It's been a fairly quiet weekend here at the Nuthouse. House full of kids in and out, Moomin's friends and Peanut from next door. They're in the hot tub right now all flailing around. (Thankfully supervised by someone else.)
I have done increasing amounts of housework and cooking and playing with kids over the past week since stopping baclofen). I also looked a bit at work again finally (not working so much as just paying attention) and poked at some layout for poetry books. In short, I've been perking up and able to do more.
Days have been pretty good, but by evening I'm in a lot more pain and am unsteady on one or both feet.
My right foot and calf remains messed up. It does all the weird things it's been doing; right now it hurts and my outer toes and ball of foot is weird and tingling and numb, and doesn't seem to work right.
It's nice... really nice! to have my arm strength back. I continue realizing how bad the last two months have been.
Also the strength in my left leg. I can go up stairs slowly with alternating feet. NOt all the way up a flight of stairs, but a bit of the way, with the crutches or 1 crutch and handrail.
I worked all afternoon helping Zond-7 pack some more for final bits of moving to his new place. Mostly I did the kitchen and I did it sitting down in a chair. We got back here & I collapsed & he helped me take off my boots and pants. I took half a vicodin. An hour later or so I took a very perfect bath.
You realized that on the baclofen I barely had the strength to wash... and to get undressed and get in the tub and dress again was an ordeal... so exhausting and painful & miserably cold to get undressed & then be wet afterwards. I was bathing only every 2 or 3 days, for all of November and December.
I look at how I was after the EMG and I was bad, but you know? Not worse than I was other times, like this spring. It was the drugs that messed me up catastrophically, & how.
RANT ALERT. Here it comes!
Mailing list buddies are telling me all the details of their years and years of diagnosis and un- and re-diagnosis. People who were told PLS, then rediagnosed with it, then had abnormal EMGs, then didn't then had lesions and then didn't later... It's obviously a hot mess. Looking at all the emails, what I see is that by the time you've been through 10 years and 6 diagnoses you're on 6 different drugs and who knows which end is up any more. Add that bit of data to my conviction that we are all vulnerable to overdrugging and this just strengthens my resolve to stay off all the drugs that get thrown at me. If I wanted, even slightly, I could right now legally be on vicodin, carisoprodol (Soma), baclofen, and Lyrica, with ambien on top and anti-depressants and anti-anxiety meds on top of THAT. In short I could be high as a kite every second of the day if I told doctors that I felt better that way -- because I'm upper middle class and have insurance. While people vastly more miserable than I am cannot get the most basic medications necessary for their health; and while other people in difficult situations can't get any sort of medical care or psych help and turn to street drugs and get thrown in jail.
I have more ranting to do, but not here & now. Must process a bit more in semi-private before I bust out with it.
Oh... and it feels a little weird for people to congratulate me on being un-diagnosed. I mean thanks but, it's just odd feeling and I don't know what to say. Thanks but you know what things are still hard and I'm still in pain and still afraid for my future in so many ways. Yes, it's a relief that I have some objective evidence of not having ALS. Yes, it's a huge though somewhat qualified relief to have another neurologist say I don't have PLS and she doesn't think I have MS either. I mean, yay. But... on the other hand... still in pain and disabled and dealing with the same things I have been since early last year. And still with a hefty chunk of uncertainty as to why and what happens next. I've still got one neuro saying one thing and the other disagreeing. I do appreciate it that other people are and have been worried about me and haven't wanted to hear it that they might have to see me go through a progressive illness. But, you will have to bear it that I'm not like... BETTER. okay?