March 14, 2010
I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.
Going to see the neurologist, for example.
I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.
This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.
It's frustrating as hell.
And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.
So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.
But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.
I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.
Now that's an irritant.