Anyone Help

[Carolann13]

I have been T1D for almost 40 years, diagnosed in 1981, I've never really had support, talked to family friends, or asked for help, but I'm feeling the complications of long term complications, neuropathy, autonomic dysfunction of the nervous system. I feel so alone, so isolated, is there anyone who feels the same, who can possibly advice me, Thank you

 

[porl69]

Hi @Carolann13 and welcome to the forum
Sorry you are feeling like this. I never really had anyone who understands what diabetes is like and the daily grind of looking after it 24/7 ir really all about. I am lucky now as I have a girlfriend of 3 years who really understands most of the time what its all about. And this forum has really helped. I have a few complications as well, blind in my left eye and stage 4 CKD. This site is a good place to vent frustrations out on. You will always get a lot of advice on here from people with similar stories/complications. This is a really helpful site. I am sorry I cant be of more help BUT I am sure someone will be along soon to give you some advise x

 

[Antje77]

Welcome to the forum, @Carolann13 !
I'm a newbie with diabetes, and thankfully complication-free, but there are many people on here with the same problems you have, and many others always willing to listen and offer a virtual hug.
Why don't you have a look around the forum, chip in on threads you find interesting or where you can help and ask any question you have.
Good luck!

 

[LooperCat]

Welcome to the forum lovely, I don’t know any T1s in real life either, but get loads of love and support here from people that truly understand what it’s like. Sending hugs x

 

[Juicyj]

Hello and welcome @Carolann13 I know only those i've met in here, having online support is vital I believe to help you cope and understand the daily psychological and physiological effects of living with type 1. Tell us more about what your insulin regime is like and what support you get from your team ? Hopefully with more support you can feel more positive about this

 

[NicoleC1971]

Hello and welcome. Snap re year of diagnosis! I happen to know some real life diabs who I met 10+ uears ago via my local DAFNE course. I also volunteer with Diabetes UK and have met fellow type 1s through this work. It was and is such a relief to talk to people who get what a rubbish thing this is to deal with at times. I've had sight complications and worry about the other things you mention too but there is usually someone on here who has had direct experience should you need a rant!

 

[Lynne C J]

You'll certainly get some advice and hugs from other T1's on here. I'm T1 for 38 years but don't have your complications. Hang in there, you'll get some helpful advice from someone soon.

 

[micksmixxx]

I have been T1D for almost 40 years, diagnosed in 1981, I've never really had support, talked to family friends, or asked for help, but I'm feeling the complications of long term complications, neuropathy, autonomic dysfunction of the nervous system. I feel so alone, so isolated, is there anyone who feels the same, who can possibly advice me, Thank you

Welcome Carolann13,

First, young lady, you've made an excellent choice in speaking out about how lonely and isolated you've felt all these years with the lack of support, which I guess, and I MAY well be wrong, from the medical staff dealing with you and your diabetes.

I was diagnosed in 1980 and had very little support from the medical profession for the first 15-20 years. Happily, I can say that I now have the world's best endocrinologist looking after me. Not long after he started working at the hospital that I attend, he attended a diabetes conference in the United States where he spoke with a former Miss America, who happens to be a type 1 diabetic, that was displaying an insulin pump.

As he is 'forward thinking' he asked for more details about how pumps work, etc. and mentioned that he had someone in mind who might like to trial it. (I was the first person in the area that I live to have been issued with a pump, and I'm so glad that I received it.)

Prior to having a pump, I was injecting anywhere between 7 and 10 times a day, in a deliberate attempt to try and keep my blood glucose levels anywhere near the 'normal' range, and was spending almost as much time in hospital as I was at home. This, to me, was an indication of just how lacking the support I was receiving was.

I can't lay all of the blame on the medical profession as I did have a 'bit of' a drink problem which, I guess, made certain people feel that I wasn't worthy of the support.

The diabetologist that I was seeing at my initial diagnosis told me that I'd have to give up all the exercise that I was doing now. Looking back, the guy should PROBABLY have retired, or kept up with modern information, as I'm sure that we all know now that exercise is particularly good for diabetes management.

To be truthful, I doubted that I had diabetes. They MUST have got my notes mixed up with someone else. I'd recently left my Army service, and was 'super-human fit', regularly running marathons to raise money for charities, etc. That was, of course, before I knew much about diabetes.

Sadly, all those days are behind me now. I can't walk more than about 20-30 years using elbow crutches before I'm on the floor, spending most of my time in a wheelchair.

I'm sure you'll recall from the time of your diagnosis that there were no insulin pumps then; no blood glucose testing meters; no disposable syringes, no diabetes specialist nurses; no certified diabetes educators, etc. Ooh, the joys of having to test your urine to measure your sugar (glucose) levels, and boiling your syringe and needle in a saucepan before injecting each time ... and the size of those needles was more akin to a javelin than a needle. lol.

Like yourself, I've also developed a number of diabetes-related complications over the years ... retinopathy; peripheral neuropathy; autonomic neuropathy (which controls such things that are normally taken care of 'automatically' by the body ... bowel and bladder function; blood pressure control; sexual function; temperature control; hypoglycaemia awareness; digestion, which has it's own special name of gastroparesis).

I don't want to keep going on about me, ma'am. I simply wanted you to know that you are NOT alone.

Now that you've made this very important step, Carolann13, you WILL find that there are some very knowledgeable and supportive people here. If, however, you wish to speak with me directly, you can send a communication/personal message by clicking on the envelope icon at the top right of the screen. If you do decide to take this option, ma'am, once you click on the envelope icon, the page will change and a green button will appear at the top right of the screen that says Send a New Private Message. When you click on this, you will need to fill in the username of the person you wish to send your message to.

I do hope to get to speak to you again, Carolann13.

Lots of Love and Light.

Mick
x x x x
x x x

P.S. Please don't be offended, or alarmed, at the 'x's'. It's merely a logo, of sorts, that I've used for some 40-odd years now.

 

[RAPS_od]

Hi, Carolann13, and welcome to the forum!
I'm really happy you came here. I'm a T1 for 50 years, and I can SO relate to that feeling of isolation and separation from those around me who don't have diabetes.
I was diagnosed when I was 12. No one in my family had diabetes or knew anything about it. It was a real struggle! The first night I was home from the hospital, I had boiled meat with boiled, mashed potatoes (8oz, with no butter, salt, milk, or pepper). As time went on, if my siblings or friends who knew I was a diabetic saw me eating candy, they'd rip it out of my hands shouting, "You're not supposed to eat that!" even though my BG was extremely low. More often than not, I'd end up in the hospital for a week or two, which only complicated my feelings of isolation.
I was lucky. I got to attend a camp for T1 diabetics, first as a camper, then as a counselor. It really, really helps to know people who know what it's like when you've eaten all the right things and still have high BG, or know how the panic feels when you need glucose LIKE RIGHT NOW.
You've got a lot on your mind; diabetes is manageable, but not easy. Because you're focused on staying alive, it changes your thoughts and your actions - and that makes you different than those who haven't discovered their mortality yet. Around the rest of us sweet pees, you can let down your guard.
I have complications, too. I have neuropathy, charcot, and retinopathy. I've had laser surgery on my eyes. I have some kidney damage. Thinking about these ailments and complications can be lonely-making, but I talk about things with my non-diabetic peeps so they know a bit more and I'm a bit less lonely.
Coming here is a really good place to find others with issues, what they do about them, and how they feel about them. I hope to see your name a lot more often!