Friday, August 10, 2007

Yes, we know, the CFS Facts website is down. WebDiva has no internet access at all at the moment, but the site will be back, whether on her servers or via remote hosting. Please be patient.

Thursday, August 9, 2007

Some Hard Truths

I’ve been criticized by people who only know me online that "if you can type group posts, you can work". It’s what they don’t see – that due to lightheadedness, I frequently type lying down, not sitting at a desk – that’s the disability. Their computer is a desktop model in the kitchen, so it never crosses their mind that mine is a laptop sitting on the bed. When’s the last time you saw a bed in a professional workplace?

Nor can they see that, at times, I am only able to type for 5 minutes out of an hour and have to rest the other 55 minutes. And at times, the wrist tendinitis is so bad that I can’t type at all. These days, almost every job requires some computer use, so if I can only use my hands 5 minutes an hour, I’m closed out of non-secretarial jobs, too. And, obviously, I’m closed out of any sort of manual labor.

I’ve been criticized by people who only know me online that I should "just get my lazy ass off the couch and go back to work." They’ve never seen the symptoms that interviewers see. Like some of my former doctors, they have themselves convinced that if they don’t see it, it doesn’t exist. Through the monitor, I look as healthy as anyone else.

My absence from the Net for a couple hours may be because I'm working, but could just as likely be because I've collapsed and am fast asleep during business hours.  They assume that I'm doing the same things that they do when they're not online, and it doesn't cross their mind that I'm doing something they don't: having to sleep for 2 hours in the middle of the day because I exhausted myself doing a load of laundry, or simply because I spent 12 hours the night before tossing and turning, looking for a comfortable position, and got no sleep at all.

If they were the job interviewer, they’d quickly see the things that disqualify me from employment: the wrist braces that signal I shouldn't be typing, the asking for a trash can in case I throw up, the doubling-over with intense stomach cramps just before a two-hour bout of diarrhea, the fainting, the eyes closed due to blinding headache, the stumbling due to neurological defects, the dropping things due to muscle weakness, the inability to focus as dizziness gets the better of me, the struggle to find words. Blog posts can be edited and re-edited, with the assistance of others to provide the word I can’t come up with, whereas it’s painfully obvious in a "job thingie" that I can’t come up with the word, um, um, um, invest, no, interest, um, inter-something, um, whatchamacallit. "You mean, interview?" Uh, yeah, that’s the word. Cute once; not so amusing when it happens 6 or 10 times in an hour conversing with someone you’re trying to impress with your ability to charm clients and write letters.

What’s not apparent hanging out at home is that the commute to an office job kills me. At the end of my tenure, just getting to my desk (about a 15-minute commute) required an hour nap before I was able to do anything, and by the time I got home from work, I collapsed on the couch, completely unable to make it the extra 25 feet to the kitchen to get something to eat.

When I tried going back to work half-time a few years ago, by the second day I was already too exhausted to get dinner, and the third day I wasn’t even sure I was going to make it home before I collapsed, and spent the next 2 days in bed because I couldn’t make it further than the 4½ feet to the bathroom before my legs gave out. The second week, I made it to work one day. There was no third week; I couldn’t drag myself to the bus stop any more and they didn’t want me back after what they'd seen first-hand.

Part of my inner circle is someone who used to work for VocRehab, and whenever I suggest looking for a job, he ticks off a number of reasons why VocRehab won’t waste their time on me. As long as he keeps telling me that I’m impossible for even State VocRehab to place, I’m not going to waste precious energy (better spent keeping up the household chores and preparing healthy meals with fresh ingredients) going to their office for testing that will tell me what he’s already told me: that the things you can’t see over the internet make me unemployable.

For years, I got steadily worse because doctors refused to give me the pills I suggested, preferring to give me pills proven to be totally useless against my actual diagnosis. With proper medication, I’m slowly improving, but the experts say you shouldn’t try going back to work part-time until you are 70% functional most of the time; on my good days, I currently hover between 40-50%, and there are still things I can’t do (like bending down to get something from a lower file drawer without getting dizzy, or sitting up for a prolonged period without getting dizzy).  Maybe in 3-5 years I'll be approaching that 70% where I could work part-time without rapidly making myself much worse; maybe not.

If someone wants me to go back to work, they’re welcome to try to find a job that accommodates my limitations. I guarantee, they will not find an employer who is willing to offer what I need to work, because it’s far in excess of what ADA requires. Tell them you have a friend who is as impaired as late-stage cancer, advanced heart disease, an AIDS patient just before death, but really wants to work and that you want them to offer her a job, with a guarantee she will not be fired for falling asleep on the job, 100 sick days a year, no deadlines, and a dark room with a bed and a locking door for those times she needs to lie down immediately for several hours. Try not to take it personally when they laugh in your face.

I knew going into the job hunt that I was a tough sell in such a bad relapse, and after a lawyer I interviewed with told me that my necessary accommodations exceed ADA requirements (and gave me case citations so I could read it for myself), I finally accepted that I’d have to apply for Disability. Where three consecutive VocRehab experts have testified that I am not employable, and three consecutive times, the judge’s written decision has not mentioned that testimony because he wanted to reach the opposite result than the expert testimony.

Just like people who have NEVER seen me in person, only know me online, reach the conclusion that my photo looks perfectly healthy to them and therefore I should be working. They have no expertise in CFS (other than the firm conviction that CFS is the same thing as depression and no more disabling than simple end-of-day fatigue) and no training in VocRehab to back up their assertions that I’m readily employable, just "too lazy" to get a job.

As noted in the SacBee article I posted the other day, bullying and verbal abuse of the disabled is a hate crime in California. I’m sure I can find a lawyer willing to take the case when he hears how many nice houses are owned by the various culprits, guaranteeing that between their homes and their retirement funds, he’ll get paid well for his work; in fact, when I asked who might take such a case, the first name I was given was someone I know, who once asked my boss if I was date-able, which leads me to believe he’d be very willing to help me. Especially since I have full names and accurate locations for the worst offenders.  I hope it was worth it, when you have to explain to your husbands why your family has to move out of your house so it can become a board-and-care for CFS patients, and why your IRA/401k is now a charitable trust fund to provide for CFS patients.

Wednesday, August 8, 2007

The Grammar of CFS: "And" or "Or"

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.

Sunday, August 5, 2007


Thanks to Byron for passing along some topical humor.


Q .  What does HMO stand  for?
A ..  This  is actually a variation of the phrase, 
"HEY  MOE." 
Its  roots go back to a concept pioneered by Moe of the Three Stooges,  who discovered that a patient could be made to forget the pain in his foot if he was poked hard enough in the eye.
Q.  I just joined an  HMO  How difficult will it be to choose the doctor I want?
A ..  Just slightly more difficult than choosing your parents. 
Your  insurer will provide you with a book listing all the doctors in the  plan.  The doctors basically fall into two categories: those who are no longer accepting new patients, and those who will see you but are no longer participating in the plan.  But don't worry, the remaining doctor who is still in the plan and accepting new patients has an office just a half-day's drive away and a diploma from a third world country.
Q ..  Do all diagnostic procedures require pre-certification?
A ..  No ..  Only those you need .
Q ..  Can I get coverage for my preexisting conditions?
A ..  Certainly, as long as they don't require any treatment

Q ..  What happens if I want to try alternative forms of  medicine?
A ..  You'll need to find alternative forms of payment

Q .  My  pharmacy plan only covers generic drugs, but I need the name  brand.
  I tried the generic medication, but it gave me a stomach ache ..   What should I do?
A ..  Poke yourself in the eye.
Q ..  What if I'm away from home and I get sick?
A.  You really shouldn't do that.
Q ..  I think I need to see a specialist, but my doctor insists he can handle my  problem.
Can a general practitioner really perform a heart transplant right in his/her office?
A .  Hard  to say, but considering that all you're risking is the $20  co-payment, there's no harm in giving it a shot.

Q.  Will health care be different in the next decade?
A ..  No, but if you call right now, you might get an appointment by then.
   To  Your Good Health (because as you'll see, you'll need  it.)