My ex’s work schedule had him working on Saturdays. We lived in a tiny apartment (the whole place was the size of my aunt’s living room), therefore, it was best if I stayed out of his way while he was getting ready for work. That meant I couldn’t be in the bedroom, kitchen or bathroom, or anywhere along the path between them, where I’d be underfoot during his preparations, so I would retreat to the couch in the far corner of the apartment and knit until he left. When he came home Saturday night, I’d be on the couch knitting. Therefore, it was his perception that I had spent the whole day on the couch knitting and hadn’t done a thing all day.
The reality was, once he left for work, I’d wash his breakfast dishes (something he should’ve been able to see had been done), fix my own breakfast, clean the rest of the apartment, and cook a nice dinner from scratch (something that I know he knew had been done, since he sat down to eat it when he got home). But because he didn’t see me doing any of those things, it was his perception that he "did all the housework" and I did absolutely nothing. He saw the little things that he did (about every six months, he would swish a brush through the toilet and demand praise accordant with having single-handedly cleaned Buckingham Palace), but he never saw me doing the cleaning, therefore, I "obviously" wasn’t doing any.
The same perception-versus-reality exists with CFS. People see that you spend most of your day resting, but they never acknowledge the things you do when you’re not in bed. Someone who was truly "lazy" would not spend most of her good hours cleaning her house or spend all his good hours working for pay; they’d spend the good part of their day at the beach or the mall, having fun.
I had a doctor who was convinced that I was applying for Disability because I didn’t want to work, and this perception blinded (or rather "deafened") him to any reports that I was trying to work (e.g., I accepted an 8-hour research/writing project and it took me 3 weeks to finish because I could not understand the books that I had to read – after the second or third sentence, they could just as well have been printed in Russian).
His perception was that I didn’t want to work, when the reality was that I wanted very badly to work, but I simply could not do it – getting to the library to do research left me so exhausted that my eyes and brain wouldn’t focus on the book in front of me. It was the same experience that my roommate had after pulling a three-day all-nighter, so why should it be so unfathomable that physical fatigue would cause mental dysfunction? Moreover, when I was complaining that I had been sleeping 2 hours a night for months, why wouldn’t he recognize these symptoms of sleep deprivation? Perhaps he might have, if his mind hadn’t been clouded by the perception that women lack the work ethic men have, and therefore I was just looking for an excuse to stop working.
The reality is that most of the CFS patients I know continued to drag themselves into work, getting sicker by the day, until either they were told by their boss not to come in any more or became so sick that they couldn’t get out of bed without collapsing to the floor. That shoots down any assertion that the real problem is that patients are slackers. But, the perception is so ingrained that it’s hard for the reality to batter down the wall to peek through.
There’s also the notion that because there is no test specifically for CFS, that the symptoms are "medically unexplained" or that there is no test which shows any abnormalities. There are many tests which will be abnormal, but they are not the blood tests which are commonly performed: they are unusual or expensive high tech tests that are not part of the standard series performed by most general practitioners. There are 4000+ studies worldwide showing objective abnormalities, with obscure tests of immune function or brain scans or neurological testing. If someone comes in with the mumps and you give them a blood test for measles, that test will indicate they’re perfectly healthy, because it’s testing the wrong thing, and it’s the same with the basic blood tests done by most doctors – they aren’t testing for brain lesions or central nervous system dysfunction or NK cells – they test for diabetes (which I don’t have), lupus (which I don’t have), hypothyroid (which I don’t have)... Of course, they’re negative. It took years before anyone did any test that would reveal an infection/immune problem, and when I had it, it was described to me as "off the charts".
It doesn’t help that psychologists have exploited the name similarity between Chronic Fatigue Syndrome and the symptom of chronic fatigue and the psychological condition Fatigue Syndrome, and have persuaded the media that CFS and CF and FS are really all the same thing, and are all psychological. That may be the perception, but, in reality, CFS has a diagnostic code number that places it in the neurological category (which is logical, given its previous name of Myalgic Encephalomyelitis: inflammation of the brain) while FS has a diagnostic code number in the psychological classification.
Other doctors have the perception that CFS is another name for depression, one which avoids the stigma of mental illness. The reality is that CFS has many symptoms not present in depression, and test results for the two are vastly different, e.g., cortisol tests are out of whack in opposite directions. Someone who has true CFS (as opposed to a misdiagnosis) will have absolutely no benefit from anti-depressants. (In fact, most of them make me even sicker.) However, researchers have seen dramatic improvement with anti-viral drugs, which would have no effect on depression.
Unfortunately, anti-viral drugs, whether for AIDS or for CFS, are prohibitively expensive, costing tens of thousands of dollars a year. Ampligen, which was first tested on CFS patients in the 1980s, still is not FDA-approved, and, as an experimental medication, is not covered by health insurance. Very few patients are in a position to spend $20,000 a year for the rest of their life on Ampligen (when patients stopped taking it, they relapsed). For someone who contracts CFS at a relatively young age and has 50 years to live, that’s a million dollars out of their own pocket. For the average patient surviving on about $800 a month in Disability benefits, it might as well cost a million dollars a year.
Yet, assuming that it worked for me, enough to get me back to work full-time – I just saw a job comparable to the one I left advertised at $55,000. The government would easily get back in taxes more than the cost of providing a trial period of Ampligen to get me back on my feet so I could go back to work and start covering the cost myself. But, for all the arguments that disabled people should get off our lazy butts and go back to work, the government refuses to approve Ampligen for sale outside limited clinical trials, or to pay for therapies that would get millions of disabled people back to work. You’re expected to pull yourself up by your bootstraps, even if you cannot afford boots.
If you don’t, the perception is that you’re too lazy to work, rather than that you’re too poor to pay yourself for the therapy that might help.
Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."
4 comments:
Your condition sounds just like hypothyroidism. One blood test does not a diagnosis make. You can feel the symptoms for YEARS before it shows up in blood work. Keep getting tested. You need to have a different blood test--one for hashimotos antibodies. Go back to your doctor and ask for a full thyroid panel, including antibodies.
Even if that is completely normal, ask the doctor if s/he would consider, I repeat consider a trial of (just a trial!) of thyroid hormone. In the US it is called Eltroxin but the chemical name is levothyroxine or just thyroxine. A starter dose of 25 mcg working up to 50 mcg over time might make all the difference.
Keep well.
BTW you will know if you have a thyroid condition because you feel the cold and are constipated. The outer third of your eyebrows are also thin. Your nails are thin and break easily. Not everyone will have all the symptoms.
Kind regards
Thyroid Lady.
Yes, CFS has much in common with hypothyroidism and some people who are told that they have CFS recuperate quickly when given thyroid medication. But my TSH results have never been abnormal, and treatment with Synthroid did absolutely nothing to improve my symptoms.
My symptoms started with a severe virus, which is standard for Myalgic Encephalomyelitis (renamed CFS in 1988). Based on that, the doctors who have made the diagnosis have never had any doubt that I really have CFS.
But there are doctors who don't think CFS exists, or who think the only symptom is fatigue, and those are the problem because they are the source of misdiagnoses.
Yes, every CFS patient should be tested for thyroid, but not every CFS patient will have thyroid issues.
Isn't this the same doctor who refused to listen to you that you were not gaining weight from overeating but because CFS affects your metabolism?
For those who don't know the story, he wouldn't accept that Karen eats a very low calorie count and insisted that when she was insomniac at 3 AM she stood in front of the fridge eating everything in sight.
It was some years later that another doctor pinpointed the problem with Karen's morning vomiting (because he LISTENED and didn't assume he knew the problem and call her a liar when she contradicted him) was that she ate nothing for 12 hours and her stomach acid had nothing to work on but her stomach.
Even I know that the only thing Karen eats at 3 AM is that she'll sometimes get some warm milk or hot cocoa to try to put her to sleep because the kitchen is too cold to stand there for an hour eating ice cream.
CFS has symptoms in common with thyroid. It has symptoms in common with MS. It has symptoms in common with AIDS. It has symptoms in common with depression. But it is not any of these. It is something else entirely.
A good doctor - and Karen has seen specialists - knows how to separate it out from those others by the unique symptom pattern and the hallmark symptoms like post-exertional malaise.
A bad doctor - and Karen has seen several of those - thinks the only symptom is fatigue and doesn't know how to tell the difference with other similar looking conditions.
And then there are those who think that doctors are gods who are never wrong and that a patient who disagrees with the doctor is the one who must always be the problem. But Karen had her diagnosis from a specialist for 10 years and confirmed by another specialist when the idiot doctor refused to accept the CFS diagnosis because he had his own wrong ideas. All his attempts to cure her of other illnesses - the ones she doesn't have - failed, proving him repeatedly wrong. And her CFS diagnosis was then confirmed by more specialists who said that doctor was incompetent.
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