hospital for check ups. But the way i look at things you have to take each day as it comes and take the rough with the smooth otherwise it will drive you insane. I always say to myself there are people out there worse than me.

tracey167
 

shop

Well-Known Member
Messages
665
Hi,

Jopar I love the way you have put that. Ownership which is what I am starting to take, to me is the key. I dont expect it to be a doddle but it is 100 times better than previously. ( not carb counting ). Tracey167 You seem to have been through the mill too but lovely to hear about your healthy pregnancies. You are so right about those less fortunate. I lost my mum when I was 7. Grew up with my grandmother. If I ever feel down I will always see someone less fortunate and I say its my mum up there giving me a kick up the bum. It gives me a sharp shrift so to speak............I also know people with T1 kids, I am so glad its me and not my son........ :)