Although I've been accepting of the fact that I have a disabling condition for many years, the new information that 100% of disabled CFS patients have cardiac insufficiency, http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm, has changed my view on some things.
For example, for years I've bought into the notion that, disabled or not, I "have to" do my own housecleaning, as difficult as that might be, because it would prove to people that I'm not Just Lazy, or "would rather stitch than clean". Well, now that I know that it might kill me to do heavy cleaning, I'm more willing to accept that a cleaning lady is a life-or-death issue, not a "luxury". I'm going to have someone come in a couple times a month, whether the place "needs it" or not. It's worth $100 a month to not drop dead while cleaning. It wasn't worth the expense to have more stitching time, nor to avoid spending a couple days in bed after a cleaning binge, but now we're talking about preserving life. (Of course, the question is, whether the government, which insists we must preserve life, will consider it worthwhile to pay someone to clean to preserve my life, or whether they're still going to think that I could do it if I tried.)
The cardiac insufficiency research explains a lot of the problems I've been having: the fainting, the dizziness, the inability to concentrate as well sitting as I do lying down (less blood flow to the brain), the shortness of breath, the difficulty getting up the front stairs, and, oh, yeah, the fatigue. The fatigue could be explained by the "severe sleep disturbance", but the feeling that I wasn't getting enough oxygen, which often came upon me when I was out walking -- I couldn't figure out how that related to not sleeping well. Now I know. It doesn't, except in the sense that the sleep problem and the heart problem are both symptoms of the same ailment.
On the subject of sleep disturbance, they've been treating me with sleeping pills. They put me to sleep -- well, most nights -- but I wake up groggy and it's pointless to try to work before noon.
A couple months ago, I went to a lecture by www.DrRodger.com and found out about 5HTP. Taken with vitamins and 700 mg of magnesium, it builds serotonin levels. Dr. Rodger's theory was that the SSRI anti-depressants the quacks were giving me, instead of the sleeping pills I kept requesting, weren't working because I didn't have enough serotonin to be reuptook. From the description of my sleep patterns, Dr. Rodger says they should have known I had a serotonin deficiency. I've started taking 200-250 mg of 5HTP at bedtime, and most nights have been sleeping 6-7 hours, naturally, a vast improvement over some of the sleeping pills which
(1) didn't put me to sleep at all,
(2) didn't put me to sleep half the time,
(3) got me 3-5 hours of sleep, and left me confused part or all of the next day OR
(4) gave me a full 8 hours of sleep, at the cost of having to stay horizontal till noon or risk cracking my skull when I blacked out while sitting or standing.
With the 5HTP, I still need a few hours to wake up fully, but I'm nowhere near as brain-dead the next morning. I can actually do some work before noon -- slowly, but competently. :) I find it makes more sense to stitch in the morning and leave the paid work till afternoon when I'm fully awake ... not going to lose any clients if I make a mistake stitching. But that's still a vast improvement over 2003, when I couldn't do either.
God bless Dr. Rodger and Dr. Cheney. One's given me my life back, and the other has given me the information to live a normal lifespan.