Why there won’t be another neurologist
Or, ‘how to sack your neurologist’, part two
I’m doing this as a separate post, or the previous one would have run to dissertation length.
So, anyway, as discussed previously, my neurologist and I parted ways this morning. This afternoon I could have been looking for another one. But instead I spent time thinking, and reflecting, and decided that, all things on balance, it’s best not to. There are a significant number of reasons for this. The most important one being, I want my funny back. And getting my funny back is something I can only see happening if I stay the f*ck away from those sense of humour draining sucubi.
If I asked for a new referral straight away
The best case scenario
I *might* get to see someone in the next 4 to 6 months
They *might*, after a lengthy, stressful, time consuming and expensive process, figure out a name for what ails me
And *might* be able to slow down or symptomatically relieve some of the progress of the disease. Bearing in mind that anything that could be cured has long ago been ruled out.
Having a name for what ails me would go a long way to the social acceptability of my disability, and possibly help very slightly in my work situation. It *might* assist me in claiming some small supports such as a freedom pass and DLA.
What I would lose in the mean time
1. 1. Very, very considerable amounts of time
This stuff sucks the marrow from the bone of life. Everything takes time, and time, and more time. There’s a doctors apt to be made. Months waiting. A test to be run. Weeks waiting. Results. Weeks. Another test. Weeks more. Any real progress could only happen over several years, from what I can see. And at what cost? All this waiting is massively time consuming, leading to false hopes, and wasted time, and waiting, waiting, waiting… where nothing else happens and all of life revolves around illness and attempts at illness maintenance. A life given over to illness maintenance and waiting for something to happen is not a life I can cope with living.
2. 2. Any potential positive relationship with my new GP. That could lead to reduced life-expectancy faster than any mysterious neurological illness
I’d have to make this first appointment with a new GP, who would be totally unfamiliar with me, or anything about me, and with nothing but some case-notes history to refer to. And in that meeting I’d have to admit to him or her that I struggle with this undiagnosed illness that causes me to have significant disability. Only there is not a doctor in existence without an abhorrence and deep seated prejudice against undiagnosed illnesses. To date, I have always managed to retain very positive and supportive relationships with my GP’s, even when the specialists suck, and I’ve always presumed that it’s because the GP’s see all of me - including but not limited to - the me with the sudden and instantaneous fevers of 104, the asthma attacks and the blood counts through the floor when the anaemia flares, so they know there is something not quite right. But they also see me in other times, when I’m coming by for routine B12s etc, and they know I don’t over-complain, or over utilise their time or services. And no GP yet has written me off as a crank with ‘psychosomatic symptoms’. They have always stood by me against the idiot consultants. But, that’s in the context where they KNOW me. If I were to go and demand another neurology referral now, it would be on top of having tried to get an anti-biotic from my new GP and been refused an appointment because I had not been on the system the required ‘5 to 10 working days’ required before actually seeing the doctor. I’d be a crank before I ever walked in the door. It would not be a good start to what could be a 5 or more year relationship, and I’ve seen only too clearly that having a GP decide from the outset that you are a crank who complains about ‘nothing’ can lead to illnesses being written off, and that gets life-threatening and potentially fatal fast.
3. 3. My sense of humour
I want my funny back. I was reading over old posts looking for the date of something the other night, and it struck me how, before this round of hell, I used to post really funny posts in my journal all the time. OK, I’m not sure any other living soul gets my twisted sense of humour, but *I* was laughing reading back on them. I haven’t posted a funny since Christmas with the exception of the snake-on-my-head, and I’ve only the cats to thank for that. I mean, heck, you could be an hour away from death and you’d have to laugh if your cat came and dropped a still wriggling snake on your head while you slept as a present - only as hard as I was laughing, I was also still shrieking a bit when I posted, and I’ve a feeling it was only the shrieking that came across, as much as I’ll always remember the laughter too. I want to be able to laugh at life again, and when all my posts are about coping with disability and waiting on doctors to get their act together, that can’t happen. When I was still quite disabled but not seeing doctors I was happier, I was funnier.
4. 4. My mental well-being
Seeing doctors gives hope, vain, inglorious, doomed hope that something will mend, that a magic pill that will let me garden all day and go hill walking will be found. That I can one day run for a bus. Which is just stupid. Because I can’t. And doomed hope brings with it utter despair when time and again its proven wrong. Hope is endlessly uncertain, and brings fear as its other half. If I’m hoping I don’t know for certain and therefore I’m afraid. I’m tired of being afraid. I know I’m disabled. I know its draining my life away. There’s no uncertainty to it. If I bin the hope I bin the fear, and can at least be funny in the meantime.
And that’s why I don’t want to see any more evil neurologists. I don’t need the state, or its sock-puppet the medical profession, to legitimise my disability. If work can’t deal with that, they’ll answer to my lawyers, not my doctors. The end. Decision taken.
I’m doing this as a separate post, or the previous one would have run to dissertation length.
So, anyway, as discussed previously, my neurologist and I parted ways this morning. This afternoon I could have been looking for another one. But instead I spent time thinking, and reflecting, and decided that, all things on balance, it’s best not to. There are a significant number of reasons for this. The most important one being, I want my funny back. And getting my funny back is something I can only see happening if I stay the f*ck away from those sense of humour draining sucubi.
If I asked for a new referral straight away
The best case scenario
I *might* get to see someone in the next 4 to 6 months
They *might*, after a lengthy, stressful, time consuming and expensive process, figure out a name for what ails me
And *might* be able to slow down or symptomatically relieve some of the progress of the disease. Bearing in mind that anything that could be cured has long ago been ruled out.
Having a name for what ails me would go a long way to the social acceptability of my disability, and possibly help very slightly in my work situation. It *might* assist me in claiming some small supports such as a freedom pass and DLA.
What I would lose in the mean time
1. 1. Very, very considerable amounts of time
This stuff sucks the marrow from the bone of life. Everything takes time, and time, and more time. There’s a doctors apt to be made. Months waiting. A test to be run. Weeks waiting. Results. Weeks. Another test. Weeks more. Any real progress could only happen over several years, from what I can see. And at what cost? All this waiting is massively time consuming, leading to false hopes, and wasted time, and waiting, waiting, waiting… where nothing else happens and all of life revolves around illness and attempts at illness maintenance. A life given over to illness maintenance and waiting for something to happen is not a life I can cope with living.
2. 2. Any potential positive relationship with my new GP. That could lead to reduced life-expectancy faster than any mysterious neurological illness
I’d have to make this first appointment with a new GP, who would be totally unfamiliar with me, or anything about me, and with nothing but some case-notes history to refer to. And in that meeting I’d have to admit to him or her that I struggle with this undiagnosed illness that causes me to have significant disability. Only there is not a doctor in existence without an abhorrence and deep seated prejudice against undiagnosed illnesses. To date, I have always managed to retain very positive and supportive relationships with my GP’s, even when the specialists suck, and I’ve always presumed that it’s because the GP’s see all of me - including but not limited to - the me with the sudden and instantaneous fevers of 104, the asthma attacks and the blood counts through the floor when the anaemia flares, so they know there is something not quite right. But they also see me in other times, when I’m coming by for routine B12s etc, and they know I don’t over-complain, or over utilise their time or services. And no GP yet has written me off as a crank with ‘psychosomatic symptoms’. They have always stood by me against the idiot consultants. But, that’s in the context where they KNOW me. If I were to go and demand another neurology referral now, it would be on top of having tried to get an anti-biotic from my new GP and been refused an appointment because I had not been on the system the required ‘5 to 10 working days’ required before actually seeing the doctor. I’d be a crank before I ever walked in the door. It would not be a good start to what could be a 5 or more year relationship, and I’ve seen only too clearly that having a GP decide from the outset that you are a crank who complains about ‘nothing’ can lead to illnesses being written off, and that gets life-threatening and potentially fatal fast.
3. 3. My sense of humour
I want my funny back. I was reading over old posts looking for the date of something the other night, and it struck me how, before this round of hell, I used to post really funny posts in my journal all the time. OK, I’m not sure any other living soul gets my twisted sense of humour, but *I* was laughing reading back on them. I haven’t posted a funny since Christmas with the exception of the snake-on-my-head, and I’ve only the cats to thank for that. I mean, heck, you could be an hour away from death and you’d have to laugh if your cat came and dropped a still wriggling snake on your head while you slept as a present - only as hard as I was laughing, I was also still shrieking a bit when I posted, and I’ve a feeling it was only the shrieking that came across, as much as I’ll always remember the laughter too. I want to be able to laugh at life again, and when all my posts are about coping with disability and waiting on doctors to get their act together, that can’t happen. When I was still quite disabled but not seeing doctors I was happier, I was funnier.
4. 4. My mental well-being
Seeing doctors gives hope, vain, inglorious, doomed hope that something will mend, that a magic pill that will let me garden all day and go hill walking will be found. That I can one day run for a bus. Which is just stupid. Because I can’t. And doomed hope brings with it utter despair when time and again its proven wrong. Hope is endlessly uncertain, and brings fear as its other half. If I’m hoping I don’t know for certain and therefore I’m afraid. I’m tired of being afraid. I know I’m disabled. I know its draining my life away. There’s no uncertainty to it. If I bin the hope I bin the fear, and can at least be funny in the meantime.
And that’s why I don’t want to see any more evil neurologists. I don’t need the state, or its sock-puppet the medical profession, to legitimise my disability. If work can’t deal with that, they’ll answer to my lawyers, not my doctors. The end. Decision taken.