Bootstrapping or Backsliding?

The September 21, 2006 issue of the Sacramento News & Review (www.newsreview.com) 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.....

Another doctor spreads false information

One of the morning news shows had an "expert" on to talk about how fatigue leads to weight gain.

The doctor leapt to the conclusion that anyone who gains weight while they are not sleeping well is amusing themselves during the sleepless nights by eating.

At the point that I gained 20 lb in one year, my house did not have central heat.  This being California, it also does not have insulation in the walls, so in winter, it can get down to 50 degrees overnight; even colder in the kitchen which has doors and windows that allow heat to escape.  Believe me, there is no food that is worth getting out of my nice warm bed at 3 AM to walk into a chilly kitchen and shiver for. 

One of my doctors didn't ask if I did it, he simply announced that I had to stop eating in the middle of the night.  In fact, in the last 6 weeks that I was working, I ate LESS than normal, because after working a full day, I had no energy left to fix dinner.  I'd simply collapse on the couch and stay there till I had to leave for work (which meant no breakfast, either).

These doctors also assume that you would only gain weight if you're not exercising.  In the time frame that I gained 20 lb in one year, I was walking at least 4 miles a day -- same exercise routine I'd had before.

In fact, it's been documented time and again by CFS researchers that the CFS causes changes in metabolism which lead to weight gain.  It has nothing to do with what you eat or how you exercise.  

If my weight gain were related to exercise levels, then I should have ballooned when I got too sick to walk to work and started taking the bus, and again when I stopped working and went back to eating.  Instead, my weight was about the same in May 1999, when the weight gain was first noticed, as it was in July 2000, and in November 2000, and in September 2001.  The only noticeable jump in that two-year period was when I gained 4 lb in one month while taking Synthroid (which would normally cause weight loss).  If that's not an indication that my hormones went wacko and caused the opposite of the normal reaction, I don't know what is. 

Any doctor who assumes everyone "eats out of boredom" needs to explain to me why, when I was home all day, every day, and bored out of my skull, my weight didn't budge.

I lost 30 lb in the year that I was on the sleeping pill that worked consistently.  And gained it all back in a couple months after stopping that pill and going back to my prior routine of being awake most of the night.  Since I was basically bedridden by the side effects of the sleeping pill, you can't say I lost weight because I exercised and gained weight because I didn't.  Quite the opposite -- I lost weight while unable to exercise, and gained 30 lb in a matter of weeks when I was again able to be up and about.

As much as doctors like to lay the blame for weight problems on the patient, and claim she's lying when she says that she does exercise and doesn't eat to excess, the fact is, I have seen it for myself, that the key to my weight is sleep -- not food.  When I go into relapse and the quality of my sleep is poor, I gain weight without changing my eating habits (or while eating less because I'm too exhausted to shop or cook).  When I go into remission, the weight drops off even if I'm eating more because I'm feeling well enough to shop and cook again.

Cortisol is a hormone related to sleep.  Cortisol is a hormone related to weight.  The link has been proven repeatedly, including in research centers where the patients had no access to food at 3 AM, so couldn't have been munching their nights away.  What is so difficult for these doctors to understand about that?

I'm not saying there aren't people who spend their sleepless nights in front of the fridge.  I lived with one.  What I *am* saying is that there are many explanations for weight gain, and the doctors should not accuse the patient of overeating without getting the facts.

A good friend of mine was taking medications known to cause weight gain.  Her doctor continually bullied her to lost weight by eating less.  She wound up in the hospital, where it was determined that she was eating almost nothing, surviving mostly on ice water, trying to appease the doctor demanding that she get down to a certain weight -- a weight that was impossible to reach because of the medication she was on, and not because she was eating far too much.  He never asked her to keep a food diary, he just assumed that the only reason anyone would be overweight is because they overeat, and at every visit snarked at her "it's not working, eat even less", without finding out how much she was eating in the first place. 

Doctors need to learn to listen to the patients and not ignore them.  With so many things, there are easy explanations for symptoms and there are less obvious explanations.  Leaping to the conclusion that someone is overweight because they eat too much may be correct in 90% of cases.  But then there are the 10% like my friend with her medication side effects, and me with my sleep-related cortisol imbalance, who gain weight even on fewer than 1000 calories a day; telling someone like that to cut back their food intake substantially can cause more problems.

Nationwide Call to Action

<<FM-CFS Canada, Canadian lawyers, and law students are reviewing FM & ME/CFS cases in Canada.  We're observing what does and doesn't work, patterns,
judge histories, and more.  We're doing this strategic review so your lawyer
doesn't have to; so each lawyer doesn't have to reinvent the wheel.  It's
free.>>

According to my lawyer (who is pretty well connected), no one in the US is doing anything similar.

We each need to put out some feelers in our own communities to get some qualified volunteers to do this, so that we can have a nationwide database.

Of course, I'm personally most interested in the judge histories, since documentation and statistics proving that my judge has never approved benefits for anyone under age 55 for any reason would not only give me one more ground for appeal, but also increase the possibility of having him removed from the bench for prejudice, thus benefitting hundreds of other applicants each year who have expert testimony that they are unable to work, and the judge ignoring anything other than your age in making his decision.

The Patient Strikes Back

This morning I faxed in my Disability benefit reassessment paperwork. Under a negotiated settlement with the State of California insurance commissioner, and both individual and mutual settlements with all 50 states, UNUM is required to reassess all CFS/fibromyalgia claims which were previously denied.

In my case, the initial claim was not denied because my diagnosis was CFS, but because the doctor’s written report giving the diagnosis and findings was typed on the doctor’s letterhead and not on the UNUM form. I have it on good authority from several insurance lawyers that this is bad faith.

They had my information handwritten on their forms, and a detailed typed report from the doctor giving far more information than would have fit on their form. Clearly, all the information they requested was there, it was the form in which it was given to them that was objectionable.

Since they required me to sign a statement that I am aware of the penalties for insurance fraud, I sent them a statement that I require them to sign stating that they are aware of the penalties for bad faith, and acknowledging that they have already paid substantial judgments, verdicts and settlements for doing exactly the same thing to other policyholders.  I think I will send this statement to them to sign every time they ask me to sign a statement saying that I'm aware of the penalties for fraud. 

I also sent them a copy of the negotiated settlement so that they know that I know my legal rights and will think twice about turning me down again.

In fact, their own doctor, whom they expected to certify that I was fully capable of returning to work, started off his examination by commenting that he couldn’t find what I had been prescribed by the rheumatologists for pain. I assured him that he didn’t see it in the medical records because they had not prescribed anything for pain, stubbornly insisting that the anti-depressants (which didn’t help in the least) would take care of the pain. His assessment was that their refusal to prescribe sleeping pills and pain pills, instead of anti-depressants which made me sicker, had resulted in my deteriorating too far to ever fully recuperate. Instead of telling UNUM that I could return to work immediately, he reported back that the best we could ever hope for was to eventually return half-time, but at the time, I wasn’t even up to that much.

Iatrogenic (doctor-caused) problems are the third leading cause of death in the US.  Thankfully, in my case, they didn't manage to kill me -- I'm too tough for that -- but they did cause me lifelong problems by insisting on treating me for depression I don't have, while ignoring my heartfelt pleas for sleeping pills and pain pills. 

If I'd gotten the sleeping pills early on, I might have recovered and gone back to work full-time, with only slightly more problems than I'd had from 1988-1999.  Instead, I basically went without sleep for 4 years until I got into the sleeping pill clinical trial.  Although it won't show up on a blood test (which is why they couldn't find anything), there's now physical damage caused by the lack of recuperative sleep, which means I'll never work full-time again, and will probably always have chronic pain due to physical changes to the central nervous system caused by unrelieved pain.

Since this is the opinion of UNUM's own doctor, I make sure to remind them of it on a regular basis -- the problem is not that I don't want to work, but that a series of doctors prescribed the wrong things, even when I told them what the right thing was.  Unfortunately, I couldn't turn back the clock and get to the right doctor before the damage was done.  I thought I was going to the best doctors, who advertised "innovative treatment" and their reputation as a research facility.  Little did I know that they only do research and innovative treatment into those things that will get them worldwide headlines; their history with treating chronic systemic illnesses is abysmal because they are 20 years behind the times on their knowledge of those things they aren't researching.