Type1. New to forum

Kazlow

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Type of diabetes
Type 1
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I'm new to the forum so forgive me if I've written this post in the wrong place. Maybe someone can tell me if I'm posting where I shouldn't ☺

I'm a bit hesitant to post my story because I don't want to scare anyone but I'm desperate for some support.

My name is karen and I've been type 1 diabetic for thirty five years. I got diagnosed at 10 years old, when glass syringes where still in use and blood sugar monitors where as big as laptops. I did start well, I did everything I should but by thirteen I began to go off the rails. Kids at school thought I was weird and bullied me because I couldn't eat everything they could. I felt isolated so I ended up pretending I didn't have diabetes and I stopped all blood tests and only did injections when I felt like it. My poor parents did everything they could but I wasn't interested. I had a wonderful consultant and he really tried to help me. He told me that if i didnt look after myself I could go blind or lose my legs later on in life. I didn't listen to him so over the years I didn't always have the best control. When I was in my thirties I was diagnosed with Periferal Neuropathy in my hands and feet, extremely painful but it did make me look after myself better. However too little too late. Three years ago after years of being really sick specialists from around the country diagnosed me with severe Diabetic Autonomic Neuropathy. They told me I wouldn't live past five years and my life would be extremely difficult. They weren't kidding either. It's a complex illness but in short it's shutting down all my organs at a fast rate. It is caused by years of neglect, the length of time I've had diabetes and just bad luck it's so severe. So now I have a ileostomy bag because my bowel doesn't work, I self catheterise as bladder doesn't work, severe gastroparisis and heart problems. Can't control body temp always freezing cold, kidneys don't function properly, no energy etc etc. Every organ every nerve and fibre are damaged. I'm also going blind and seven months ago had a right below knee amputation. My other foot also has three ulcers which won't heal up because my system is so damaged. Another amputation is on the cards. I only have an estimated two years left but I'm trying to make the most of it. I'm up and walking with a funky prosthetic and when I have the energy I try to do whatever I can. Even managing to cook a Sunday roast is an achievement for me. I don't sit around feeling sorry for myself though as in a way I've bought this on myself. Now the specialists keep me conformable with morphine because I'm in incredible pain and as there is nothing more they can do I'm just left to get on with it. I feel so alone sometimes as I've got nobody to talk to who is in the same position as me. I have a wonderful husband though who gave up work to look after me. He does everything to help me and is just wonderful. He's my hero.

I'm sorry if this post is long but I'm hoping to be able to find someone to talk to or support from or just to have a laugh with. I'd like to hear other stories and maybe I can be of support myself.

Thank you for listening ☺
 

himtoo

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why can't everyone get on........
Hi @Kazlow
welcome to the forum :)
you really are having a tough old time of it for sure.
Type 1 here for 43 years and have some issue with my eyes but it is currently being treated.

thanks for sharing your story and I'm glad you have some support in your life.

there are loads of us on here with varying degree of issues, and there are always new people joining the forum everyday , so I for one hope you can continue to offer your knowledge and support going forward.

all the best
paul
 
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Kazlow

Member
Messages
24
Type of diabetes
Type 1
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Pump
Dislikes
The cold
Hi @Kazlow
welcome to the forum :)
you really are having a tough old time of it for sure.
Type 1 here for 43 years and have some issue with my eyes but it is currently being treated.

thanks for sharing your story and I'm glad you have some support in your life.

there are loads of us on here with varying degree of issues, and there are always new people joining the forum everyday , so I for one hope you can continue to offer your knowledge and support going forward.

all the best
paul
Thank you Paul for your welcome. I'm having trouble with the app I downloaded on my phone. There is nowhere to post a reply. I've had to use the Internet to post this reply. Have I done something wrong??
 
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himtoo

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Retired Moderator
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mean people , gardening , dishonest people , and war.
why can't everyone get on........
@noblehead , @azure
just tagging you in case you know how to help @Kazlow with posting from an app
i use an old fashioned home PC and am like the dinosaurs in jurassic world - beyond extinction -- LOL
 
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noblehead

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Beyond my comprehension @himtoo.

@Kazlow, welcome to the forum, so sorry that you've had so many problems over the years. Best wishes.
 
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azure

Expert
Messages
9,780
Type of diabetes
Type 1
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Sorry - I don't use the app so I'm not sure how to reply on it. But I wanted to say welcome, @Kazlow

Thank you for sharing your story. It moved me to tears. I'm so sorry that you've had so many problems and are in so much pain. I hope you can find some support here.

Take care and best wishes to you. X
 
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Kazlow

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Type 1
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Thank you for the warm welcomes and trying to help me with the app, think I'll stick with using the full site as it seems easier.....I think!!!
Thank you noblehead and azure for your posts. Yes definitely find life hard but it is what it is and I just gotta get on with it. Feeling sorry for myself won't get me anywhere.
I do worry about my type 1 diabetic son though. He is going the same way as I did. He was diagnosed at 8 and ten years on he still refuses to do blood test or lies about doing them and he doesn't take his insulin when away from home or even at home to tell the truth. He has been neglecting his insulin to lose weight and is now stick thin. At home we make him do his insulin in front of us but he's even managed to fake that. He knows I'm dying from diabetes but doesn't seem to care if he goes the same way. Have taken him to three psychologists and one counsellor but no results. What else can I do. He runs at HI all day everyday. Been in DKA more times than I can remember and ended up in intensive care everything. Last time they had problems getting his kidneys to function properly. Finally got correct levels but took a week. I'm not going to be around to look after him later on if he gets what I have. His step dad, my husband, will have to look after him but is it fair for him to nurse me till death then do the same again for my son. It's heart breaking really. I'm going to look for some threads about difficult diabetic children, if you have some, and try to find some advice. Gee what's a gal gotta do to catch a break
Hope everybody here is well and look forward to chatting to you.
 
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4ratbags

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Messages
3,334
Type of diabetes
Type 2
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Diet only
Hi and welcome to the forum. I never realised just how bad the complications of diabetes could be. I hope you stick around the forum as it sounds like you could offer some great advice. Thinking of you. (((HUGS)))
 
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Kazlow

Member
Messages
24
Type of diabetes
Type 1
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Pump
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Hi and welcome to the forum. I never realised just how bad the complications of diabetes could be. I hope you stick around the forum as it sounds like you could offer some great advice. Thinking of you. (((HUGS)))
Hi 4ratbags hope you are well and thank you for your welcome. To be honest I grew up thinking the only complications of diabetes were amputations and blindness. I only found out about Autonomic Neuropathy when I got diagnosed three years ago. It's when the vagus nerve (second largest nerve in the brain) develops neuropathy. It's the nerve which stimulates our organs to work. When it's damaged your body shuts down. Organs stop working even if they're healthy organs they just stop. Normally these things happen in your sixties and you die of a silent heart attack but I'm just unlucky lol. It's a very painful death and affects so many things. Body temp, as sweat glands pack up, lowblood pressure (mine is always 52/41 approx) so many things get affected and there really isn't enough info out there. I have had to explain to top consultants about the illness before, even my new diabetic doctor. I will say however it's rare to get all the symptoms as I have but it does happen. Years ago doctors couldn't understand why so many diabetics were dying of heart attacks, then they found out about Autonomic Neuropathy. You don't get any warning signs of a heart attack so it doesn't get treated. I hope I'm not scaring anyone because I'll say again not every diabetic will develop this. But it does happen unfortunately and I think it's good to make diabetics aware because caught in time with only one or two symptoms it can be reversed by right sugar controls. Thanks again for your welcome and the hugs, much appreciated. Have a good day everyone ☺
 
C

catherinecherub

Guest
Thank you Paul for your welcome. I'm having trouble with the app I downloaded on my phone. There is nowhere to post a reply. I've had to use the Internet to post this reply. Have I done something wrong??
Hi and welcome to the forum. You are one brave lady.
I will tag @Administrator for you to see if he can solve the problems you have with the app.
Take care.
 
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Kazlow

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Thank you very much Catherinecherub that would be great. Nice to meet you.

You too RRB, nice to meet you and thank you all for making me feel welcome. This is a great site.
 

azure

Expert
Messages
9,780
Type of diabetes
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Hi again. That's upsetting about your son. Do you think the forum could help him? He might not feel so different maybe?
 
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Administrator

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Administrator
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Hi there - what app problems are you having? If you PM me I'll get the appropriate guide sent to you!
 
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Kazlow

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
The cold
Hi again. That's upsetting about your son. Do you think the forum could help him? He might not feel so different maybe?
Yes that is good idea maybe he won't feel alone. Sometimes I think because I'm the only diabetic he knows he just thinks he will end up like me so what's the point. Maybe if he reads some of the stories on here he will realise people can live well with diabetes. Thank you for the idea I will see if he will join. Are there many teens on here with diabetes??
 

Kazlow

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
The cold
Hi there - what app problems are you having? If you PM me I'll get the appropriate guide sent to you!
Thank you I will try to work out how to pm you. Computer illiterate unfortunately but learning ☺ what a wonderful site you and others run.
 
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azure

Expert
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Yes that is good idea maybe he won't feel alone. Sometimes I think because I'm the only diabetic he knows he just thinks he will end up like me so what's the point. Maybe if he reads some of the stories on here he will realise people can live well with diabetes. Thank you for the idea I will see if he will join. Are there many teens on here with diabetes??

Absolutely. Whatever age you are, it can be a real boost and comfort to find other people with diabetes. He could also look at the Type 1 forum and read about the many adults leading good lives despite their diabetes.

Here's the Children and Teen forum:

http://www.diabetes.co.uk/forum/category/children-teens.46/
 
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Kazlow

Member
Messages
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Type of diabetes
Type 1
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The cold
Absolutely. Whatever age you are, it can be a real boost and comfort to find other people with diabetes. He could also look at the Type 1 forum and read about the many adults leading good lives despite their diabetes.

Here's the Children and Teen forum:

http://www.diabetes.co.uk/forum/category/children-teens.46/
Thank you azure ill have a read now. Think it would be good for him. Did his sugar today and it was HI. Been like this for weeks. I think he isn't doing his long acting insulin as he knows he can lose weight this way or he just can't be bothered. I try to watch him do his insulin but he's 18 and doesn't like me watching. It's a tough one. Thanks again azure for taking the time to answer me.

Just had the podiatrist to dress my heal but she found two more ulcers!! I'm terrified that my other leg will be amputated sooner than I thought. I can accept I'm dying but I am so scared to lose my other leg. It's just not healing. Sorry just having a little moan ☺
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
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Pump
I'm sorry to hear about your ulcers. Please feel free to moan as much as you want. You have every reason to. Diabetes can be a cruel condition.

Regarding your son, it sounds like you've tried everything to help him. Does he have friends he'll listen to? If he reads around the forum, he'll see he's not the only young person rebelling against diabetes sadly. Sometimes teens will listen more to their peers than older people, especially if those older people are their parents! It must be hard watching him neglect his diabetes so much.
 
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