- Messages
- 286
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Hi Everyone,
This is my first time posting on this board but I am desperately seeking advice. I have been Type 1 for over 30 years now. Generally throughout my life my control has been excellent. However in the last few years I have frequently lost my hypo warning signs. In the last 3 years I have had to be attended by paramedics 3 times (always when asleep) and last night I believe I almost died. I was having convulsions and my jaw was locked etc. Apparently I was unconscious for nearly an hour before being revived by paramedics.
The issue I am seeking assistance with is other people’s understanding of how long term Type 1 affects you psychologically. Obviously after these incidences I should be going straight to my healthcare team and doctors etc. However I generally find (and these are not isolated incidents) that I get patronised and told how to live my life and when and how I should be doing things. No one ever asks me how I am feeling about it or will consider my point of view.
I currently have tried to run my HBA1C’s at about 6-7% but have been told now that for me this is too low and I need to get them higher because of my hypo risk. However I am frightened that doing this will result in all of the unpleasant side effects of diabetes that, apart from some mild retinopathy, I have avoided. When I try and discuss this with people I just get told that I don’t need to worry. As I have maybe another 30 – 40 years of this how can I not be worried about this?
I currently live in New Zealand although I am British and will be returning to the UK to live in a few weeks. Here the law is that you lose your driving licence as soon as you have to have help with a hypo and I have already lost my licence for 2 3 month periods.
So I feel that if I am honest with people I end up getting punished and then am forced to attend a multitude of appointments with dieticians, endocrinologists, nurses etc all at inconvenient times meaning I have to take lots of time off work.
I always vowed that my diabetes would never beat me but to be honest I feel so alone and isolated now. I can’t carry on living this way as I may end up dying but I can’t go to people who are supposed to help me because I feel it turns into a box ticking exercise for them. And the simple fact is not one of them actually KNOWS what it is like, particularly for us long termers. I strongly feel sometimes that diabetic professionals make decisions of my healthcare based on the latest fashionable findings. However if I follow this and it turns out to be wrong in 20 years I am the one that will suffer for it medically.
I feel like I have had enough of it and have nowhere to turn.
I was just wondering if anyone else experiences like this where they have been diabetic for many years and has basically run out of hope for their future?
Sorry for the unhappy post but I am really not in a good place at the moment
This is my first time posting on this board but I am desperately seeking advice. I have been Type 1 for over 30 years now. Generally throughout my life my control has been excellent. However in the last few years I have frequently lost my hypo warning signs. In the last 3 years I have had to be attended by paramedics 3 times (always when asleep) and last night I believe I almost died. I was having convulsions and my jaw was locked etc. Apparently I was unconscious for nearly an hour before being revived by paramedics.
The issue I am seeking assistance with is other people’s understanding of how long term Type 1 affects you psychologically. Obviously after these incidences I should be going straight to my healthcare team and doctors etc. However I generally find (and these are not isolated incidents) that I get patronised and told how to live my life and when and how I should be doing things. No one ever asks me how I am feeling about it or will consider my point of view.
I currently have tried to run my HBA1C’s at about 6-7% but have been told now that for me this is too low and I need to get them higher because of my hypo risk. However I am frightened that doing this will result in all of the unpleasant side effects of diabetes that, apart from some mild retinopathy, I have avoided. When I try and discuss this with people I just get told that I don’t need to worry. As I have maybe another 30 – 40 years of this how can I not be worried about this?
I currently live in New Zealand although I am British and will be returning to the UK to live in a few weeks. Here the law is that you lose your driving licence as soon as you have to have help with a hypo and I have already lost my licence for 2 3 month periods.
So I feel that if I am honest with people I end up getting punished and then am forced to attend a multitude of appointments with dieticians, endocrinologists, nurses etc all at inconvenient times meaning I have to take lots of time off work.
I always vowed that my diabetes would never beat me but to be honest I feel so alone and isolated now. I can’t carry on living this way as I may end up dying but I can’t go to people who are supposed to help me because I feel it turns into a box ticking exercise for them. And the simple fact is not one of them actually KNOWS what it is like, particularly for us long termers. I strongly feel sometimes that diabetic professionals make decisions of my healthcare based on the latest fashionable findings. However if I follow this and it turns out to be wrong in 20 years I am the one that will suffer for it medically.
I feel like I have had enough of it and have nowhere to turn.
I was just wondering if anyone else experiences like this where they have been diabetic for many years and has basically run out of hope for their future?
Sorry for the unhappy post but I am really not in a good place at the moment