Verticality, mostly

I am taxed with explaining my physical state by various friends online and offline. There is not a lot to tell. I am still going up and down in both pain and functioning. The ups are steadily further up. The downs are still down, but not so bad, and haven’t been too lengthy. So, last week (or was it the week before?) I had a couple, three bad days in a row, using my wheelchair in the house, staying in bed most of the time, and barely leaving the house. I had other days, in the past few weeks, of minimal activity, but able to walk around the house for food, bathroom, doing the laundry, and driving to pick up Moomin. I had a cold for a week. So, I worked from home for two and a half weeks, figuring to save the walking energy for housework.

The “up” days were fabulous, where I could not only do all the housework, walking around the house free but felt perfectly able to do a couple of blocks on crutches.

On Sunday I drove across SF and then walked with crutches across a whole giant supermarket and half a parking lot. Then I managed to get down a sandy cliff trail (not very long, but still, would have been impossible a few months ago) with crutches and sliding on my butt. I laid on the beach. My legs were spasming horribly by that point. But, I made it back up with no functional problem, just pain. Then stairs! (You see how different this is, and how encouraging!) Then I collapsed and cried and stayed in bed, unable to get my leg to stop cramping, unable to deal even with the thought of getting in and out of the bathtub, much less any more stairs or driving. In the morning, I was mostly better, with residual pain and leg cramps. It was the cramp/pain of exhaustion much like I had last fall — but, last fall I had that complete exhaustion even if I walked to the bathroom, I guess because of the Lyrica and Baclofen and a general downhill slide.

I am mostly still in the wheelchair for any distances over one block, or if there are hills, or if I am going into a store or a bar or an event where there might be standing-in-line or standing at all.

I give myself little challenges like, “Park and walk to the ATM without crutches”. I feel a little unsteady when I come out of the car. The curb (or ramp) is hard and I want to hang onto something. In the house, I am more confident, and pop up from resting in bed to lope about. It is a good home rhythm, bed/reading/writing/working, up for 10 minutes to do things, down again, recharge, up again.

Right now I would like to be in the wheelchair around the house, but I don’t want to in front of my mom-in-law because it feels like she would judge me somehow negatively. It doesn’t make sense, but there it is. Most of the day, I used the chair, but I walked a lot around the office at work. I am in pain enough that I would like to get up and wash my face and get a drink. But, I am putting it off hoping the pain will be less in a little while. If I wait till I have to pee, then I can get up and do all those things in one trip and lie down again.

I’d put myself at maybe a 5 – 7 on the Kurtze Expanded Disability Status Scale, up from the really yucky time last fall when it was more like 6 – 8.3.

Have I been back to the doctor? No… I feel like I should, but I can’t bear it.

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2 Responses to “Verticality, mostly”

  1. laura queue



    and one wants to know why, somehow, so one can replicate the general upward & avoid the general downward. but it seems like there may be no “why” …. ?

  2. fridawrites



    Having a down day, too, after several up ones where I felt pretty good. It is difficult sometimes to know whether to take the wheels out or not–today I sat in the car several minutes trying to decide. I give myself similar challenges. That’s a very useful scale–I realized I vary immensely day to day, from 5.0 to 8.5.

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