One of the questions I deal with frequently is why, if I can do things like blog, I can’t work. The answer is that people confuse ability with stamina, or can’t understand that there are varying levels of ability.
The Disability benefits system is set up to deal with concepts like "I cannot type ever again because my right hand is paralyzed". The boxes say Yes/No, there’s no option for "sometimes" or "badly".
I can type about 3 pages before my muscles start to protest and I have to stop using my hand for at least an hour or however long it takes until the pain goes away. This is enough to generate a blog post or a few e-mails, but is not good enough to work in an office, where I would have to continue typing until the muscles fail entirely and the hand becomes useless for the rest of the day; I’m not going to keep an office job if I can only work a few minutes out of every hour.
ADA says I’m entitled to a job that I can do comparably to a healthy person with "reasonable accommodation", but it doesn’t entitle me to a job where I could produce only a fraction of what a healthy person could do. At one point, I was able to use the computer for 5 minutes or less each hour before my symptoms got worse. I saw that I spent 55 minutes of each hour lying down in a dark room until I could sit up for another 5 minutes; other people allowed their imaginations to fill in the blanks that if they saw group posts from me at 12, 1, 2, 3, 4.... that meant that I was online continuously for hours on end. In fact, it took me 12 hours to accomplish what a healthy person would do in one hour. There was simply no way for me to achieve production comparable to a healthy person at that stage of the illness.
Then there’s the question of the spectrum of ability. I earn my living as a proofreader. That means being able to spot when there’s a period missing, or to think clearly enough to recognize a word is missing (or, conversely, that a word is repeated). Skimming e-mails is a whole ‘nother matter entirely: I’m not going to get fired for not catching a mistake. How many people read their personal e-mails first thing in the morning before their eyes are completely open, or late at night when they’re too tired to do anything else? I’m no different; when I’m not alert enough to work, I can still function well enough to flip through a bunch of e-mails that don’t require a lot of concentration.
I’m a 100-word-per-minute touch typist who used to test at 99.99% accuracy. That means that I can close my eyes when they’re burning (as they are right now) or my vision is blurry (a common CFS symptom which, obviously, prevents me from proofreading accurately or efficiently) and still produce a decent blog post or e-mail to a friend. I’m not using blogging or personal e-mails to avoid working, I’m doing them because I can’t work at the moment, though I still maintain enough residual function to do something that requires a much lower use of vision (or none at all).
Stamina (both physical and mental) is a big problem for CFS patients, and the thing that is probably least understood by non-patients. The SSDI judge decreed (in his infinite medical "expertise") that I could not have CFS because I had a normal amount of strength on a two-minute test. CFS alone does not cause your muscles to waste away; it causes them to fail from overuse. Imagine yourself in the weight room; you might be able to lift 300 pounds once, just to prove that you can, but you wouldn’t be able to do it twice, and you certainly wouldn’t be able to do it non-stop for 8 hours, because it’s too heavy for you. The same with CFS: those of us who use stretching and resistance exercises to avoid deconditioning will test normally on a short test, but a repeat test or an extended test will show we’re not able to continue as long as a healthy person, and scientists have even found a medical reason that explains why we’re still affected the day after exercise, our muscles really don’t rebound as quickly as healthy muscles. So, on the surface, it appears that we can do what normal people can do, but in reality, we can’t do as much of it. Not enough to use that ability to hold a job.
Another myth is that CFS patients are tired all the time. In fact, if you’re tired all the time, it means you’re pushing your limits. Once I learned my limits and made a conscious effort to stay within them, I started to feel pretty good, but I felt good because I wasn’t trying to do as much. The minute I say "hey, I feel good enough to do more", I’m going to exceed my limits and hit that wall of exhaustion that will make me feel tired for a few days. Dr. Ellen Goudsmit has written extensively on the fine art of pacing, where you work in short bursts and then rest. Pacing does not miraculously allow you to increase your total productivity, but it does prevent you from getting completely wiped out, so that overall you feel better because you’re continuously "topping off the tank" rather than stopping only because you’ve "run out of gas". There’s a daily limit on my expenditure of energy, and just like with your spending money, I can spend $20 in one transaction, or I can spend $5 each in four transactions, but I can’t spend $25 without going bankrupt; again, research has shown that patients can push themselves to increase their activity level for a few days, but eventually, like being overdrawn at the bank, it gets to be too much and further withdrawals are declined. Patients simply could not maintain the higher activity level beyond a few days without getting worse.
A few years ago, I felt good enough to accept a half-time office job. Three days later, I was back in bed, because half-time plus a commute was beyond my limit, no matter how excited I was about getting the job and how eager I was to get back to work. It took about a month to return to baseline, and again, this is not a "reasonable accommodation" under ADA ... you have to be able to work a predictable schedule, not "work when able" and then be allowed to take several weeks off because you’ve done too much and made yourself sicker.
Similarly, the Social Security Disability system is supposed to look at the whole picture, if you can work a full day on Monday, but then can’t work again till next Monday, you’re supposed to be deemed disabled, because you can’t work a 40-hour week. Unfortunately, there are some judges who can’t get their heads around the notion that the ability to do it once is not the same as the ability to do it every day; my judge focused in on the fact that I was able to go out for a couple hours to do something enjoyable (after days of resting so I’d have enough energy to go out, and with substantial after-effects for several days) and extrapolated that if I could go out for a couple hours, that meant I could work full-time; something my actual schedule for the week before and after did not support. He chose to look only at the snapshot of one moment in time that proved I was not entirely bedridden/homebound (and, in fact, the law does not require someone to be entirely bedridden to receive benefits – according to Reddick v. Chater, if you have to take off as little as one day a week to rest, and can work the other four days, you qualify as "disabled"). Pointing out all the fallacies in my judge’s written decision would take hours: he misrepresents facts (he thinks I’m married, I think I’m not) and repeatedly relies on illogic to support his conclusions; inconvenient facts and testimony are simply not mentioned – although there was a VocRehab expert at every hearing, only one is ever mentioned, and he’s misquoted.
Like many CFS patients, I’m a Type A overachiever. It drives me batty to do nothing. If I can read e-mails for even just 5 minutes out of an hour, I’m going to do it, just because it makes me feel like I’m accomplishing something. But it doesn’t mean that I can work successfully. It means only that I can do a little light reading for 1/12 of my waking hours.
Which brings us to another myth, that CFS must be the same as depression because all patients do is sleep 20-24 hours a day. In the active stages of the virus, when you feel like you have the flu, you do sleep a lot because your body demands it. But the flu is not depression; there are all sorts of symptoms that differ, just as there are many divergent symptoms between CFS and depression. In fact, it’s often just as likely that the patient suffers from "tired and wired" – physically, you’re exhausted enough to collapse into bed, but once you get there, you can’t get to sleep. One of my doctors confused the notion of being in bed 12-15 hours with sleeping 12-15 hours at a stretch, and thought I was contradicting myself when I said that I only slept about 2 hours a night; in fact, I spent most of my time in bed looking for a position comfortable enough to get to sleep, and it’s typical of fibromyalgia to sleep only 1½ to 2 hours at a time, but he didn’t know enough about either disease to recognize that "in bed" and "asleep" are two very different things. I started making a point of going online when I was awake at 3 AM, just to be able to document that I was, in fact, awake; prior to that, when I had pressed the point that I’m in bed not sleeping, he’d given me some prattle about "sometimes when we think we are awake, we are really asleep", and the easiest way I could think of to prove that I really was awake and not just imagining things was to respond at 3:15 AM to something that a friend in Australia or England sent at 3:05 AM. Since she hadn’t written it yet when I first went to bed, it wasn’t something that I wrote before bedtime and scheduled AutoAOL to post in the middle of the night to make it look like I was awake; the only way for that response to go out at 3:15 AM was for me to have been awake ten minutes earlier when her e-mail came in. At that point, the proof was there that I was not sleeping, and how many nights a week I was not sleeping through the night, but the doctor refused to accept it. It didn’t fit into his misunderstanding of what CFS is.
However, having re-read some of those late-night e-mails when I was more clear-headed, it became apparent that my over-ambitious theory that if I was awake at 3 AM, I could work at 3 AM, was a misguided delusion of my driven personality ... if I had turned that slop in to an employer, it would not have been acceptable quality.
And that’s what it really comes down to: not whether you can go through the motions, or get to an office, but whether an employer will be happy with the quality and quantity of work that you’re producing. For me, the answer is No. I can work successfully 6-10 hours a week. When I try to push it to 12-15, I make myself sicker and the quality suffers enough that I lose clients.
And it shouldn’t be assumed that because I can blog or knit or go out for a while, that that proves that I could be working instead, because typically I do those things after realizing that I’m not able to work as a proofreader that day. With my eyes burning, I could neither see nor concentrate well enough to proofread, but it was a great day for going out to lunch and listening to music, neither of which requires me to see well enough to know whether there’s a period at the end of this sentence. So, it didn’t cost me any work time to go out for an hour or two, because I would not have been able to work successfully anyway.
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