Hi, my partner is Type 1 and has been diabetic for 24 years.
I am concerned that he is experiencing burnout. This is because of a number of reasons:
1) We moved house (+5 to stress)
2) He has to commute for an hour to get to work each way on packed trains (+3 to stress)
2) Earlier this year his sister died at the age of 39. She was an amazing person! But CF is cruel. (+lots to stress)
3) Later in the year we found out that I am a carrier of CF (same as him), so now we are concerned with having a child naturally, and going through the genetic testing system etc takes a long time. (+10 to stress)
4) His GP surgery has been completely incompetent with his diabetic treatments - he had his first foot check over a year after joining the surgery because I specifically phoned up and requested one for him. Add to that all of the late/not produced prescriptions and all the smarmy "you missed your appointment" when we didn't even get a letter saying that he HAD an appointment, (+10 to stress)
5) The introduction of the Patient Access change of prescription method (so no more repeat prescriptions) (which the GP didn't even inform us about!) has really messed up the system we had in place (+3 to stress)
6) After recently losing vision in his left eye, it turns out that he has developed macular edema, which is seriously affecting his work (he is a software engineer). (+20 stress)
7) That means eye injections (+30 stress)
8) And the GP's have not only NOT provided any support for him during this time (+5 stress), but have actually told him that he has 30 days to change surgery as he is "no longer in the catchment area for that Drs" so they will be stopping prescribing his medication in (now less than) 30 days. (+lots of stress)
-----we knew changing Drs would be required due to the new address, but what with everything else that has been going on we haven't gotten round to it, but the hospital letters were all being sent to the old address so we phoned up to change the address to the new one and were bluntly informed that we are out of the catchment area.
Add to that Brexit, his aggressive brother bullying his parents, my writing my thesis and electrical issues in the house, he is feeling pretty rubbish. Not surprising that his control isn't therefore as good as it should be (though it is pretty good given the circumstances IMO!)
Tbf, he has tried to create a positive out of all this negativity - he has developed a diabetic diary app to help him monitor his sugars over the day. But on the whole, he feels like that the whole country is now set up to let him die. He feels that the NHS is going to fail in the next few years due to lack of funding and no support. He is concerned that he will have to start paying for medication that he Literally needs to live (Tax to Survive much?) and he's just so fed up with it all that he just wants to get out of it.
He's talking about stopping testing, he doesn't feel that he has the time or energy to go through the "finding-a-good-GP" routine AGAIN, he doesn't have the energy to go to work and can't really think when he is there, and, not frequently but enough to worry me, has mentioned thoughts of suicide.
As his partner (10years), I am trying my best to help him where I can: we have changed onto
a low carb diet to try and keep his sugars down, I have bought "think like a pancreas" to try and help me understand the science behind diabetes (but it's American, so obviously has slight differences compared to the UK way of doing things), I take him to his retinopathy/hospital appointments and try to book them for him. I listen to him when he's frustrated, and will happily do things like fetch him his testing kit/insulin/fresh needles/water/whatever I can do to make him feel better. I try to take as much of the load off of him as I can, but (understandably) that just makes him feel more out of control. But if I leave him to do it, it doesn't get done as he feels like it's all a waste of time anyway.
It's gotten to the point where he doesn't think I know enough about his diabetes to help him (which is fair, as I don't HAVE diabetes so I don't know how being "high" or "low" feels), but he doesn't trust the doctors to deal with his health properly.
So I guess what I'm asking here is, what should I do? What CAN I do to help him in a manner that doesn't make him feel worse?
(p.s. sorry about the essay, I got carried away)
(pps. I am also new to this forum, so please don't be too harsh with your responses, IF you respond. Im not hopeful :/)
I am concerned that he is experiencing burnout. This is because of a number of reasons:
1) We moved house (+5 to stress)
2) He has to commute for an hour to get to work each way on packed trains (+3 to stress)
2) Earlier this year his sister died at the age of 39. She was an amazing person! But CF is cruel. (+lots to stress)
3) Later in the year we found out that I am a carrier of CF (same as him), so now we are concerned with having a child naturally, and going through the genetic testing system etc takes a long time. (+10 to stress)
4) His GP surgery has been completely incompetent with his diabetic treatments - he had his first foot check over a year after joining the surgery because I specifically phoned up and requested one for him. Add to that all of the late/not produced prescriptions and all the smarmy "you missed your appointment" when we didn't even get a letter saying that he HAD an appointment, (+10 to stress)
5) The introduction of the Patient Access change of prescription method (so no more repeat prescriptions) (which the GP didn't even inform us about!) has really messed up the system we had in place (+3 to stress)
6) After recently losing vision in his left eye, it turns out that he has developed macular edema, which is seriously affecting his work (he is a software engineer). (+20 stress)
7) That means eye injections (+30 stress)
8) And the GP's have not only NOT provided any support for him during this time (+5 stress), but have actually told him that he has 30 days to change surgery as he is "no longer in the catchment area for that Drs" so they will be stopping prescribing his medication in (now less than) 30 days. (+lots of stress)
-----we knew changing Drs would be required due to the new address, but what with everything else that has been going on we haven't gotten round to it, but the hospital letters were all being sent to the old address so we phoned up to change the address to the new one and were bluntly informed that we are out of the catchment area.
Add to that Brexit, his aggressive brother bullying his parents, my writing my thesis and electrical issues in the house, he is feeling pretty rubbish. Not surprising that his control isn't therefore as good as it should be (though it is pretty good given the circumstances IMO!)
Tbf, he has tried to create a positive out of all this negativity - he has developed a diabetic diary app to help him monitor his sugars over the day. But on the whole, he feels like that the whole country is now set up to let him die. He feels that the NHS is going to fail in the next few years due to lack of funding and no support. He is concerned that he will have to start paying for medication that he Literally needs to live (Tax to Survive much?) and he's just so fed up with it all that he just wants to get out of it.
He's talking about stopping testing, he doesn't feel that he has the time or energy to go through the "finding-a-good-GP" routine AGAIN, he doesn't have the energy to go to work and can't really think when he is there, and, not frequently but enough to worry me, has mentioned thoughts of suicide.
As his partner (10years), I am trying my best to help him where I can: we have changed onto
a low carb diet to try and keep his sugars down, I have bought "think like a pancreas" to try and help me understand the science behind diabetes (but it's American, so obviously has slight differences compared to the UK way of doing things), I take him to his retinopathy/hospital appointments and try to book them for him. I listen to him when he's frustrated, and will happily do things like fetch him his testing kit/insulin/fresh needles/water/whatever I can do to make him feel better. I try to take as much of the load off of him as I can, but (understandably) that just makes him feel more out of control. But if I leave him to do it, it doesn't get done as he feels like it's all a waste of time anyway.
It's gotten to the point where he doesn't think I know enough about his diabetes to help him (which is fair, as I don't HAVE diabetes so I don't know how being "high" or "low" feels), but he doesn't trust the doctors to deal with his health properly.
So I guess what I'm asking here is, what should I do? What CAN I do to help him in a manner that doesn't make him feel worse?
(p.s. sorry about the essay, I got carried away)
(pps. I am also new to this forum, so please don't be too harsh with your responses, IF you respond. Im not hopeful :/)
Some of the actions being taken don't sound right to me, I'm pretty sure they can't leave him in a situation where he doesn't have access to medication essential to life. I think he needs a referral to a consultant to help him with his diabetes, particularly given the problems he has been encountering lately. I would suggest speaking to the Diabetes UK helpline - they will be able to help you both sort out your situation so you can get better care and start to see a more positive future. Contact details are on the following link:
