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 ☺