Just needed to vent for a moment to people who would get it.
I had an appointment with a neurologist today. One of my doctors wanted to do a nerve conduction study just to make sure there was no other reason for the severity of my limitations. Seemed like more trouble not to do it than it was to go, so I went.
It went better than many medical appointments, which is a sad statement. She basically said that I couldn't have CFS (my diagnosis...they don't tend to use "ME" here at all), because all the people she's seen with that "look like normal people" (I am wheelchair bound right now).
Then, after I had answered her questions and explained the super-bad effects of pushing too hard, she proceeded to imply that I "need to just start exercising sometime" and that would make everything better (pushing through to try to keep exercising before I knew any better is a big part of what crashed me out so badly in the first place - the point that I stopped pushing beyond my limits was when I started to get better rather than worse), and implied very strongly that if I was just more motivated then I would be fine. And then, to put the icing on it, she very strongly implied that if I had children, then I would be better by now.
Because, clearly, being trapped here missing out on my life is what I most want to be doing right now. And clearly, I am not an uber-motivated person. And the fact that children have been out of the question because I'm too sick surely isn't a sore spot at all. And somehow even though I was very active, it's my lack of exercise that suddenly caused me to become bedbound last April? Really?
I just want to be able to stay away from all of them, and just live my life, and use what guidance I can get via the doctors actually working successfully with ME/CFS patients, and continue to heal. I wish they would all just leave me alone. Hearing crap like that makes an already awful situation just so much harder.
And without a real specialist in my corner, every forced interaction with a medical professional just makes me cringe in case somebody decides to send a note to my insurance that says I need to be on a regime of exercise, or something. They're current treatment recommendation on file is to have me institutionalized. No joke. Thankfully, my family doctor didn't feel that I was a threat to myself or others so refused to follow up on that. So far. I hate feeling like I'm living in constant fear of what my insurance provider will assume, or decide, or misunderstand, at a time when I rely on those payments for survival. Such a frustrating and helpless position to be in.
It's a truly horrible thing with all we go through that we have to face this kind of thing on top of it all. And I know you all know that. Which is why I wanted to let it out here. Thanks for listening.
I had an appointment with a neurologist today. One of my doctors wanted to do a nerve conduction study just to make sure there was no other reason for the severity of my limitations. Seemed like more trouble not to do it than it was to go, so I went.
It went better than many medical appointments, which is a sad statement. She basically said that I couldn't have CFS (my diagnosis...they don't tend to use "ME" here at all), because all the people she's seen with that "look like normal people" (I am wheelchair bound right now).
Then, after I had answered her questions and explained the super-bad effects of pushing too hard, she proceeded to imply that I "need to just start exercising sometime" and that would make everything better (pushing through to try to keep exercising before I knew any better is a big part of what crashed me out so badly in the first place - the point that I stopped pushing beyond my limits was when I started to get better rather than worse), and implied very strongly that if I was just more motivated then I would be fine. And then, to put the icing on it, she very strongly implied that if I had children, then I would be better by now.
Because, clearly, being trapped here missing out on my life is what I most want to be doing right now. And clearly, I am not an uber-motivated person. And the fact that children have been out of the question because I'm too sick surely isn't a sore spot at all. And somehow even though I was very active, it's my lack of exercise that suddenly caused me to become bedbound last April? Really?
I just want to be able to stay away from all of them, and just live my life, and use what guidance I can get via the doctors actually working successfully with ME/CFS patients, and continue to heal. I wish they would all just leave me alone. Hearing crap like that makes an already awful situation just so much harder.
And without a real specialist in my corner, every forced interaction with a medical professional just makes me cringe in case somebody decides to send a note to my insurance that says I need to be on a regime of exercise, or something. They're current treatment recommendation on file is to have me institutionalized. No joke. Thankfully, my family doctor didn't feel that I was a threat to myself or others so refused to follow up on that. So far. I hate feeling like I'm living in constant fear of what my insurance provider will assume, or decide, or misunderstand, at a time when I rely on those payments for survival. Such a frustrating and helpless position to be in.
It's a truly horrible thing with all we go through that we have to face this kind of thing on top of it all. And I know you all know that. Which is why I wanted to let it out here. Thanks for listening.
I hope it helps, Justy.
