Where do I go to hide from MS? Is there a place I can just hang out for a day or two and not be reminded that I have this spectre of physical impairment following me around?
Lately I feel drained and really tired towards the end of a day. In the morning I have a decent energy level and breakfast is generally very satisfying. Lunch is my biggest meal of the day and I’m still moving along at a good pace. But after work I’ve got very little left in me and if I have dinner, it had better be early so that I don’t end up going to bed on an empty stomach. Not much else happens after I get home at the end of the day.
Today is Saturday and I have been busy doing laundry, and helping organize my son and daughter-in-law’s things as they settle in here for a while. I even washed walls in hopes of doing some painting this weekend.
I could feel the strength leaving my legs and arms by about 4:00 and after a shower I could barely move. It frightens me to not be able to function. My vision is blurry. It takes a lot of effort to move my legs. My arms seem really tired. All of this is frustrating because I feel inadequate, weak and unable to cope with a "normal" activity level.
I spent two weeks in Austria earlier this month, visiting my daughter and son-in-law who have a new baby girl. I didn’t have to cook, drive or even do my own laundry. And although I was tired after we had been out sight seeing, I wasn’t terribly fatigued or weak. It has been a revealing comparison of activity level and energy.
I will spend the rest of the afternoon and evening resting, reading as long as my eyes cooperate and working at being gentle with myself. Pacing myself will help me manage my days. MS will decide how much mobility I have and I will need to adapt and adjust.
Last night I had a dream that I was in a wheelchair. I was passing through a hospital setting and when questioned I said I was not a patient; just visiting. Leaving, I took an elevator and went alone into the street on my way to a better destination.
