I’ve been having heartfelt discussions with a friend where we’ve joked "if it weren’t for bad luck, I’d have no luck at all". She’s had one bad thing after another happen in her life; I won’t bore you with the details, because they’re private and not important to this commentary. She’s just had another bit of really bad news. I don’t know how she stands it all.
And she doesn’t know how I stand it. To her, the worst possible fate – even worse than what she’s suffered through – is to have to spend so much time in bed. Like I used to be, she’s a go-go-go type of person. The idea of not being able to go out whenever and wherever she pleases, having to spend so much time resting instead of puttering around the house – she just shudders. It would drive her batty.
As bad as her life has been, she’s made it clear that she wouldn’t trade for mine, no way. (And, for the record, no thank you, I wouldn’t swap for her troubles, either.) She’ll keep her innumerable heartbreaks, as long as it means she can keep her health, too.
But those bouts of bronchitis growing up were good training. Stuck in bed for 6 weeks at a time, you learn patience. You figure out things you can do in bed: watch TV, listen to music, write letters, do needlework, read... And, let’s face it, with the Compleat Monty Python, the complete M*A*S*H, the complete Marx Brothers, I’m not likely to die of boredom. Die laughing, maybe.
Plus, it was a gradual process. The initial virus in 1987, I was only off work about a week, and I got back to 85% of normal. With each relapse, I got back to 85-90% of where I had been. It wasn’t like one day I was 100% and the next day I was 10%. More like, just before this relapse started and I went down to 10% over the course of a few months, I was regularly functioning at about 50% of where I’d been before I ever had the virus. For someone whose natural turbo-charged energy level allowed working 18-20 hours a day, a little over half of that still gave me the energy to hold down a full-time job: I just couldn’t do all the other things that I used to do (like hold second and third jobs, and do volunteer work, and do all the housework myself, and go on 20-mile hikes twice a month....)
Over the years, I had slowly jettisoned one thing after another. With each relapse, one more thing had to be taken off my plate. So, by the time this relapse started, I didn’t have to ditch my home business – that had disappeared a dozenyears earlier, per doctor’s orders. The only volunteer commitment I had left was a one hour meeting every couple months; I wasn’t on any committees or helping with the fundraising events, just letting the group pick my brain. I’d gotten rid of the live-in slob who required hours and hours of picking up after him, so my housework was down to one hour on Saturdays.
And that was the problem with this relapse. There was really nothing left to jettison when I started to feel bad. I was already down to the barest minimum of housework and my job, and I really couldn’t let either of them go because there was no one else to do the chores (cleaning agencies will not do laundry for insurance reasons – they don’t want to be on the hook if your washer floods or your dryer catches fire, and since I clean the bathroom and kitchen as I go, the laundry is what took most of the time on Saturdays) or to pay the bills if I quit my job. It was like telling someone who earns $1000 that the cheapest apartment is $1100; even if they forgo food and electricity, they’re still not going to be able to keep up.
After losing my job, my health took a big bounce. I felt pretty good after a few weeks rest – I actually felt better than I did before the relapse started. But after 5 minutes of yardwork, I felt awful. I rested a few more weeks, felt pretty good, and after a half-hour walk, I felt awful; the flu-like symptoms came back full-force. I rested a few more weeks, felt pretty good, and after a couple hours of volunteer work, I felt awful. Eventually it became apparent that I felt good because I was resting, but that any attempt to do anything brought back the symptoms. It no longer matched the criteria for having gotten Flu Strains A through Z in one winter; it was clearly the "exercise intolerance" that’s a hallmark of CFS (or Myalgic Encephalomyelitis, if you prefer the traditional name).
You learn to manage it. If feeling decent requires spending 21 hours a day resting and cramming the most important chores (and paid work) into the remaining 180 minutes, in short intervals interspersed with long rest periods, that’s a fact of life and you have to deal with it. You don’t have a choice.
Given a choice, my friend and I have both decided we’d rather keep our own set of troubles. I can’t imagine going through what she has, and she can’t imagine having to plan around a trip to WalMart sending her to bed for 2-3 days.
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