Support needed

[Dora12]

hi there. I’ve been a type 1 diabetics since I was 7 (17 years now) and I’ve never really though much of it. Being at uni my levels were not monitored and I’d say I lost a fair bit of control. Since leaving uni and joining the real work Ive started testing a lot more and really trying to get things under control. I just find no matter how hard I try I can’t seem to find the balance and im fluctuating all the time. I’ve never really thought about it before but I’m going to have to deal with this for the rest of my life and I’m struggling with the possible long term side effects I’m likely to face. I have background retinopathy even though my hba1c is 63. Not really looking for diabetic control advice. Just more want to hear that I’m not the only person struggling with this awful disease and others are feeling the same as me

 

[Knikki]

Well I will say Hello and Welcome to the Forum.

T1D is not one of those things you can ignore.
I'm afraid your in it for the long haul but saying that it can easily be controlled. It really is just up to you, your one that can control this condition, its your diabetes and no one else's. Just like mine is mine and I manage mine differently to others and will and can eat anything, nothing is off the menu as far as I am concerned.

The mount of information available and help you can get from medical professionals these days is fantastic and as a suggestion I would get in contact with you medical team and or DSN to see what they can do to help.

T1 is a PITA BUT it should not stop you from doing anything, you have a dream then there is not nothing to stop you.

Me?

I have back ground retinopathy but I get checked every year so it is monitored and has not changed in 5+ years and I still have everything else including appendix.

This is coming from someone who was diagnosed in 1965 and has lived through the late 60' 70's 80's etc where diet and the condition and control was not understood anywhere near what it is today.

I hope things work out for you and that you keep posting on here

 

[WuTwo]

My GP always says that I am the greatest expert on my own diabetes, because we are all different and diabetes brings each of us a different set of trials and tribulations. I have to say I agree with him.

That said, you can eventually get to the stage where it isn't front-and-centre of your life, but something you live side by side with. Sounds weird but I know what I mean....

Keep on posting and you'll understand that everyone of us has our own difficulties but together we can find ways to make them not so overwhelming.

 

[Diakat]

@Dora12
We all struggle at times. It’s great to hear that you are testing now you are out in the real world and thinking it all through. No one is perfect, but these days there is more info and technology around to make it all a bit easier.

 

[Bluey1]

I can promise you, you are not alone. Join the club, we all struggle at times.

 

[Dora12]

Thank you for your replies. It’s just nice to know I’m not alone @Knikki out of interest, you don’t have any other side effects from the diabetes? I’ve never met anyone who’s had it as long as you and I do worry that it’s going to effect me when I’m older

 

[Deleted Account]

Welcome to the team @Dora12
I have had type 1 nearly as long as you (15 years) although I was diagnosed a little (20+ years) later than you, Most of the time I have been pretty good at monitoring it and my conclusion is unless I want to limit my lifestyle (diet, exercise, stress, ...) fluctuating all the time is just part of my life.
For me, I don't think about managing (and certainly not "controlling") diabetes, I think about managing my life which includes diabetes. This means a balance. Just like when you decide whether you are going to splurge on a big holiday out or save your money for a rainy day (or ... when you get older ... retirement), I have to decide whether I am going to eat the occasional pizza, drink the occasional cocktails, do the occasional (or regular) workout, try to compete in a stressful career or focus on my diabetes all the time to avoid fluctuation. I chose the fluctuations but my balance comes in learning (as best as I can) when those fluctations happen and being ready with a corrective insulin dose or tube of GlucoTabs.

No one can decide for you what your balance is, how much stress you can handle, how much risk you want to take with diabetes complications but I found it useful to decide what was the right balance for me. I also review this every so often when I apply for a new job, decide to try out a new sport (the last one was flying trapeze), go on another adventurous holiday or move in with my boyfriend.

 

[Knikki]

Thank you for your replies. It’s just nice to know I’m not alone @Knikki out of interest, you don’t have any other side effects from the diabetes? I’ve never met anyone who’s had it as long as you and I do worry that it’s going to effect me when I’m older

No worries

Nope just a bit of back ground retinopathy, which does not affect my sight.

No your not alone, certainly not round here as there is usually someone around you can bend their ear

As for the "worry about the future" well I don't know what the future holds any more than you or any one else. I can't say how your T1 will effect you, because I don't know your history nor am I medically qualified.

But saying that if you get checked up and eyes checked and a regular basis, say once a year, then there is no reason why more complications as a result of T1 should affect you, I mean, looking at it another way, you could walk out the door tomorrow and get run over, silly, but true.

There are plenty of walking wounded around the forum, who for one reason or another have ignored their condition and paying the price in later life, but the ones I know, have turned things around and now live life to the full they are more an inspiration than me just waffling on

I know the issues that this condition we share can have on the body if I ignore it but I don't let it get me down, there is no point, life is too short, too many things to do and see, too many friends to go out with, too many people on this forum to annoy.

Come join us in some of the other T1 threads and see how we deal with T1D, the ups, the downs and the frustrations, it may just take your mind of worrying about it

Take care

 

[Cumberland]

hi there. I’ve been a type 1 diabetics since I was 7 (17 years now) and I’ve never really though much of it. Being at uni my levels were not monitored and I’d say I lost a fair bit of control. Since leaving uni and joining the real work Ive started testing a lot more and really trying to get things under control. I just find no matter how hard I try I can’t seem to find the balance and im fluctuating all the time. I’ve never really thought about it before but I’m going to have to deal with this for the rest of my life and I’m struggling with the possible long term side effects I’m likely to face. I have background retinopathy even though my hba1c is 63. Not really looking for diabetic control advice. Just more want to hear that I’m not the only person struggling with this awful disease and others are feeling the same as me

Welcome Dora

It’s a rollercoaster ride it really is

Some good folk on here at hand to help you.

I was diagnosed aged 20 I’m now 55

You mentioned that you have some background retinopathy keep an eye on this (excuse the pun)

I have retinopathy too and over the years it resulted in cataracts in both eyes I’ve had one eye sorted cataract removed and sight restored awaiting a date for my other eye (which is not impairing my vision too much but I know there’s a cataract there.

Were all fighting individual battles with diabetes and were all in it together on here, the support is wonderful on this site

Complications are a swine and it’s terrible just what can crop up linked to our conditions but you’re young and based on ever increasing knowledge you can control diabetes and live a life to the full max

Take care

 

[JAT1]

hi there. I’ve been a type 1 diabetics since I was 7 (17 years now) and I’ve never really though much of it. Being at uni my levels were not monitored and I’d say I lost a fair bit of control. Since leaving uni and joining the real work Ive started testing a lot more and really trying to get things under control. I just find no matter how hard I try I can’t seem to find the balance and im fluctuating all the time. I’ve never really thought about it before but I’m going to have to deal with this for the rest of my life and I’m struggling with the possible long term side effects I’m likely to face. I have background retinopathy even though my hba1c is 63. Not really looking for diabetic control advice. Just more want to hear that I’m not the only person struggling with this awful disease and others are feeling the same as me

Hello Dora and Welcome ! I'm sure you will sort it all out with patience and commitment.

 

[Vix85]

hi there. I’ve been a type 1 diabetics since I was 7 (17 years now) and I’ve never really though much of it. Being at uni my levels were not monitored and I’d say I lost a fair bit of control. Since leaving uni and joining the real work Ive started testing a lot more and really trying to get things under control. I just find no matter how hard I try I can’t seem to find the balance and im fluctuating all the time. I’ve never really thought about it before but I’m going to have to deal with this for the rest of my life and I’m struggling with the possible long term side effects I’m likely to face. I have background retinopathy even though my hba1c is 63. Not really looking for diabetic control advice. Just more want to hear that I’m not the only person struggling with this awful disease and others are feeling the same as me

Hi @Dora12

You’re not alone in the slightest; I’ve had diabetes for 30years now and I was a terrible teen.. like you though I settled don once at work (well not properly until my late twenties!)
And getting the levels under control can seem unrewarding.. but you’ll get there!

Have you been on the DAFNE course?

And yes it is scary when you think of long term complications.. but just keep trying your best, make sure you attend all of your appointments and most of all, be kind to yourself!

Don’t waste your days worrying.. you could get hit by a bus tomorrow anyway (That’s just my outlook!) x

 

[petedusty]

Hi Dora,
I am also a newbie here but not to T1
I have T! for 50 Yrs
Please don`t be discouraged with the ups and downs but be vigilant in your effort to gain control! You have many resources at your control learn as much as you can about T1D. Use them all. This seems to be a go place to get sound advice.
Your life need never surrender to diabetes. You can do any and everything you want!
But please, please know that you must not settle for mediocracy H1acs above 7.0 because increased complications are the price you will pay.

 

[MauroM]

Dora,
You're definitely not alone.
I don't have much to add beyond what others already said.
The way I see it, diabetes leaves us more sensitive to our surroundings and habits (food, stress, illness...). Almost everything has an effect on our blood glucose readings. It is harsh and cruel to expect a perfect control of something we have to manually adjust considering it would otherwise be automatically corrected. To my knowledge, what we can do (and I feel that's a good approach) is keep monitoring how our body is doing, correcting when necessary and doing our best to maintain a healthy and sustainable lifestyle (a good healthcare support helps a lot with these).
I too worry about future complications, even if I've never seen any sign of one (13 years since diagnosis). It's the risk and uncertainty that scares me sometimes, but as others said, there's also a risk of being ran over and I don't let it scare me from crossing the sreet.

 

[NicoleC1971]

Hello and I hope you've got a bit of hope by now. I've always found not many answers from consultants but more by finding my own way and latterly by getting insights and ideas from You Tube. As you have discovered there's so much more to it than counting carbs and matching doses of insulin without even mentioning the human/emotional factors of managing a demanding chronic condition like type 1.
Some of the scientific people on You Tube I've found interesting are:
Dr Catherine Crofts Beyond Insulin
Dr Ian Lake (UK gp who is type 1)
Dr Ben Bikman (insulin and glucagon)
Marty Kendall (his wife is type 1)

Adam Brown has also done a good guide (free) called Bright Spots and landmines (the book he wished he had had when getting to grips with his type 1)

Hope this is of interest and there is plenty of support here. We all manage our t1 in different ways and have a vast experience of complications, frustrations and successes so hope you can check in here when you have something to share, vent or ask about.

 

[Grant_Vicat]

Thank you for your replies. It’s just nice to know I’m not alone @Knikki out of interest, you don’t have any other side effects from the diabetes? I’ve never met anyone who’s had it as long as you and I do worry that it’s going to effect me when I’m older

Hi @Dora12 Like @Knikki I had Type1 for 54 years ending with a kidney/pancreas transplant in 2013. In 1971 I was regularly getting blurry vision, caused by persistently high blood sugar. I was told in 1973 that I was passing protein. At the age of 15 this didn't really register. At the age of 20 I had my first laser treatment for retinopathy. At 24 I had my final laser treatment. My kidneys staggered on right up till 2103. What you see in my avatar shows that I wear glasses, but only for reading. I can drive, and do whatever I feel like doing all these years later. The key is that since 1979 I was very strict with my blood sugar management and stuck rigidly to a fixed carbohydrate diet. When I was put on a minimal protein/phosphate diet, because of poor kidney function, I kept to it well enough to prevent the need for dialysis. Since you have done the best thing, which is to seek advice and reassurance, I feel you stand a far better chance of not travelling down my route. In spite of what looks like a catalogue of disasters, I have so far had a most fulfilling life. I wish you all the best with yours.

 

[Vix85]

Hi @Dora12 Like @Knikki I had Type1 for 54 years ending with a kidney/pancreas transplant in 2013. In 1971 I was regularly getting blurry vision, caused by persistently high blood sugar. I was told in 1973 that I was passing protein. At the age of 15 this didn't really register. At the age of 20 I had my first laser treatment for retinopathy. At 24 I had my final laser treatment. My kidneys staggered on right up till 2103. What you see in my avatar shows that I wear glasses, but only for reading. I can drive, and do whatever I feel like doing all these years later. The key is that since 1979 I was very strict with my blood sugar management and stuck rigidly to a fixed carbohydrate diet. When I was put on a minimal protein/phosphate diet, because of poor kidney function, I kept to it well enough to prevent the need for dialysis. Since you have done the best thing, which is to seek advice and reassurance, I feel you stand a far better chance of not travelling down my route. In spite of what looks like a catalogue of disasters, I have so far had a most fulfilling life. I wish you all the best with yours.

Hi,

Thanks for this post, I love to see refreshing stuff like this!

Can I just clarify.. you’ve had a Pancreas transplant?? I’ve never heard of that before.. do you still take insulin? Can you share more with me? I hope you don’t mind me asking.

Vicky

 

[Grant_Vicat]

Hi,

Thanks for this post, I love to see refreshing stuff like this!

Can I just clarify.. you’ve had a Pancreas transplant?? I’ve never heard of that before.. do you still take insulin? Can you share more with me? I hope you don’t mind me asking.

Vicky

Hi @Vix85 I don't mind you asking at all. My kidney function had reached a bad enough level in 2000 for me to be referred from West Suffolk Hospital to Addenbrooke's (Cambridge University Hospital) they reckoned I would need dialysis by 2005 or even a kidney treansplant. Being afraid of anything invasive, including hypodermics, I did exactly as I was told. By early 2012 they were discussing a kidney transplant. One day a pancreatic specialist was also in the room with the head transplant professor (that sounds bad!) and they asked me what I thought about having a pancreas transplant in addition to a kidney transplant. It was as though I was woken up in the middle of an otherwise ordinary dream; as though everything I had accepted over the last fifty-two years had simply been a nightmare. These men were God. Up until that day I had been resigned to being diabetic for the rest of my life, but at least with a replacement kidney. My mind became a turbine. The unpalatable thought of being under the knife, at considerable risk to life, was far outweighed by the likely benefits. I never had any doubt that Addenbrooke's, one of the finest transplant centres in the world, would deliver the goods, or organs.
Naturally I said "Go for it!"
"You need to think about this and discuss it with your family. There are considerable risks involved."
All I can tell you is that I have not had an insulin injection of any kind since 12th August 2013. I have been on at least 7 (currently 9) immuno-suppressants a day. These cause tremors in my hands which can be a right pain when trying to play the piano and organ, or to keep a pencil or brush steady, especially within 3 hours of taking them. Exactly 5 years to the day I had a check up and my blood chemistry suggested organ rejection. Thankfully after 5 months this has righted itself. I must also stress that a transplant is only done when the patient's life is under considerable threat, Even then my heart in particular needed to be in good condition. They would not normally carry the double transplant out on a patient over 50, but they proved, through a multitude of tests, that apart from my kidneys and islets, I was very fit for my age. Incidentally @leahkian has been through the same experience. I rather think that medical advances will produce a computerised pancreas well before you would reach the stage I had. I wish you minimal problems with dealing with the relentless old devil. Good luck!

 

[endocrinegremlin]

You are not alone <3

 

[Grant_Vicat]

Hi,

Thanks for this post, I love to see refreshing stuff like this!

Can I just clarify.. you’ve had a Pancreas transplant?? I’ve never heard of that before.. do you still take insulin? Can you share more with me? I hope you don’t mind me asking.

Vicky

Sorry, I forgot to add that although it is still relatively rare and I don't know how many have been done to date, over 100 had been done in the UK by the start of 2014. A fairly exclusive club!