Two days ago, feeling cabin fever and needing a few craft items, I decided to treat myself to a shopping excursion – just one store.
I spent yesterday on the couch, feeling like I’d been hit by a truck. I never did manage to get the trash taken out for today’s pickup, though I did manage a long soak in a hot bath for my aching muscles.
I woke up this morning feeling less like I’d been hit by a truck, but still feeling like I’d been hit by a small car.
It’s called "post-exertional malaise" or "exercise intolerance" and is one of the hallmark symptoms of CFS. Unlike a simple chronic case of fatigue, the true CFS patient knows that any venture from home will have after-effects lasting a minimum of 24 hours. This is a major impediment to employment: they want you there every day, not just Monday/Wednesday/Friday (and feeling like crap on the days you’re not working). For those of us with worse symptoms, we might only be able to get out Monday/Thursday, and spend the other 5 days in bed. Who does the housework when working two days a week sends you to bed the other five? Obviously, not you, but you’re also not earning enough to hire someone to do it – the only agency where I was happy with the quality/quantity of work performed charges nearly $200 a visit.
The fact that a disabled person can occasionally get out to shop or see a movie does not mean they are not disabled. It’s what you can do on a regular basis that counts. If a shopping excursion lands you on the couch for a couple of days, that’s proof that you cannot go out to work on any sort of reliable basis that would be conducive to maintaining employment, but it’s not proof that you’re committing Disability fraud. The law is clear that there is no requirement that someone has to be totally bedridden in order to qualify for benefits. Unfortunately, it is a common misconception that someone who can do "something" "sometimes" is not really disabled and should be working instead of applying for benefits.
The rules for determining eligibility for Disability benefits include consideration of earnings for those who are able to work part-time. Someone who is only able to work two days a week and has to rest the other five days would have to be earning a very good hourly rate to be disqualified from benefits. However, back when I was looking for a "real job", I was repeatedly told that working part-time was a major fringe benefit to me, and therefore, I would be paid only half as much per hour as I’d been earning in the same job full-time ... i.e., I’d do half the work for a quarter of the pay, and also not getting paid vacation, paid holidays, paid sick time, health insurance, etc. Working half-time under those circumstances, I would actually get more money from Unemployment! And half-time was more than I could reliably manage; if I'd accepted a job doing half the work for a quarter of the pay, I would've been getting sicker every week until I once again lost my job for being too sick to do what I was paid to do.
So I set up my own business, which allows me to tax-deduct my health insurance, eliminates the exhausting commute (i.e., I can actually do a little something on days I’m not working, not just lay on the couch resting), and work lying down when required. And I’m still not earning the amount the law says would make me "self-supporting", which means that I’m still entitled to benefits even though I’m working.
Having CFS means that there’s no such word as "and" in your vocabulary. The word is "or". I could work on Monday OR I could go shopping; I couldn’t do both. It’s like having a $5 bill, you can buy the $3.99 dinner special OR you can buy the $2.99 ice cream sundae, but you’ll bankrupt yourself if you decide that both items, individually, are under $5 and therefore you can have dinner AND dessert. I know that if I’ve gone shopping, I probably won’t feel up to working when I get home, and it’ll be several days before I feel up to doing any sort of housework, so I have to schedule my shopping trips when I have less work and can afford a day or two off.
Researchers have found objective biological proof that the CFS body has an abnormal reaction to physical activity. It’s not just laziness; weird things happen in the muscles, and it takes at least 24 hours for those chemicals to dissipate.
It’s tempting to think that if you cannot see someone’s disability, they are not actually disabled, but there are a lot of health conditions that can’t be seen with the naked eye. You can’t see in someone’s face if they are HIV positive, have a heart condition, or severe asthma, or uncontrollable epilepsy.
For the record, I do not have a disabled parking permit because I am medically prohibited from getting a driver’s license due to fainting spells. If I absolutely must go out on a day when I’m not feeling well, I have whoever is driving me drop me at the door. But for the most part, if I’m not feeling well, you won’t be able to see the extent of my disability, because I’m not going to risk leaving the house and collapsing in the street; there is risk of injury every time I pass out from being upright too long.
It's the things you don't see, because I'm not well enough to go out, that make me disabled, not the good days when I think I can manage a quick trip to the store.
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