Type 1 30 Years Having Serious Problems

[Auckland Canary]

Hi Everyone,

This is my first time posting on this board but I am desperately seeking advice. I have been Type 1 for over 30 years now. Generally throughout my life my control has been excellent. However in the last few years I have frequently lost my hypo warning signs. In the last 3 years I have had to be attended by paramedics 3 times (always when asleep) and last night I believe I almost died. I was having convulsions and my jaw was locked etc. Apparently I was unconscious for nearly an hour before being revived by paramedics.

The issue I am seeking assistance with is other people’s understanding of how long term Type 1 affects you psychologically. Obviously after these incidences I should be going straight to my healthcare team and doctors etc. However I generally find (and these are not isolated incidents) that I get patronised and told how to live my life and when and how I should be doing things. No one ever asks me how I am feeling about it or will consider my point of view.

I currently have tried to run my HBA1C’s at about 6-7% but have been told now that for me this is too low and I need to get them higher because of my hypo risk. However I am frightened that doing this will result in all of the unpleasant side effects of diabetes that, apart from some mild retinopathy, I have avoided. When I try and discuss this with people I just get told that I don’t need to worry. As I have maybe another 30 – 40 years of this how can I not be worried about this?

I currently live in New Zealand although I am British and will be returning to the UK to live in a few weeks. Here the law is that you lose your driving licence as soon as you have to have help with a hypo and I have already lost my licence for 2 3 month periods.

So I feel that if I am honest with people I end up getting punished and then am forced to attend a multitude of appointments with dieticians, endocrinologists, nurses etc all at inconvenient times meaning I have to take lots of time off work.

I always vowed that my diabetes would never beat me but to be honest I feel so alone and isolated now. I can’t carry on living this way as I may end up dying but I can’t go to people who are supposed to help me because I feel it turns into a box ticking exercise for them. And the simple fact is not one of them actually KNOWS what it is like, particularly for us long termers. I strongly feel sometimes that diabetic professionals make decisions of my healthcare based on the latest fashionable findings. However if I follow this and it turns out to be wrong in 20 years I am the one that will suffer for it medically.

I feel like I have had enough of it and have nowhere to turn.

I was just wondering if anyone else experiences like this where they have been diabetic for many years and has basically run out of hope for their future?

Sorry for the unhappy post but I am really not in a good place at the moment

 

[Trinity_32]

Hi,
I'm sorry you're feeling this way and I'm not sure what advice to give to be honest, all I can say is that I understand. I've had type 1 for 20 years and it has been a constant struggle, and it's only in the last few months I've started to get back some control after severe health problems (not related to diabetes). I'm afraid my diabetes has rather taken a back seat. Psychologically I think I find it very draining. There is fantastic support on this board and people who I know will be able to offer practical advice, I just wanted you to know that you're not alone.


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[czj]

Hi. I know how you feel. I have been T1 for 44 years, and am fed up with (some) Drs who have no understanding. Things can improve for you, so stick in there.

Some recent examples of Drs sticking to a script? I have proliferative retinopathy in one eye, and when I saw a young Dr two years ago, he said "now, try and keep your blood sugars in range". He looked really flustered when I said "You know, both my eyes have been diabetic for 42 years, don't you think you are missing something?"

Then I moved house and got a new GP. He started on the "Asprin bad, statin good" script, saying we were in it for the long term. No, I said, the long term was when I was diagnosed in 1969...

So they all fall back on a script then they have nothing to add. You do know best, but it does get wearing trying to make your own way through this maze. I am sorry to hear you are running out of hope. I haven't but neither would I like to live forever.

PS on a practical note I recently got my hypo warnings back earlier, through changing insulins, Lantus to Insulatard

I hope things get easier for you

 

[Nickers]

Hi there I'm sorry to hear about your problems with your hypos I know you can see about getting a dog possibly that myt help you to recognise you having a hypo before you do not sure where to go but I hear of people at my work who train them that they do allow them to people like yourself who have hypos without realising xx


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[Dillinger]

Hi,

Night time hypos are very unnerving especially severe ones like you have just had; it is completely understandable that you are feeling low and shell shocked.

However, getting back control is completely possible. Could you give us a bit more information? What insulin are you on, what are your insulin/carb ratios, what other medications do you take, what type of dietary regime are you on, what exercise do you do, and what do you think happened last night?

Night time hypos are either too much long acting, too much short acting with your evening meal or the result of some sort of carb counting or other mistake. As such with a bit of Sherlock Holmes type deduction you will be able to work out what has happened and how to correct it.

If you are generally hypo unaware it could be down to the type of insulin you are on; for instance animal insulin reportedly promotes better hypo awareness. But if you are running HbA1c between 6 and 7 that equates to average blood sugars of between 7 and 8.6 mmol/l - that is hardly hypo territory unless those HbA1c's are made up of lots of lows and lots of highs averaging out? Are your blood sugars generally stable - what sort of range do you get when testing?

Hypo awareness though is distinct from what is happening overnight; you should be able to find a method of getting the best shot at stable blood sugars whilst you sleep.

Best

Dillinger

 

[noblehead]

Never give up hope AC, you've done extremely well to reach the 30 year mark without any major complications and your loss of hypo awareness is something that can resolved hopefully.

Hypo's are a result of too much insulin or exercise that you haven't adjusted for, if you hypo quite frequently at night then you need to cut back on your basal insulin, to do this you need to reduce the dose gradually and carry out some early morning bg checks until such times that your pre-bed bg readings are within 1-2mmol of your morning readings.

The advice you been given about running bg levels higher than normal is the standard advice to restore hypo awareness and works in most cases, I'm sure you need to do this over several weeks but understand that your panicking about the harm it may do in the short term, if it's the eyes that you are most concerned about then speak with your Opthamologist first.

Those who run their bg too tight often see a demise in their hypo awareness and often lose it completely, however the same can be said for those who run their bg/hba1c higher but experience hypo's on a daily basis, once the frequency of hypo's are significantly reduced the chances of losing the awareness is greatly reduced.

I've not lost my awareness in 31 years but don't run my bg too tight, I try my best to keep out the 4's and keep my bg above 5 at all times, inevitably I do sometimes drop into the the high 4's preprandial but if I spot that I'm heading into the 4's 1-2 hours before eating then I'll have a 5-10g snack, by doing this I believe this in part keeps the hypo awareness intact.

As for your comments on the HCP's, well they cannot possible know what it's like to live with diabetes on a daily basis and I've never came across one that said they did, I agree there's a lot of box ticking now but this is something they have to do to ensure that they have carried out the right checks and asked you the right questions on how you are coping with diabetes both physically and mentally, at the end of day we are not forced to adhere their advice but I think a compromise is the best approach in managing and coping with diabetes, my own HCP's have been very good over the years although they are not by any means faultless.

Good luck and look forward to you returning to the UK and contributing more to the forum!

 

[Auckland Canary]

Thanks for all of your positive feedback. To add to some of the questions about my lifestyle.

I inject 12 units of Lantus twice daily as I was advised to split this a few years ago. I also use Novorapid as my bolus. One thing that I think may cause me problems is I sometimes try and micro manage my BSL’s to an extent that I sometimes end up injecting myself 6 or 7 times a day with small doses of Novorapid depending on my BSL’s. Last year I was offered a pump but turned it down. Part of the problem is that the more I lose control of my diabetes the more angry and defensive I become. When people try and help me I push back at them and refuse assistance and pretend that everything is OK. This was part of the original question I asked about the psychology of long term Type 1.

I basically feel that I have lost control and I have failed in this aspect of my life. I am actually desperate for help (hence coming on here) but I need to remain in control and not have HCP’s taking over and pushing me around. It has become a vicious circle. I know this is my fault but over the years I have seen so many different doctors who all tell you different things that I have become very suspicious of them all. I also have a psychological problem with being permanently hooked up to a pump. I know many people rave about them but I despise the thought of being reliant on a machine to keep me alive. I know it’s ridiculous but I struggle with it. It’s my problem and I need to deal with it.

Although my HBA1C’s have generally been superb throughout my life I have noticed in recent years that my levels, although are not what I would call out of control, have become erratic. I can do exactly the same things for 2 days running and end up with 2 totally different BSL’s. This is what I don’t understand.

I am a physically very active person who is not overweight and cycle on average 35k’s a day to get to work and back. One example is last week I woke with BSL of 6.7 ate breakfast (2 slices of toast with Vegemite), injected normal amount of Novorapid (12 units when I cycle) and cycled 17.5k’s to work. I tested my blood when I arrived at work about an hour later and my blood was 21.1! I do that another day and I’ll have a hypo.

It’s this irregularity that I am finding hard. I generally eat the same things every day when I am at work. Toast or Weetbix for breakfast, 3 pieces of fruit, a carrot, some celery, a sandwich and a muesli bar during the day and I will generally test my blood about 6 times a day. The evenings vary but I always have some carbs with rice, pasta, potatoes etc. I know this seems like very few carbs for someone who is very active but I still get high readings so I tend to manage my levels with insulin variances rather than changing my food intake. My highest levels often come mid morning and mid evening and afternoons are generally lower.

What happened the other night with my severe hypo was probably a result of not enough carbs. However I was 7.7 when I went to bed at about 9.30pm. Sometimes I will wake up the next morning and be 18 and sometimes I will be 3. This is what is making things difficult as I have always been so stable.

My hypo awareness has been faltering for many years and I am sure that it is due to the insulin. I ran my BSL’s high a few years ago when I first lost my licence and they came back but as soon as I brought the BSL’s down to more normal levels they disappeared again. I sometimes have warning signs but worryingly I often just slip into them and become confused and have to be told by other people I am having one. Interestingly no HCP has recommended I actually change insulin, they all just want me to go on a pump and when I refused they never discussed any further action.

 

[Jubblyjo1601]

Sorry you are feeling so down :-( I am not the best controlled diabetic so I won't try and give you advice but I am sending you a big hug and hope that you will be feeling happier soon and you will be all sorted! x


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[Lexicon]

Dear AC,
My heart goes out to you, but unfortunately as a 46yr old diagnosed with T1 just 2 months ago I'm afraid I have no practical advice to offer. However I do want to give you my thanks, reading such an honest and detailed report of your struggle and what you are facing has helped me to look at my own situation and future head-on and has given me the heads up on what to expect.

 

[Engineer88]

AC have you been tested for Coeliac disease?

Ive been diabetic for 23 and a bit years (from 2) and have always been a 'brittle' diabetic. I can totally empathise with everything your going through i get so angry and defensive also. Its only last month when i have changed hospital (again) when i have met a Dr that seems really great and nearly had me in tears. Stick in there. If you need to talk a bit give us a shout.

Also have you looked into continuous monitoring systems? sounds like you could do with one.

Well done so far and Goodluck! :mrgreen:

 

[weeezer]

Totally get your lack of trust with the hcp's...sometimes we are nimbers not people. i have the eternal argument with them of wanting to be lower all the time to avoid complications, but I simply can't do it without hypos becoming part of the landscape. And then awareness disappears. Which is totally unacceptable to them (for safety's sake obvs) but I have always accepted that they are part of the deal when trying to live 'In range'. I'm not so sure I am the one who's right tho :/

I had a great conversation with my pump consultant earlier this year, she was really happy with my numbers and I was shocked...there were double figures in there (hba1c was 6. something) and the averages were higher that I was happy with. She said sure, I could go a step further and micro manage hour on hour, but maybe should give the kids & husband back. I get her point, it's really hard to achieve normal levels & have a life, we have diabetes, a fact I always like to ignore!!! I want to be normal like everyone else.

by the way, it's far easier to tweak and adjust as you go on pump...it is actually quite liberating not restricting. You can eat whenever, and whatever. I feel the most 'normal' I have ever felt, I can avoid food all day if I like! Or eat as erratically as it suits me. miss meals. eat low carb, high carb, whatever! You can temporarily lower or higher basal rates in accordance to what you're doing (bike rides or lying around in bed!) There's no 'feeding' of background insulin, it's so great to match your basal exactly, it's the best thing I've done to improve my diabetic life. My mum is also t1 and has just got a pump, she's only had it a few days and is using half the amount of insulin she was using on mdi. Will be very interested to see how her levels go, she has been very erratic over the last few years and cant seem to lower a1c. So if it is the insulin having bad effects, the pump would actually help! No need for background (it only runs on fast acting) and you'd need less than you currently use.

I know this doesn't exactly address your post, but I feel you are doing yourself a disservice by not considering a pump considering all your concerns! It would enable you to be free-er and it also would be a great way to tackle nightie hypos (well, anytime hypos!).

Btw, I have serious psychological probs too. I had never been 'bothered' about having diabetes...until recently, when it started to freak me out. I hate it all of a sudden, realised its never going away. Think I need some therapy. But the pump is very reassuring to me in this respect, I can keep a better handle on bg levels, therefore reduce my fear factor.

Keep on sharing, it's what we're here for!




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[DunePlodder]

Hi,
Sorry to hear about your situation.
I agree with you about Doctors. There are good ones out there, but in my experience, they don't stay long at smaller hospitals. Unfortunately the poorer, "tick box" ones do.

Just a thought, but the differing results on otherwise identical days may be injection site problems?
I can be going along reasonably well with good, fairly logical results, when for no apparent reason everything goes haywire. If it's just a one day "blip" fine, that's diabetic life, but sometimes it continues. This leaves me frustrated & angry (which probably doesn't help at all).
When I've calmed down, I do a rethink & usually conclude that it's probably about differing absorption rates. I try to rotate my sites but inevitably some are used more than others. I work outside a lot & getting at my arms in winter is a lot of hassle when wearing 4 or 5 layers. Dropping my trousers isn't always appropriate as you can imagine. I then make a conscious effort to "rest" some sites.

These days I record where I inject as well as everything else. It can be useful when trying to sort things out. I reckon that in my 18 years or so since diagnosis I've done around 30,000 injections - you must have done many more, so it's no great surprise if we have injection site problems!
As to the psychological effects, for me there is a direct correlation with BG results. A bad reading at breakfast can set the tone for the day.

For a light hearted view of the erratic nature of diabetes you might like to read Mike's latest blog at http://www.everydayupsanddowns.co.uk/.

I guess the stresses of your move back to the UK won't help either, but I hope you get things back in balance soon.

Good luck.
Robert

 

[Auckland Canary]

I'd just like to say a massive thanks to everyone here for your support. I am going through one of the most challenging times in my life at the moment with organizing a move half way around the world and having control issues at the same time.

But you have all been fantastic with your support and advice. I think when I get back to the UK I am going to look at getting a pump if I can. Ii think this may be useful for my situation. I also have to to try and learn to work and trust HCPs and realize that my diabetic control is not a reflection on me.

I have lived with this for 30 years and in reality done bloody well. I have travelled, lived in foreign countries, scuba dived etc and all the time livedvwithbType 1.

I do need to sort some things out but I don't have to do it alone. So thanks again to everyone.

 

[emmie]

Hi there,

I've been exactly where you are now. I frequently had hypos during the night where my mum would have to call an ambulance because she couldn't bring me round herself. We've found that I metabolise insulin slowly so would catch up on me later.

I also felt the same as you about the pump. I was single at the time and felt I would be seen the wrong way by men and in a way less attractive with a pump but luckily I have been proven wrong on that. But what I found out with constant injections over many years your skin does harden so insulin gets trapped and then disperses later hence hypos. This is what tipped me onto the pump as I was really struggling to eat without hypers.

I also no longer have hypo awareness and lost mine after a infection and a severe hypo during the night, where mum had to call for ambulance. It was only when I was in hospital I found out I'd lost my awareness. I did try all sorts to gain it back but have been unsuccessful. I'm one of the very privileged people to have a hypo alert dog and he has changed my world. Even though I still blood test 15 odd times a day I don't have the anxiety of worrying what my levels are. Toby has also learnt by himself to alert to hypers too even though I do still get hyper symptoms its reassuring if I was to loss that too he would pick them up and alert. I strongly recommend these dogs to anyone with T1 and lack of awareness because it does effect your psychologically not only on the long term but on a day to day basis

Sorry for the long message but as I read yours it was like listening to myself lol

Take care and it will get better with your strong mentality to keep fighting

X


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[Riesenburg]

Hi,

I can fully relate, diabetic for 32+yrs now and have very similar experiences.

The issue I am seeking assistance with is other people’s understanding of how long term Type 1 affects you psychologically

That is a key problem, there is very little diabetes-psychology information out there, other than the depression aspect of having to manage it. I'm currently researching into this academically and the scope of information is downright depressing!

For lack of warnings all I do is check often and I mean very often, I drive my GP up the wall when she has to prescribe my test strips every month I too check them 10-15 times a day (depending on whether I go to tthe gym or not). To avoid night time hypos I usually let them be in their 8-10s before going to sleep and leave the basal to worry about keeping those in check seeems to do the trick for me. All you can do with this is experiment and test it's the way to go in my opinion...

I feel like I have had enough of it and have nowhere to turn.

I was just wondering if anyone else experiences like this where they have been diabetic for many years and has basically run out of hope for their future?

Oh goodness the number of times I go through those emotions is beyond description. All you can do is focus on the fact that you ARE doing well and that's the important thing.

These forums are quite helpful too don't hesitate to just chat to us all sometimes sharing the problem is all we need to do to make ourselves feel a bit better and less isolated. I don't understand why you would run out of hope for the future, yes things are more difficult and yes people without diabetes will never truely understand it, but that doesn't mean there is no hope. We just push forward! Keep going and keep at it, with the advances in research things are actually looking up...

Frankie

 

[phoenix]

That is a key problem, there is very little diabetes-psychology information out there, other than the depression aspect of having to manage it. I'm currently researching into this academically and the scope of information is downright depressing!

You may very well have already contacted/used their resources but in case you haven't heres a link to Polonsky's Behavioral Diabetes Institute
http://www.behavioraldiabetesinstitute. ... itute.html

 

[Mr Happy]

I would suggest that micro managing may partly be the problem. Even fast acting insulin will be having an effect a couple of hours later, by injecting again you will be getting a new 'hit' alongside. Effectively you will never have a smooth level. Also, with different sites of injection, different exercise and stresses throughout the day, each shot may impact you differently. I am not being critical by saying this, the desire to want tight control is commendable. All I would say is that its harder for you to map the trends in doing it this way and it may cause more fluctuations.

As for feeling down, all I can offer you is hope. People do not understand that it can be a daily struggle and you're only a couple of units or a bit of food away from discomfort. However, don't ever think it is beating you! Every injection, bit of food you enjoy, day in the sunshine etc is a day of sticking two fingers up at your pancreas!

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[kjw123]

I can also sympathise with your situation as i have been type 1 for 22 years.....you know your body and how you feel better than they do, also many of the Doctors and nurses have completed a short course (a couple of weeks in some cases) learning how to treat diabetes problems, you've been learning about Diabetes for 30 years so who knows more? you or the nurses. They understand the text book theory but in my experience the text book theory is not always helpful we are individuals and need to be treated as such because we are not text book diabetics.

God knows why you would want to return to the UK things are no better here.

Having read what you have put so far I would say you are taking too much insulin and you need to look at that again as you do a fair amount of excersise anyway.

Take care.

 

[Stefano]

Hi AC, sorry to hear what you're experiencing. I want to share my experience. I am now 33 years diabetic...almost all my life
I always thought diabetes wouldn't have made my life difficult but it actually did about 4 years ago.
I started having lots of lows and highs but mostly unexplained lows and mostly unpredictable. I have always been scared of night lows mostly because in the early 80s, as a child, I fainted so often while sleeping. So this situation made night time become the worst time of the day: never feeling safe.
The hospital, 2 years ago, told me clearly that I was keeping my blood sugar too low and hence I was under a severe risk of having heart attack or brain damage due to risk of severe lows while sleeping.
At the same time I wanted to keep my bg as controlled as possible to protect my eyes ( I developed preproliferative retinopathy ) but my hypo awareness was reducing drastically.
The hospital doctor (I live in London) clearly told me that lantus or levemir had an unpredictable effect on my body, different every day. I could have done the same thing everyday (eating same amount of carbs and injecting same amount of insulin) and every day I would have had different bg readings.
Doctors clearly told me they didn't know how to help me and suggested me to try an insulin pump. For them it was the only option. I didn't like the idea at the beginning, but I realised that I was gradually stopping living a normal life: stopping going out with friends for fear of hypos and so on.
Last August as my quality of life was really awful I decided to try a pump.
It's been the best choice I ever did. Only regret I didn't try it before.
My hypos have drastically reduced.
The way fast acting insulin works is so predictable and I can sleep without any fear or bad surprise.
Apart from this I wanted to try also the CGM in order to be warned by the machine every time my bg goes to low. But as my hypos have almost disappeared the NHS doesn't pay for this part anymore, so if I want this I have to pay it myself. My eyes, in the meantime have got better but mostly I feel I have things in control again after years.
Get in touch if you have any question!



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[Robinredbreast]

Hi there :wave:

I'm sorry to hear of your awful, awful problems regarding diabetes and hypo's.

To try and get hypo unawareness back the BS needs to run a little higher, I had to do this last year as I was sitting in front of the hospital DSN and having a 2. 7 hypo and I was totally unaware. It has helped, sometimes I feel awful and when I have tested it was 3.9 so a fraction under.

I do agree with you about Diabetes specialists, ONE SIZE DOES FIT ALL and what will work for one patient will not work for the next. They ought to get that tattooed on their brain, it's about time they realised. Type 1's differ so much, with weight, gender, medical needs, lifestyle, work and family and Type 1 and can be debilitating at times.

I have had Type 1 for 24 years and about 18 months ago experienced eye problems, recently gut problems and bone problems and now an appointment with a Neurology clinic, but couldn't get an appointment until the 3 week in August

Good luck and I hope things start to get better for you soon, take care

RRB