14 years with T1 and my fears and hopes for the future

[Pete33]

Hey guy's, today is the 14th anniversary of my diagnosis :clap: I've faced many an adverse challenges, and shall face many more in the future. Diabetes is unpredictable to say the least eh.

I don't think it's unusual to say that I fear for my future; health both physically and mentally, because you just never know what your diabetes is going to throw at you next. My BM's to this day are still pretty well controlled; of which I'm pleased about, but the thing that crushed the most when first diagnosed, and still does does to a certain extent ; is the fact that you've no real choice; almost as if you've been stripped of it. I mean to that when for example a non-diabetic fancies a piece of cake or a chocolate bar, they will of course have it, because they've a "choice" in the matter. Instead we live within a regime; a self regulated regime at that, meaning if you don't abide by it then all you doing is making a rod for your own back.

I don't want to give the impression that I live under a rain cloud, far from it. I have a beautiful; whom I hope to have children with one day, a good group of friends and a decent job. Although I'll always have that nagging voice at the back of my mind saying to me "Why me?" "What did I do to deserve this?" Again, you folks know what I am saying. I can only assume that it's a depression that is linked with the diabetes.

Like all of us of course, I would wish for a cure; but I'm a realist and know that there shall probably never be one.
So instead I'd like to witness in my lifetime; much better treatment, improvements in the way in which Insulin could be administered.
Advances in Insulin itself.

So tell me. What are the biggest challenges you face with your diabetes?
What are your irrational/rational fears?
What are your hopes for the future?
What for you would be a tangible solution to those fears?

Thanks in advance
Peter

 

[noblehead]

Good post Pete and most diabetics will relate to what you have wrote.

I think at some point we have all asked the question ''Why me'' and there's no shame in admitting that, my hopes are much the same as yours......a cure of sorts and better treatment..... as in fewer injections and better ways of measuring bg control.

Fears, well I try not to think to hard about those, I suppose complications and what old age might bring are two but to be perfectly honest I try and stay positive rather than dwell on the negatives, we only get one shot at life and it's up to us to make the most of what we've got.

 

[lisamariebrankin]

My daughter Ava is 18 months old, having being diagnosed at just 13 months old... i found myself asking myself what sort of life is my baby girl going to live???

I dont know any1 else hu has t1 diabetes and everything was new to me... to say that it has been a huge learning curve is an understatement, but slowly but surely we are getting there as a family. I trust everything the professionals say but to actually hear good things from you guys on here hu actually have to live with this day in day out has been great!!

Life has changes millions, everything is routine and schedules... but all that goes through my mind is that i am sooooo lucky to still have her after being so close to losing her.

I now know she can go on to be like a perfectly normal little girl and diabetes isnt going to stop her doing what she wants in life!!! I will teach Ava and encourage her to try can keep control of her diabetes as much possible as i do worry about complications when she is much older.

 

[Pete33]

Hey guys, thanks so much for reading my post Noblehead, I know exactly what you are saying about not dwelling too much on the negatives as it's important to live life as normally as possible. However the importance of realising your "limits" in all things I think is paramount as I'm sure you know.
How long have you been a diabetic ? If you don't mind me asking.

Lisa, I'm really glad you've such a positive attitude for your daughter. With progressive technologies in diabetes treatment; I think she will have a far greater chance of managing her diabetes with greater ease. I wish you and your daughter all the best

Speak soon
Peter

 

[noblehead]

I don't mind you asking at all Pete, I've been type 1 for 31 years now.

 

[sophie evans]

i am sophie i am 14 years old i have been type 1 for only 2 months now ,and i am very fearfully to what might happen in the future .i am very confused can anybody give me any tips on how to keep my sugar levels down ,and i would like to know if diabetes becomes any easyly in life , and how do people cope whith there diabetes .if you dont mind me asking . i am on insulin injection 4 times a day and on night lantus . could anybody avidece me on how to deal with my feelings .

 

[Pearsall85]

I've been type 1 since August last year and I've learnt a hell of a lot in a short amount of time and I'm still finding things out every week. It is a massive learning curve so I've learnt to not get myself down when I get high blood sugars but just to note what I did wrong so to try and prevent it next time. I've got the rest of my life to try and get the best possible control I can achieve but it is a huge task so just got to roll with the punches as they say.

Stu.

 

[Gemima]

I've been T1 for 4 and a half years now, managing sort of ok, generally keeping my levels balanced, but I do fear for the future, my long term health, side effects etc. but what's been niggling at me lately is the fear of having/not having children, the worry of a child having T1 ( I was diagnosed at 22 and its been tough, can't imagine a poor child coping) plus the pregnancy issue, the difficulties and the potential for my control (or lack of) being the cause of congenital malformations, increased birth weight, and all manner of complications that enter my head from day to day! I'm nowhere near in a position to have children but this is something that does worry me, basically another thing that is different to "normal" people!


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[Lucypieee]

I've been diabetic for 15 years, from the age of 8. I had 6 good years. 5 bad years. 4 years getting better.

Biggest challenge I faced was my Dad passing away when I was 14 (sparking off the 5 bad years). It took me a long time to get through that, and I still strruggle remembering (or bothering) to blood test and inject. But, as I want a pump to assist with my (poor) control, I've had to step up and start bloodtesting and trying to look after myself.

Biggest irrational fear? Probably that I don't feel I have much of a future. That my diabetes will stop that, in one way or another.

Personally, my hope for the future is living as long as I possibly can. Hopefully being funded for a pump this year and gaining better control. Advances in insulin is far more realistic in my lifetime than a cure is (unfortunately).

 

[Lordy100]

I've been Type 1 for 26 year and I have to say its not actually stopped me doing anything. I've got two horses who I look after, ski, ride a motorbike and just got my lorry categories back on my driving licence so will be able to drive my horsebox. Not quite sure why Luciepiee feels she doesn't have a future!

I was diagnosed when I had to go for a company medical for a new job, the people who carried out the medical told my future employer before they told me! Anyway that's a long time ago.

This site is brilliant for top tips from people who have been there, done it and got the T shirt. You need to remember that what goes on in the future is very much down to how you manage your own health. Don't let the fact that you have diabetes cloud your horizons, reach out and grab things with both hands and live your dreams as you only get one chance.

Sorry I am responding really to Luciepieeee.

Biggest challenges: keep testing!
Irrational/rational fears: they take away my lorry licence
Hopes for the future: a cure is found
Tangible solution: take head of advice given and try and get better HBAIC results

 

[GlazedDoughnuts]

What are your irrational/rational fears?
- Being struck with some disease that poses an imminent risk, let's be fair as long as blood sugars are controlled it's a fairly easy game for us adults. I guess it's harder for children due to raging hormones.

What are your hopes for the future?
- To carry on doing what I am doing now, which is: exercising regularly, enjoying a balanced diet not devoid of any food type.
- Taking my Insulin as required.
- Complete my studies.

What for you would be a tangible solution to those fears?
- To maintain a healthy lifestyle and enjoy life as it is. What will be, will be. We're not in control of the future, but we can do little bits to mould a brighter future.

 

[Lucypieee]

I've been Type 1 for 26 year and I have to say its not actually stopped me doing anything. I've got two horses who I look after, ski, ride a motorbike and just got my lorry categories back on my driving licence so will be able to drive my horsebox. Not quite sure why Luciepiee feels she doesn't have a future!

I was diagnosed when I had to go for a company medical for a new job, the people who carried out the medical told my future employer before they told me! Anyway that's a long time ago.

This site is brilliant for top tips from people who have been there, done it and got the T shirt. You need to remember that what goes on in the future is very much down to how you manage your own health. Don't let the fact that you have diabetes cloud your horizons, reach out and grab things with both hands and live your dreams as you only get one chance.

Sorry I am responding really to Luciepieeee.

Biggest challenges: keep testing!
Irrational/rational fears: they take away my lorry licence
Hopes for the future: a cure is found
Tangible solution: take head of advice given and try and get better HBAIC results

We're talking irrational fears. Mine is that I won't die for natural reasons when I'm 90 or so (for example) but when I'm in my 60's because of diabetes.
I'm 23 and have had diabetic complications, sparked off when I lost my Father at the age of 14 and I was on a downward spiral.

It's not a case of me feeling like I cannot do things, I know I can do whatever I want. (Heck, I spent a good 5 years not looking after myself when my Dad died), and I have never felt otherwise, it's that feeling that I have a shortened life. I am well aware there are no guarantees (if there were my Father wouldn't have died suddenly at 51), however, I also know that statisticly, I am more likely to develop heart problems (this is even more likely with the fact that my father died from a heart attack and his Father from heart disease), I also have an underactive thyroid that runs down the female line of my family (this risk is also increased with my diabetes).

I don't go around thinking these things all day every day, but it doesn't change the fact that it's an irrational fear at the back of my mind. And as I said, it's not about not being able to do things, but about not surviving.

 

[LemonTree]

I have had T1 for the last 14 years too - I was diagnosed at 18 when I went to register at the University GP. I think I've been winging it for the last 14 years - I've never been really bad at controlling it but I've never been really good either. I am trying to change the latter now - mainly because I might (hopefully) have a family and I would want to give my child the very best chance it could have for it's health.

My hopes would have to be that I have, and am able to have, a healthy baby and to be around for as long as possible to see it grow up.

My fears... well I don't know that I have any. I could have excellent control of my diabetes but die of cancer. My mum has acute glaucoma so there's a good chance I will get that and lose sight like she has. No one knows what life will throw at you. I suppose you just have to do the best you can when you can. We all have ups and downs.

 

[bambi51]

Hi. I have been diabetic for 41 years now, I was only 10 when it was diagnosed. Over the years I have had good and bad times and I have generally put up with and got on with the injections & diet, but it is now that I am starting to get concerned about the future. The last couple of years has seen me have an operation for cataracts & carpel tunnel and I have had frozen shoulders for a number of years, which although has got better still bothers me. I have also started to get tingly feet! which is another worry, especially as an elderly relative of mine ended up minus 2 legs! On the plus side I have been fit and healthy in every other way upto late 40's and hopefully will continue to have a good life. Always look on the bright side and enjoy yourself for the moment

 

[bowersgifford]

I have been a T1 for 48 years and I still work full time for a large bank - I cannot afford to make mistakes!
You just have to keep fighting it in your mind that it will not win.
I am now on a pump & have been for 5yrs which was a great step forward as my hypo's were far less severe & often.
A lot of my complications came when I was put on Levimuir etc.

I now have neuropathic pain & have started to go through various medications to find the right drug to help me. Apart from that Diabetes has not stopped me doing very little. Although I do not have children out of choice.

I hope this is of some positive info for you. :wave: