Hi all
New to the site but wanted to share my story. My partner was diagnosed about 6 years with type 1 when she was 24
At first, she didn't know too much about the condition and when I learned about it neither did I. You read about people having normal lives etc but the experience hasn't been that way.
For the first 5 years she struggled constantly with high sugars which has led to issues with illness, sudden fainting spells, emergency loo breaks, time off sick from work etc and it has been quite bad where a week wouldnt go by without something happening. We also suffered with incompentency from the medical profession - we think she must have had diabetes for a long while before a simple test was done (after she had collasped in the surgery with sugars about 50!) and they constantly failed to keep to appointments and at one point tried to convince her that it was in her head!
We got married last year and thought this would be our time as she was to be given a pump in May. For the first month, it was great as the pump brought her sugars dramatically down and she was really getting on with life and we were happy but only a month later she was hit with automatic neourapthy disorder which meant she was in hospital for 12 weeks. This consisted of her being sick, incredible stomach and nerve pain where the doctors tried to diagnose the issue for the first 10 weeks.
For the last 9 months, she has been getting better as her nerves grow back but still suffers from nerve pain and sickness at times and is still off sickfrom work. She can only eat very small meals with no fibre or fruit because of bowel problems. She has had a few major hypo's where I literally had to inject her with glucose and call the ambulance as it looked like she might go in a coma.
Since then she has had problems with her knee with two conditions that have meant along with her lack of energy, she has problems moving and getting up at times - we are awaiting full diagnosis on the knee and hope this can be repaired.
She is amazingly good at handling things on the outside and is one of the sweetest people you could meet although internally it really has affected her life. She has councelling provided and has regular check ups.
However all this has left me in a position where I find it hard to cope - when she in hospital I was in a position of changing jobs and had to keep her condition under wraps as I didn't want any stigma (oh thats the new guy with the sick wife) and thankfully my work has really helped keep my mind of it. But I'm still in a position where I am struggling to cope, I am snappy and constantly have bad dreams and negative thoughts about the whole situation (why us, what happens next etc).
I sometimes take it out on her and feel really helpless and feel nothing in my control. I want to be supportive but I feel such a bad person when I shout or let my frustrations show. Sometimes I end up crying to myself and if I raise some of the points to my friends they helpfully say "It must be bad etc" and "I can understand..." but they can't realise the true picture of the situation and can't beleive the situatuon at times.
I know I sound like I am whining because its not me and I'm not the one having the illness but I feel like I am by proxy and I've reached a state where I really need to do something about it before I go insane or affect my partner.
Any advice on if I can talk to anyone or anything at all would help...
New to the site but wanted to share my story. My partner was diagnosed about 6 years with type 1 when she was 24
At first, she didn't know too much about the condition and when I learned about it neither did I. You read about people having normal lives etc but the experience hasn't been that way.
For the first 5 years she struggled constantly with high sugars which has led to issues with illness, sudden fainting spells, emergency loo breaks, time off sick from work etc and it has been quite bad where a week wouldnt go by without something happening. We also suffered with incompentency from the medical profession - we think she must have had diabetes for a long while before a simple test was done (after she had collasped in the surgery with sugars about 50!) and they constantly failed to keep to appointments and at one point tried to convince her that it was in her head!
We got married last year and thought this would be our time as she was to be given a pump in May. For the first month, it was great as the pump brought her sugars dramatically down and she was really getting on with life and we were happy but only a month later she was hit with automatic neourapthy disorder which meant she was in hospital for 12 weeks. This consisted of her being sick, incredible stomach and nerve pain where the doctors tried to diagnose the issue for the first 10 weeks.
For the last 9 months, she has been getting better as her nerves grow back but still suffers from nerve pain and sickness at times and is still off sickfrom work. She can only eat very small meals with no fibre or fruit because of bowel problems. She has had a few major hypo's where I literally had to inject her with glucose and call the ambulance as it looked like she might go in a coma.
Since then she has had problems with her knee with two conditions that have meant along with her lack of energy, she has problems moving and getting up at times - we are awaiting full diagnosis on the knee and hope this can be repaired.
She is amazingly good at handling things on the outside and is one of the sweetest people you could meet although internally it really has affected her life. She has councelling provided and has regular check ups.
However all this has left me in a position where I find it hard to cope - when she in hospital I was in a position of changing jobs and had to keep her condition under wraps as I didn't want any stigma (oh thats the new guy with the sick wife) and thankfully my work has really helped keep my mind of it. But I'm still in a position where I am struggling to cope, I am snappy and constantly have bad dreams and negative thoughts about the whole situation (why us, what happens next etc).
I sometimes take it out on her and feel really helpless and feel nothing in my control. I want to be supportive but I feel such a bad person when I shout or let my frustrations show. Sometimes I end up crying to myself and if I raise some of the points to my friends they helpfully say "It must be bad etc" and "I can understand..." but they can't realise the true picture of the situation and can't beleive the situatuon at times.
I know I sound like I am whining because its not me and I'm not the one having the illness but I feel like I am by proxy and I've reached a state where I really need to do something about it before I go insane or affect my partner.
Any advice on if I can talk to anyone or anything at all would help...
