The pain I have suffered from my spine and the tremors the last two days make me very aware of what I can't do. Water therapy went better today except for the fact that I cannot get certain muscles to move. I just looked at them, waiting for a response and nothing happens. I kept thinking, "move, damn you, move." Nothing. And the therapist doesn't even get what is going on. They just think my muscles are too tight. The muscles aren't working.
I heard from the neurologist's office (mine's out, this was his partner) and they said I should have gone to the ER. Darn, I hate the ER. But if the symptoms happen again and they will, I'll go. Besides, Tuesday I see the Neurologist any way. I didn't realize that these autoimmune diseases could cause spinal and nerve damage. I guess they left that out of the owner's guide and the special orientation meeting we all get in our Rheumy's office. That's what's so hard about this illness. Most people respond the medications and then there are people like me that just get complication after complication.
This 81 year old man gave me this lecture today about how I just needed to keep moving. It was the standard lecture which I'm sure that you've all heard. He was there with his wife who has all these problems and he was pretty much blaming her for them becoming couch potatoes. I just broke into tears and told him he had no idea how hard I've been trying. He was such a sweet man, but I also felt bad for his wife. She kept looking at him like "he's never going to get it." But he totally loves her. I just couldn't stand another, "you just need to get in shape speech." I wonder if he would have given the guy who was in the wheelchair in water therapy the same speech.
It so hard when people mean to be kind, but they are really cruel. I didn't need that right after my denial from SS. I told him he was being cruel, as nicely as I could. But he was making me cry by going on about what did I do before I got sick, how active was I? Could I ride a bicycle? He can. I haven't been able to since this all started.
I love to watch ice skating and little kids. I am absolutely amazed that people can get their bodies to work that way. Kids especially. Their little bodies just move with all this energy and thoughtless action. It's beautiful.
Sometimes I feel that people just don't understand what it means to have an auto immune disease that they simply can't comprehend what we go thru on a daily, heck even hourly, basis. They see all this media hype where 1 Aleve cures all. Or the latest Enbrel commercial where people are running and riding horseback after just like 1 dose of the med. So people just naturally expect us to be up running. They don't have a clue that one auto immune disease causes a whole host of others.
I read an article on the web recently about RA attacking nerves etc. I thought I saved it in my favs but I guess I didn't. If I can reach thru this current brain fog (day after mtx shot fog lol) and remember where I saw it I will post it here or PM it to you.
My husbands family blames me for our change in lifestyle and that I have to have him do a lot more stuff more me. I always hear..."Why couldn't you do that...he works you don't." I finally got sick of everything and snapped back to SIL that if I could do it don't you think I would. How would like to lose your independence and sense of self worth because you can't take care of your family like you used to. I even got lectured about how I shouldn't let my arthritis interfere with our decision to move to WI (where it is colder than IL by far lol) because my husbands job was too go to pass up. What the heck? Am I freakin 15 years old? We will deal with my arthritis. It isn't like there are not docs up here. GEEESH. Even tho people may mean well, that doesn't mean you let them make you cry or feel bad. Stand up to them. Tell them how it really is so they can maybe try to understand and won't be so well meaning with the next person and unintentionally hurt their feelings too. Unless we get the message out there on how it really is, people will go on thinking it is like those Aleve and Enbrel commercials. Which are so misleading it is pathetic. The right information is power.
I wish I was still fluid in motion. I miss that too. I was always athletic. I watch my youngest play video games and wish my fingers and hands worked that fast again.