Monday, September 25, 2006

Bootstrapping or Backsliding?

The September 21, 2006 issue of the Sacramento News & Review ( contains an essay "Strangled by my bootstraps: Confessions of a disabled conservative".

The author speaks from personal experience with one type of disability. I speak from personal experience with another.

Since losing my job 6½ years ago, I have repeatedly tried to get back into the work world. And, invariably, wound up bootstrapping myself right back into bed.

My body is in extremely fragile balance – if I overdo, even slightly, my immune system becomes overwhelmed, can no longer keep the virus in check, and I wind up on the verge of hospitalization. That’s a far cry from someone with a physical disability who can improve their condition by obsessively rehabbing 12 hours a day, and then return to work full-time with some accommodations.

The paradox of CFS is that the more you do to try to help yourself, the sicker you get. Exercise can make you bedridden, and then there’s the side effects of the medications.

After years of pills that didn’t do what they were supposed to (sometimes having precisely the opposite effect), I finally got a sleeping pill that worked. For the year that I was on it, I was essentially bedridden by severe side effects. Finally getting the Stage 4 sleep required for healing did recharge my immune system, which resulted in 6 months of a 101 fever, and intolerable pain that made me pray for death. Thank God, I passed out regularly, so I occasionally had some relief from the pain. Can you imagine trying to work with a fever frying your brain and pain that goes well beyond a mere "distraction"? I tried it. The results weren’t pretty.

That wasn’t a "lost weekend", it was an entire year of my life lost in the fog.

I did feel better after the fever broke, but that’s "better" like having only a migraine after having both a migraine and four broken ribs. I still had a lot of problems. Still do. Just yesterday, a Central Nervous System dysfunction caused me to lose my balance while walking. I instinctively grabbed for the archway support so I wouldn’t fall, and wound up with my full weight torquing my shoulder (which already has bursitis) backward. The pain woke me up every time I moved, and the shoulder is now locked (again, though hopefully not for a whole year this time). Several times in thepast 24 hours, I’ve nearly passed out from the pain of the damaged shoulder combined with the spine that twisted as I went down and the hip that hit as I landed. Oh, yeah, and just the basic level of pain I live with every day.

Some of the disabled "need" government assistance because they cannot work at all, or because the costs of functioning are more than they can reasonably earn (even at minimum wage, 24/7 caregivers run $60,000/year ... not counting employer-paid taxes and benefits).

Like most CFS patients who were overachievers, I would give anything to go back to work, but it’s just not in the cards. There’s no effective cure, not even an effective treatment, to get us back to work. Only people who don’t understand how something with such a minimizing name could be so disabling that we claim we can’t work even a little.

Some days, "higher expectations" means achieving both bathroom and food.

There is a theory that CFS patients are encouraged to enjoy "the sick role" by friends and family who help out, and by receiving disability benefits, and therefore, they don’t get better. If that’s true, then those like me, who have received precious little help (usually by paying friends to do urgent chores) and NO disability benefits, should have all the incentive in the world to get back to work ASAP.

In fact, the only reason someone would choose to live below the poverty level instead of earning $50,000 a year is because they don’t have a choice. Because every time they go back to work, they become bedridden again, and have finally learned that there’s no way they can stay healthy enough to manage a job.


See also "You Should Get A Job", several posts back.....