First, I would like to say a little something about why I stopped seeing my shrink before I get into my rather depressing day. My shrink had told me I should not be working. Period.
And I agreed of course. But I said it was not so simple.
And she said I should go on long-term leave and permanent disability.
And I said it is not so simple. Yes, that makes perfect sense to me, to her, and to any other rational person when you think about chronic pain and inability to function. That is not the way the insurance world works though, so getting on long-term leave is next to impossible. They go out of their way to prove you can do a job which means you are not completely disabled. I beg to differ mind you, because even a job, of any sort, requires a brain and also requires the ability to get up and leave the house. Any job that has specific hours, no matter what those hours are, no matter if a trained monkey could perform that job, still requires someone able to meet those hours. Calling in sick repeatedly with that simple job is just as problematic with any other job. So she pissed me off by saying I should take advantage of options that I actually can’t take advantage off. I stopped seeing her when I was cleared to return to work… because I was not put on long-term disability, thus proving I was right and she was an idiot. And I stand by that today.
So, I went to my neuro appointment. And we are now at the point where there is nothing he can do for me. Yay!
Every time I hear this from a doctor it makes me very sad. Because they take away that last itty bitty shred of hope I was holding onto. It is worse this time because he had options those other docs did not… and I’ve now run out of those options.
Plus my numb hand thing? Is migraine related and could actually be permanent damage so might be there forever. It is nerve damage. And the vertigo? Also migraine related and also might never go away. One of my preventatives is the best one for migraine-related aura symptoms and it obviously is not working for me, although it does help with some of the visual stuff… not the worst of it, but some.
So all that migraine-related symptoms and all those migraines you think maybe Now I could go on long-term leave. But no. Of course not, for the same reason I listed above, he said it is very difficult to get done because they will prove I am somehow capable of holding down a job. To clarify that means a) I am in constant pain and b) there will be no relief and c) that is not ‘sick enough’ to go on disability and d) apparently I should be fine with that.
Once again I wonder if they want us to kill ourselves. I think they must. Problem solved right? Can’t work anymore and not a drain on the healthcare system. They ought to just advocate suicide as a final treatment option. They leave us no other options. Just figure out how to suffer well and quietly and be functional at a job, somehow. Or don’t work and starve but suffer less. But don’t kill yourself because for some reason that is just wrong… sure it is a living hell to have to live with constant migraines while working a full-time job but apparently, that is better? Not so sure about that. Might just need to see a shrink to deal with all the depression associated with being in constant pain, working a full time job while I am at it with the full awareness it will never get better, there will never be any relief and apparently while there are no treatments left to try there are also no options to make that pain more bearable. It is cruel really. So cruel. Is it so hard to offer options to those of us who have no effective treatment? Is it so hard to say this person can’t work full time anymore, she needs options to lessen the pain while functioning as much as she can? Instead of forcing us to work full-time, which makes the pain and symptoms worse, with no effective treatment until eventually, if we are very, very lucky, we stroke out and die. Finally, then, we get some relief. What bastards.
If that is not depressing I don’t know what is. If there were viable options available it would not be, but as it is, very depressing. Unless I figure out something on my own. There will be no help for me otherwise and I will go on like this until I have a flipping nervous breakdown. Or worse. So hopefully I will stave off depression and try to find alternative solutions. Wish me luck with that. What my neuro is going to do is switch up my medications to one I was on years ago… which is about what I expected him to do anyway. At least it is something. If that doesn’t work, which honestly having a hard time with the optimism at this point, then he will send me to a headache specialist clinic four hours away, which has an insanely long waiting list and he said likely won’t have very many other options, but he has none, so it’s something.
As such I am totally screwed. I have not been doing well on the work front lately but apparently, treatment or no treatment, pain or no pain, able to see or blind as a bat, I have to figure out a way to work, get through the pain on a daily basis, not miss any days, figure out how to be able to concentrate and make no errors when at work with a migraine. Now if I knew how to do that I would already be freaking doing it wouldn’t I?
But apparently, that is my job. It is my job to figure out how to suffer well, function in pain without getting suicidal in the process. There is no middle of the road for us even. You think there would be some sort of options available. And there are for people with chronic pain disabilities on some sort of special list, of which, apparently migraines are not (because they must think we cannot have them all the time and are therefore capable of working some of the time, not for me, but maybe some of us, in which case I would love to find the job where ‘some of the time’ is a work option). I know people can get long-term disability for FMS, but I also know some people who got screwed over after two years on it when it changed from ‘unable to do the job they are trained for’ to ‘unable to do a job’. And you know that distinction pisses me off.
I would love to find a job that is fine with me being sick often, fine with me only working at 50% of my capacity most of the time, and has such flexible hours that I can come in when I am able. That is not a job, that is no job I’ve ever heard off except a work at home one. And hell we would all love a work from home job but finding that is a little more difficult because it is not a job, it is a very specific job style that most employers do not have for an option. So what those insurance dudes are really saying is yes you can’t work your full-time desk job but you can work some sort of very flexible work at home job for less money assuming you can find such a job, but because such a job does exist, somewhere, and if you found it you would be able to do it on a basic level, therefore you are clearly not completely unable to work. Asshats.