It hasn't been an easy last few weeks. First, a month ago, my building put up a memo in the hallway announcing that there is repair work to be done in the basement level and that level will be closed of from 9am - 5pm every day from Mon through Saturday. Now, for those of you who are not aware, the only way I can exit and enter the building is through the ramp at the basement level. So, I postponed every doctors' appointment I had, as well as a lunch date with my friend Judy. Then, a snowstorm came and I guess the building staff was so busy with snow duties that the basement work had to be pushed back a bit. There was a memo that the basement would be closed down another week. Furthermore, we were having trouble with the heating system in the building, and everybody in the building was complaining our apartments were freezing and we were all walking around with coats, sweats, and even hats and scarves inside our own apartments. I even put a towel over Chelsea's wicker tent because she was uncomfortable even with her natural fur coat. I learned a few days later that we had a busted pipe, which had to be repaired before the basement work could be completed. So, not only could I not leave the building for appointments, but I didn't even have the option to go to hang out someplace warm -- like Panera or Starbucks. We had some of the coldest days on record [close to 0 degrees] and I was stuck in a freezing apartment, with no way out to a warm place to hang out for relief.
Add to that another complication: my portable shower unit. My friend Louise helped by making a set of phone calls to the distributor of the Fawssit portable shower unit, to get a new hose to replace the old one which had split. For those who have not been following me all these years, my wheelchair doesn't fit in my bathroom, and I haven't been in the bathroom for about five years. So I have a portable shower unit called a "Fawssit" which hooks up to the kitchen sink [for outflow] and the bathroom toilet [for backflow of dirty bath water]. The people at Fawssit are not easy to reach, because voice mail picks up, which means that my relay operator has to leave a message and they have to call back and possibly get impatient when my aide has to relate what I communicate in writing, which leads to much frustration. It was much easier to explain it all to Louise and have her field the voice mails and the callbacks. So finally we got it together with my credit card and the part came - $90 later charged to my card. Since the Fawssit is on loan from the ALS Association, it is my responsibility to return it in working order, and the maintenance is up to me. So, the new hose is a little different from the old one and requires an adjustment to the kitchen sink. The aides are a little reticent about asking the super and assistant super to come do service in my apartment while they are so busy with snow duties and basement repair. So when my hair got too gross for myself to tolerate, before they closed the basement [which was before I received the new part], I went to the salon for a wash and blow-dry
The amazing thing about all of this is that, in my previous life, I was obsessed with showering at least once a day [more in summer], and washing my hair AT LEAST every two days. If you told me I would get to wash my hair and take a shower once a week, I would have said "shoot me now, please". Every time anyone calls me "inspiring", I want to laugh, because sometimes it's not such a good idea to know what lies ahead, because you think "I can't handle that". But you get there, and do what you have to do. You rise to every occasion because you have to. You have no other choice. I don't have the resources to remodel my apartment, so I deal with personal hygiene as best as I can. I joke often that it's very medieval, but it is what it is. For a long time, I was afraid to tell anyone about this, because I figured I would lose all my visitors and friends, who would think of me as "nasty" or "disgusting". Now that I really only have one person who comes regularly to take me out, I can honestly say that I have lost all semblance of a social life anyway. People move on, and it apparently wasn't because of lack of traditional hygiene. If anyone had told me a few years ago that I would be stuck in my apartment xcept for doctor's appointments and a monthly visitor, with an added surprise once every couple of months [either from another friend, family or a surprise cousin from out of town or a once-every-few-years old friend], I would have said "shoot me now please".
Coming up: Nutrition course and HRA home care recertification [again!], more to look forward to.
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