28 Years of Type 1 Diabetes & Completely Fed Up

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NTIL

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Type 1
Hi all,
I was diagnosed with type 1 diabetes in summer 1981, when I was 18 months old. I am now 29 years old and completely fed up of this monotonous condition. I am fed up of doctors who haven't spent a day with my diabetes thinking they know how to treat me ("No doctor, I'm afraid my diabetes doesn't work that way"), I am fed up of the mountains of injections and blood tests, continuous appointments (I feel like I spend half of my life in the hospital or GP's - giving blood samples for check-ups, going to check-ups, podiatry appointments, eye appointments, flu jabs, GP appointments for every minor cold etc. etc. etc.)! I'm fed up of being the only person at all these appointments who is less than 50 years old!

I told my consultant at my last check-up how I felt, only to be told that it wasn't compulsory to have the flu jab (well, that really reduces the burden!). He has also suggested that it might be worthwhile seeing the psychologist attached to the unit but, as it turns out, the position is not currently filled so I'm just on a waiting list for when a new psychologist arrives!

I also binge eat - anything that has a high sugar content seems to be my preference - which I think I am doing as a rebellion, a kind of self-sabotaging technique. Not so easy to stop, though.

Having also had my fair share of hypo's during my childhood, which have left me with a lot of unhappy/embarrassing memories, I find that I am spending more of my time lately thinking about death. I am terrified that I will die early (it only takes one hypo) or, worse, will be left disabled as a result of complications. I feel like a ticking time-bomb, sure that it's only a matter of time before my first complication arrives at my door. The thought of spending the second half of my life in some decrepid state is just terrible.

Please can someone tell me how I get through this and find a better way to work with my diabetes?

Thanks.
 
Hi NTIL, welcome to the forum🙂 Very sorry to hear of the position you find yourself in. I've only been diagnosed 17 months, so haven't had to endure this anywhere near as long as you. One thing that a lot of people find very useful, myself included, is face to face contact with other people with diabetes - preferably around your own age. Being amongst people who 'get it' can make a huge difference to how you feel about it - it's such a release to share common feelings and experiences. Have you been on a diabetes education course - DAFNE or something similar? If not, I'd definitely recommend it. Or maybe there is a local Diabetes UK support group in your area?

I think by coming here you accept that you need to get to grips with things and stop letting it dominate your life - if we can help in any way, just let us know.
 
Hi I'm Karen, type 1 for 32 years. I too have had periods of despair and know all too well what it's like to be the youngest at some of the clinics you mention. Like you I have looked at people and been afraid, thinking "will that be me one day?" Tomorrow I have to go to the eye clinic as I have maculopathy in one eye and I'm really fed up that I have to go. I'm sick of the time I spend in such places and although I know it's all for a reason it's still not fair!

My way of dealing with it is by having one or two very trusted friends whom I can bare my soul to, cry with, laugh with etc. I also have a very sarcastic sense of humour and pull life experiences apart and laugh at them - it brings them down to size! But my heart is often heavy with the burden of the daily grind of diabetes and I recognise much of what you say.

Try to stop the binge eating, that's not going to help your mood as you will feel poorly and miserable. Try to do something else instead - what do you enjoy? Is there a way of doing something nice for yourself when tempted to binge eat?

Sending you hugs and hoping this awful time for you soon passes.

karen.xx
 
Hi Northerner!
Thanks very much for your welcome and reply!

I haven't been on any courses for my diabetes in all my 28 years!! They didn't actually exist when I was younger!! :D

The issue I have with most of the courses, for example the DAFNE, is that I already know the content... That method was "a la mode" in the mid 80s(!) and hence something I've already learned.

I do think you're right that it would be a wise step to actually meet some more diabetics... The only one I currently know is my younger sister and she refuses to talk diabetes with me at all (some kind of sibling rivalry issue there on her part!). I'm not really sure what is available in my area or even how to find out about what's on. Do you know?
 
Hi Karen!
It's SO nice to hear from another equally rare long-timer... Well done for being so positive after 32 years!

I don't really feel able to talk to my close friends or husband about my diabetes as it's not exactly a cheery subject and I don't want them to worry more than they already do.

I know you're right about the binge eating... I often think exactly the same thing after I've done it. My sugars always swing when I binge and this certainly does affect my mood (I get very miserable when my sugars are high). I enjoy gardening and walking, and you're right again, these would be great alternatives... Just need to resist the temptation and choose them instead!
 
Hi NTIL,

I'm 22 and type 1 for 17 yrs.

I feel completely the same about the number of appointments I find myself at!!! My friends just don't get it. And it is very annoying when you're the youngest there by about 50 yrs. I supposedly go to the 'young adult' clinic at my hospital but I never seem to see any young people there. (No offence to older diabetes patients, just nice to see people of a similar age!!)
Saying that, I did the DAFNE course and found it soo useful. I know you're already familiar with the carb counting, but it might be worth trying to find one so that you can meet other diabetics. I was much younger than everyone else on my course, but I still really enjoyed meeting and talking to other people with diabetes. (You can gang up on the doctors together that way!! 'No doctor, OUR diabetes doesn't work like that!!!')

I also have a younger sibling with diabetes (something that doctors find very 'interesting' which really irritates me - we're not a science experiment!!!)

I think it's really important to talk to your family and husband about how you feel, even if it is abit of a down topic. It's good to get it out in the open, and you don't have to talk about it all the time. Hopefully you will be able to see a pyschologist soon.
I too seem to think about/worry about death more than other people my age, some of which I think has been caused by hearing so many horror stories about diabetes. It's hard to get the balance between healthy respect for your body - realising it's not invincible, whilst not being terrified you're going to kick the bucket tomorrow!!

Anyway, not sure if any of that is any help to you but I guess it's nice to hear you're not alone!

🙂
 
Hi NTIL, if you go to this page and enter your post code it should show you where your nearest support groups are:

http://www.diabetes.org.uk/Get_involved/Volunteer/Voluntary-groups/

I suspect though, from what I've read, that the groups are most likely attended by older generation people and mostly Type 2 - simply because these are the majority of people with diabetes. Type 1 is, as you know, relatively rare at only 5-10% in this country which I believe is about 250,000 people.

I'd still ask about going on a course, you might be surprised at what you learn, and the biggest bonus would be coming into contact with fellow Type 1s from your area.

Alternatively, you might want to see if there is anyone here that lives close. A few of us in the Southampton area got together a few weeks ago and had a great time. There's another meet-up in London on November 21st with about 14 people going along (all ages and types!). You'll definitely get great support here - this place has helped me enormously over the past year that its been running.

Try not to dwell too much on the past - you can't change that, so start planning positively from today to get things under control. Set some targets for yourself to work towards, it can be a great motivator. Hopefully, you will be able to relegate diabetes to a minor inconvenience in your life, not something that dominates your day and plays havoc with your emotions. Good luck!🙂
 
Hi Flower87!
I'm not alone!! My rational, logical mind knows that I shouldn't be irritated about being the only young person at the hospital or heading off to my 10th appointment of the month (well, maybe a slight exaggeration!!), but it does!!

re "we're not a science experiment"... I know what you mean!! I find that I'm nearly always being observed by medical students in my appointments because I'm so "interesting"!! I think it's the only time in my life that I wished I was actually boring!!!!

Your post has made me smile... Thank you! 🙂
 
Northerner,
How do you know who lives where? I live about 30 mins outside London but am actually at a family function on the 21st so couldn't go to that one...
 
hi NTIL! i've been diabetic, type 1, for nearly 19 years. i'm sorry to hear you're having a rough time with it. i think everyone above has said everything i could have possibly said. one thing that sprung out to me though was i would really recommend a DAFNE (or DAFNE-esque) course - things have changed a lot since the 80s 😛 no but really, it's a very interesting course - in fact, Munjeeta has been writing up a daily report from her course, if you look back through the forum.
 
NTIL said:
Northerner,
How do you know who lives where? I live about 30 mins outside London but am actually at a family function on the 21st so couldn't go to that one...
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You can put your location on your profile, but not everyone has done that so it might be best to just ask on the forum if there's anyone interested or if they know of a group. I know there are a few members who live in the London area, so it might be possible to arrange another meet up some time - shame you can't make the 21st!

It's interesting how people are all saying they feel like the youngest when they go to the clinic - I'm 51 and I still feel that way!😱
 
Hi Ntil and welcome to the forum!:D

I am really sorry your having a rubbish time and send you hugs.

My son is 11 and is on a pump and was diagnosed 11 months ago, so although i found your post really sad i wanted to 'thank' you for bringing some of your inner most feelings into the open. Of course i would hate to think that my son would feel this way - but i have to be open to this as its his diabetes not mine. It gives us parents/carers a great insight into what it must feel like and this is a good thing in my view.

I wouldnt dream of giving you any advice about your diabetes - clearly you have years on most of us here! But as Northerner says - it may be a good idea to go on a daphne course -lots of people on here have done them and they all rave about it! I dont think its all about carb counting - there is lots of extra info involved.

The best thing is that you have found a great forum - everyone on here is lovely and no question or subject is silly. I hope you do find a way to help yourself through this and will look forward to reading your future posts with interest.🙂Bev
 
Hi NTIL
Quite agree about wanting to attend a clinic with similar people - I was diagnosed with T1D at age 30 yrs, 14 yrs ago, and clinic didn't know what to do with a fit active young female whose sole aim in life wasn't to produce babies! These days, I have found a good hospital clinic (different city, as I'd moved many times, on waiting list for DAFNE for several years, with no success yet, but at least they don't insist I visit more than once a year for annual review, and I decline offers of retinal screening elsewhere, as it's more convenient for me to get it all done at one visit. If you're interested in sport, then www.runsweet.com is good for all sports and acitivies, while MAD (Mountains for Active Diabetics) concentrates on, well, surprisingly, mountain and outdoor activities.
One irritation - the chairs for patients in consulting room are huge - I could sit in one twice over. I know it's because some (only some, not all) adults with T2D are huge, but perhaps they're the ones who should feel uncomfortable, not those of us who are normal size? I realise not all T2Ds are overweight, so a choice of 2 sizes of chairs would be better - the children's clinic is nex tdoor, so not so much need for very small chairs.
 
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Hi NTIL,
I've had Type 1 for 30 years and I know exactly what you're going through.. I had a period during my teens (I was diagnosed at age 3 back in 1979) where I just ate loads of sweets, chocolates, you name it. Like you said, I think it's kind of a rebellion against the whole "watching what you eat, testing, injecting thing" (although I never stopped injecting luckily). You do need to get over the rebellious phase though otherwise (and sorry for being so blunt) it could kill you.

Even now, every year or so I have a day where it all just gets too much and I have a bit of a cry and let all the frustration, anger, despair out. The next day, I'm back on track and just get on with things.

Last year I started to take a real interest in my diabetes and got involved in my local voluntary group (in Derby) and now find myself on its committee. Like you said though, it's mostly made up of people aged 50+ and I'm the youngest one there (at age 33!!) and I really would like to meet other Type 1s my own age but they seem few and far between. I guess I'm hoping to set a trend with continuing to go to the group though!

Online forums such as this one are a great help if you can't make it to a group but like you, I'd really like to meet someone around my own age who I could meet up with and "talk shop" with. I've never known anyone my own age with Type 1 - luckily though, my friends are great and are quite happy to listen to my diabetes-related stuff from time to time.

Anyway, try to stay positive and reach out to all the great people on online forums and support groups who you'll find are a great help.

Sam
 
hi NTIL i cant really add to whats been said already these great people have said all i would , i am just pleased you have found thid place now i have only been diabetic 9 mnth and this place has helped me no end x
 
Copepod said:
Hi NTIL
Quite agree about wanting to attend a clinic with similar people - I was diagnosed with T1D at age 30 yrs, 14 yrs ago, and clinic didn't know what to do with a fit active young female whose sole aim in life wasn't to produce babies! These days, I have found a good hospital clinic (different city, as I'd moved many times, on waiting list for DAFNE for several years, with no success yet, but at least they don't insist I visit more than once a year for annual review, and I decline offers of retinal screening elsewhere, as it's more convenient for me to get it all done at one visit. If you're interested in sport, then www.runsweet.com is good for all sports and acitivies, while MAD (Mountains for Active Diabetics) concentrates on, well, surprisingly, mountain and outdoor activities.
One irritation - the chairs for patients in consulting room are huge - I could sit in one twice over. I know it's because some (only some, not all) adults with T2D are huge, but perhaps they're the ones who should feel uncomfortable, not those of us who are normal size? I realise not all T2Ds are overweight, so a choice of 2 sizes of chairs would be better - the children's clinic is nex tdoor, so not so much need for very small chairs.
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Copepod, I am not sure why a larger type 2 should be made to feel uncomfortable? My auntie(now dead) was a large type 2 -but she had other health issues that made it very difficult for her to exercise so she put weight on obviously, but why should she be made to feel uncomfortable because of her size? Bit puzzled!😱Bev
 
Hi, I was diagnosed 42 years ago and know the feeling exactly. As a youngster the clinics really depressed me - there were all the old people (to me) often suffering from horrendous complications. For many years I was on the committe of a support group. Despite local GP's telling newly diagnosed, and existing, diabetics about us the membership was static and very much, late middle aged and older, Type II. Perhaps following the London meet we could try and arrange a Type I support group that gets together every three/four months. This could be in London initially and depending how it goes in other areas. Also what I have found is that other life events can make it worse.
 
Copepod said:
Hi NTIL
Quite agree about wanting to attend a clinic with similar people - I was diagnosed with T1D at age 30 yrs, 14 yrs ago, and clinic didn't know what to do with a fit active young female whose sole aim in life wasn't to produce babies! These days, I have found a good hospital clinic (different city, as I'd moved many times, on waiting list for DAFNE for several years, with no success yet, but at least they don't insist I visit more than once a year for annual review, and I decline offers of retinal screening elsewhere, as it's more convenient for me to get it all done at one visit. If you're interested in sport, then www.runsweet.com is good for all sports and acitivies, while MAD (Mountains for Active Diabetics) concentrates on, well, surprisingly, mountain and outdoor activities.
One irritation - the chairs for patients in consulting room are huge - I could sit in one twice over. I know it's because some (only some, not all) adults with T2D are huge, but perhaps they're the ones who should feel uncomfortable, not those of us who are normal size? I realise not all T2Ds are overweight, so a choice of 2 sizes of chairs would be better - the children's clinic is nex tdoor, so not so much need for very small chairs.
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are they no huge type one people then ?

can you also define "normal" size . id hate to think i have been abnormal all these years
 
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falcon123 said:
Perhaps following the London meet we could try and arrange a Type I support group that gets together every three/four months. This could be in London initially and depending how it goes in other areas. Also what I have found is that other life events can make it worse.
Click to expand...

Sounds like a great idea - I'd be up for that!
 
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