When earlier this month I got undiagnosed there was a wave of shock and relief. And then my brain did something like a rewrite of my projected narrative, like "And then I will just work hard and get magically better so fast everyone's head will spin." It cheered me up!
That hasn't happened, and I'm starting to hit a wall where I realize I'm still in pain, and I'm not getting magically better. Going off the baclofen and Lyrica did not free me up to suddenly dance in the streets. I'm walking more, especially around the house, and can do housework with more competence. I can wheel myself about as far as I could last fall. That's it.
I missed my appointment with the neurologist in part because of scheduling problems but in part because I just Couldn't Deal With It. It was a relief not to think about things too much in the last few weeks.
Now what? I'm not sure.
I'm so glad I didn't get any more injections ... I'm feeling very skeptical of the trigger point and botox injection routes. The botox thing especially might not be so benign and temporary as it has been presented to me. After the injections into my spine last May, which was very horrible and painful and with lasting painful aftereffects, skepticism is my friend.
By the way! I am enjoying New Mobility magazine. Here is one glossy magazine where I read all the ads -- as avidly as I read the articles. And, how fucking important and heartening to see a magazine full of other disabled people, and with bits and pieces of their complicated individual stories, not reduced to a sound bite, not over simplified. But with all the complexities of daily life, of varying pain level and ability and need for help. I noticed Kids on Wheels magazine as well and am going to suggest it to the school district and the local library. It would be very good for able bodied kids to read it and see that things are complicated... and that being disabled does not make other people alien creatures.
My legs are still cramping up or spasming; doing that thing. I don't know what to call it! And, my foot still drags and my leg goes numb and tingly. I'm doing my stationary-bike pedaling every day a couple of times a day, again. My left upper arm is still doing that thing that I think of as the Perturbing Thing that I Have Never Felt Before. (It's just not as constant or as bad as it was on the baclofen). My hands are still a bit messed up. Cold is painful and intense for me. I'm starting to think that extreme heat is also not so good; hot baths (that help pain on one level, because they warm me up) and hot tubbing leaves me oddly limp and in a whole different kind of pain.
By evening I'm ready to cry from pain and exhaustion, which probably means I'm pushing myself too hard, living a little too fast, not pacing myself during the day.