This is what my partner would say in the earliest days of their "crash" last December. We were both waiting for the alarm bells to be sounded, and a doctor to come racing in to the rescue after hearing how severe their condition was, ready to help. But nobody was coming.
I've been really... distraught, recently, about how hard it is to find any medical professional willing to help. I spoke to M's GP last week, and she seemed almost confused that they weren't showing any signs of recovery. Almost embarrassed maybe, that nothing she's done (if you can say she's done anything) has made any difference, she turned it round on me. She started insisting on seeing M, coming to the house to do a physical examination and blood tests. I asked what for, and if she had any ideas or anything particular in mind, and when she had no good reason, I explained, yet again, why that would be harmful for M. They can crash for a whole day if I accidentally clink a glass, it's not worth the risk of having a doctor come in, turn on the lights, move them around, ask them questions, take blood. It could cause a major setback to their recovery for no good reason. She then said "I'm starting to get a little uncomfortable speaking to you- I haven't seen or spoken to Mina in months, you won't let me, and this puts up the warning signs of abuse." I mean, what am I even supposed to say to that? You haven't done a good enough job but instead of admitting that you're passing off blame to the one person actually advocating for your patient?
I also asked her (with as much politeness and decorum as I could) if she could refer them to or request a consult from a doctor with more understanding of their condition. The so-called "ME/CFS Specialist Service" provided by our local NHS hospital just sent me a YouTube video on leg stretches and asked if I'd heard about breathing techniques. They need a doctor who actually knows about ME, and the autonomic dysfunction that is particularly affecting them the past few months, and can prescribe medicine and treatments, not just throw different SSRI's and see what sticks.
She said no though.
So I've been trying to research NHS consultants on my own. I've already dropped £300 on a private specialist, but that appointment isn't until June and they can't live like this until then. But even this is no easy task, I search for doctors with an interest in autonomic dysfunction, chronic fatigue, POTs, but all the ones I find are outdated, have no contact info, all at different hospitals, different websites. Most it's unclear how to see them, if they even practice or take patients anymore.
Why is this so hard, where is the magic doctor that will swoop in and help?
The last thing the GP said is, "so what is M's general ability to do things around the house?" I said "what do you mean around the house? They're still bedbound, still haven't sat up, still need to be fed liquid meals through a straw, and have me help them use a bedpan. They lie in the dark and silence all day, every day, as they have for four months now." She seemed surprised, shocked even. Has she even been listening to me? Is she scared, because she doesn't know what to do?
I'm tired of having to be the only person putting any effort in. I turned 27 last week. I still have to work my full time job from home, while still waking up at 3am to feed my partner. I still spend all day researching, and reading forums, and asking questions, emailing, screaming HELP US into the void. And still, nobody comes.
I've been really... distraught, recently, about how hard it is to find any medical professional willing to help. I spoke to M's GP last week, and she seemed almost confused that they weren't showing any signs of recovery. Almost embarrassed maybe, that nothing she's done (if you can say she's done anything) has made any difference, she turned it round on me. She started insisting on seeing M, coming to the house to do a physical examination and blood tests. I asked what for, and if she had any ideas or anything particular in mind, and when she had no good reason, I explained, yet again, why that would be harmful for M. They can crash for a whole day if I accidentally clink a glass, it's not worth the risk of having a doctor come in, turn on the lights, move them around, ask them questions, take blood. It could cause a major setback to their recovery for no good reason. She then said "I'm starting to get a little uncomfortable speaking to you- I haven't seen or spoken to Mina in months, you won't let me, and this puts up the warning signs of abuse." I mean, what am I even supposed to say to that? You haven't done a good enough job but instead of admitting that you're passing off blame to the one person actually advocating for your patient?
I also asked her (with as much politeness and decorum as I could) if she could refer them to or request a consult from a doctor with more understanding of their condition. The so-called "ME/CFS Specialist Service" provided by our local NHS hospital just sent me a YouTube video on leg stretches and asked if I'd heard about breathing techniques. They need a doctor who actually knows about ME, and the autonomic dysfunction that is particularly affecting them the past few months, and can prescribe medicine and treatments, not just throw different SSRI's and see what sticks.
She said no though.
So I've been trying to research NHS consultants on my own. I've already dropped £300 on a private specialist, but that appointment isn't until June and they can't live like this until then. But even this is no easy task, I search for doctors with an interest in autonomic dysfunction, chronic fatigue, POTs, but all the ones I find are outdated, have no contact info, all at different hospitals, different websites. Most it's unclear how to see them, if they even practice or take patients anymore.
Why is this so hard, where is the magic doctor that will swoop in and help?
The last thing the GP said is, "so what is M's general ability to do things around the house?" I said "what do you mean around the house? They're still bedbound, still haven't sat up, still need to be fed liquid meals through a straw, and have me help them use a bedpan. They lie in the dark and silence all day, every day, as they have for four months now." She seemed surprised, shocked even. Has she even been listening to me? Is she scared, because she doesn't know what to do?
I'm tired of having to be the only person putting any effort in. I turned 27 last week. I still have to work my full time job from home, while still waking up at 3am to feed my partner. I still spend all day researching, and reading forums, and asking questions, emailing, screaming HELP US into the void. And still, nobody comes.
