Wednesday, June 8, 2011

Does it count if you're accomplishing things while in bed?

Doctor – and patient – Devin Starlanyl MD notes that it's remarkable how much patients accomplish despite their illness.  "The fact that you function at all with fibromyalgia is often a miracle."  And it's true.  So many of us were Type A's when we were healthy that the idea of doing nothing all day is foreign to us.
Because we are not able to commute to someone else's office, Vocational Rehabilitation generally wants nothing doing with us. 
Flat on my back, I started two businesses, one of which is still up and running today. 
The other was a website concocted in partnership with a disabled friend.  At the time, I had blinding headaches and couldn't sit up for more than a few minutes without passing out.  She did all the coding and website design, and I wrote articles.  Scads of articles.  Lying down, lights out, eyes closed, touch-typing on a laptop computer.  At some point I'd feel enough better to pry open one eye for a minute to proofread, and send the articles to her to post on the website.
Since I couldn't look at the computer screen for long, they weren't well-researched enough to be sold to a magazine.  They were strictly based on my own experience and expertise.
Small problem, both partners being disabled, we didn't have enough money to advertise the website, so after all the work we'd put into it, we weren't able to generate enough interest to make it a financial success.
Yet, so many people couldn't make the connection that what I was doing for our own website was not proof that I could work for pay – I got plenty of accusations "if you can sit at a computer at home, why can't you sit at a computer in an office?"  Ummmmm, because I'm not sitting.  No office is going to give me a bed.  I'd previously fought – and lost – the battle of keeping the fluorescent light fixture over my desk dark to minimize my headaches; ADA be damned, it "looked sloppy, like maintenance isn't doing their job".  Just like a bed with laptop would probably be a reasonable ADA accommodation, but no new employer is going to give it to me without a long legal battle because of the perception that someone who's lying down isn't working very hard.  Anyway, you have to get hired in order to demand ADA accommodations, and I was too sick to make a good impression in an interview, so I wasn't getting hired.  Interviewers saw symptoms and asked "honestly, can you do the job?" and, honestly, I couldn't say Yes.
But we have plenty of activists around the world who are making a difference from their beds.  We can't get out to do in-person demonstrations like the ACT UP people did, but we can write letters and blogs, we can run websites, we can make phone calls, we can organize others to write and call...
Some years ago, I had a light-sensitive headache and had to lie down in a dark room.  A fellow activist who was also spending the day in bed phoned to cheer me up.  He made a difference in someone's life even though neither of us could leave our bed at that moment.
OK, the dishes aren't done.  Breakfast was a Ritz Crackerfuls because the medication I took at bedtime left me too sluggish to get up to fix the omelette I had planned.  Laundry is looking like it's going to get pushed back another day due to the medication-induced torpor.  And I definitely don't feel up to chasing down the cat and wrestling her for a much-needed flea dip.  But because I slept well thanks to the pills, I've been pretty productive today ... despite having not even gotten out of bed to use the bathroom yet, I've made a couple of phone calls, sent several e-mails, advised a couple of fellow patients, posted some information to both this blog and the CFS Facts Facebook page, pre-written a Bloggerama Day blog post as well as this one, downloaded a podcast.  All without leaving the bed.  And compared to how I felt 10 years ago when I couldn't even sit up, thanks to the pills I woke up today feeling rested, human, as close to "normal" as I'm likely ever going to get.
But then I read Facebook and realize how much of life passes me by.  Friends who think nothing of planning three things per day for both days of the weekend ... I haven't been able to plan both days of a weekend since 1987, because I needed to allot one of them for resting on the couch.  Friends who are going to do some gardening in the morning and do something else in the afternoon ... when I do far less gardening than she will (because my yard is postage-stamp-sized – she has just one flower bed larger than my entire yard) I'll be in bed for days, not running off after a quick shower to do something else physical for the rest of the day.
It's been so long since I was normal, that I've forgotten what normal is like.  As I was sliding into this relapse in early 2000, I argued with a (wiser) friend that I couldn't be sick, I'd recently gone to Target.  She asked what else I did that day.  Ummmmm, to be brutally honest, I came home from Target, collapsed, and had flulike symptoms for weeks afterward.  She pointed out the incredibly obvious, that I'd been complaining about "the flu" for six months, the flu does not last for months, smacked me upside the head that I was in denial about relapsing.  Just as I was starting to feel better, I spent a week visiting a friend, and again, came home with flulike symptoms, plus carrying luggage left my hand/arm muscles weakened.
I do as much as I can during the day, a list which sounds pretty impressive to my fellow patients, but the reality is, if someone were paying me to work, the daily total output would fall below expected productivity.  Factor in the number of days I'm too sick to work and I'd soon lose the job.

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