I could be wrong. I could be humiliated any day now with a crushing relapse. I’ve had these experiences before where I thought my CFS was no more and then I just got crushed for weeks on end.
Despite this, I feel like my CFS is over.
What caused this turnaround? My CPAP machine, which I started using in early February. I’m getting about the same amount of sleep a night, I think, but with the CPAP, I’m getting benefit from my sleep. I don’t wake up with headaches from oxygen deprivation, etc.
I’m only getting about four hours of sleep a night (out of about nine hours spent a night in bed, I do understand that our perception of how much sleep we get is often wildly inaccurate), so I have to work on that by following the usual recommendations for good sleep hygiene.
I was greatly helped by this book, The Harvard Medical School’s Guide To A Good Night’s Sleep.
It pointed out important tips for good sleep hygiene such as no naps during the day, use bed only for sleeping or sex, don’t let the bed be a battleground, get up and read or watch TV if you can’t sleep, use sunglasses late at night when watching TV or looking at a computer monitor, go for a 30-minute walk first thing every morning to activate the circadian rhythm, etc.
I’m happy with my care at Kaiser. I did a couple of overnight sleep tests and they pinpointed my sleep apnea.
I went for three walks today of about 30 minutes each. And I feel good now.
I feel like I am inching closer and closer to a normal level of vitality.
I’m excited to see what I can achieve.
Before I started with my CPAP, I dragged through every day. My three hours of Alexander training was about all I could muster. Anything more than this was a bonus.
Now I rock a 30-minute walk every morning. Then do three hours of practice Alexander teaching and then lead into a productive afternoon of internet work and an evening of free writing.
I haven’t pushed my limits much. I live a conservative life. It’s frightening to extend myself and to feel the icy fingers of crushing fatigue. if this good spell keeps up, I might start taking more chances. I might extend myself more. Be more social. I find that being around people I like energizes me.
I’ve dropped about ten pounds over the past six months. I want to drop another ten.
I’m doing a little running. Just a block or two. Just experimenting with my capabilities.
To what do I attribute my turnaround?
I would say that 80% of the improvement has come from improving my sleep. The other 20% comes from Alexander Technique (I’ve learned to let go of thinking and use that was holding me back and to instead direct myself in a poised way), psycho-therapy (I’ve located things I was doing and thinking that were draining my energy and depressing me unnecessarily), and Igor Ledochowski’s Lifelong Success program.
Bob emails: “I’m no doctor, but could sleeping in a sleeping bag on a hard floor contribute in anyway to this poor quality sleep?
“Regarding he 10 pounds you have lost. Might this loss be attributed to the $15,000 leaving your wallet to pay for these Alexander Technique lessons?”
I agree with the following:
But what I find interesting and perhaps counterproductive is the reaction of many patients. The Wall Street Journal Health Blog has been closely following this story (see the links below) and the comments from patients on their posts are quite sobering. If I had a chronic debilitating illness which has no consistently effective treatment and a study showed a modest improvement from CBT and GET, I would be knocking at the door of the nearest CBT psychologist and calling a personal trainer. And I would be pretty happy that a study finally had a positive result. Instead, patient advocacy groups and many individual patients are quite upset. They assert that CFS is caused by a virus and they reject the study findings which they think suggests that CFS is a psychological condition. This is despite the fact that the authors of the study explicitly state that “the effectiveness of behavioural treatments does not imply that the condition is psychological in nature.”
I have two reactions to this criticism from patients. The first is, why have an agenda about something under investigation? Why prefer that your disease is caused by a virus than by anything else? It either is caused by a virus or isn’t and our strongest desires can’t change the actual disease. In ten years we may find conclusive evidence that it is caused by a virus, or that it’s an auto-immune disease, or that it has genetic predispositions or that it’s a psychiatric condition. But until we know, why have a preference? This seems to me like having a strong wish about the orbit of Jupiter. I understand the patients’ desperation for an effective treatment, but the way to get there is to let the researchers seek the truth in an unbiased way, not to tell them what you expect them to find.
My second thought is, why the automatic rejection that CFS may have a psychological component? Again, if I were a patient, I would just want honest answers. If it turned out that my illness was psychological, knowing this would certainly help me focus on the right treatments more than pretending the opposite. Obviously, there is a stigma around psychiatric illness, but that stigma is wrong and should be fought against. People with bipolar disorder, for example, don’t choose their illness and can’t “snap out of it” through an act of will any more than people with pneumonia or diabetes. So I think it would be more constructive for CFS patient advocates to say something like “We don’t know what causes CFS, and whether or not it turns out to be a psychological disease, we didn’t choose it. We deserve compassion and treatment just as much as those suffering from other illnesses.” Denying that CFS could have a mental component only exacerbates the social stigma against psychiatric illness.
CFS patients deserve understanding and treatment regardless of the cause of their illness. The first step should be a willingness to investigate this mysterious condition without preconceptions.
Lancet study: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
New York Times article (in February): Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
Wall Street Journal Health Blog post (in February): This Study on Chronic-Fatigue Syndrome Has Nothing to Do With XMRV
Wall Street Journal Health Blog post (this week): Study Blowback Shows Controversy Over Chronic Fatigue Syndrome