Please also read the previous article Exercise and CFS: Experiences in a rehab hospital, for the complete picture.
9:00 am Wake up 9:30 am Breakfast, get dressed 10:00 am Gymnasium Doesn't sound much like a typical morning for somebody with severe CFS and fibromyalgia? It's mine, four mornings every week.
... Or at least, it was for a while. I wrote that article about six months after I first came out of Cedar Court. Cedar Court is a private rehabilitation hospital in Melbourne, Australia. It doesn't specialize in CFS or have a special CFS "program" but they do claim to understand the disease and be able to basically get you back to normal functioning if you try hard enough and do what they say.
I've been there five times now. The first time was just after a long period of being crashed to the point of being bedridden, and it helped me. I jumped from about 30% to about 55% on Jill Moss's Ability Scale. I was thrilled! This was the cure I had been looking for for years! I was jubilant. Strong enough to move out of home on my own for the first time. And I believed all the rehab specialists' opinions that if I kept going to the gym I'd keep improving.
There's a word for this thinking, and I think it's "naieve". Or it might be "over-optimistic". Or a combination of the two. Point is, it didn't quite work out that way.
I moved out of home, found the nearest gym and started diligently going there six mornings a week. I felt stupid lifting half kilo weights beside the muscly guys lifting my own bodyweight and more. I couldn't even work most of the machines because their lowest weight was more than I'd gotten up to on the Cedar Court machines. I went back to the physiso and we collaborated and designed a new program of stuff that I could manage to do at the gymnasium, like riding the recumbent bikes for 3-5 minutes, doing heel raises, and so on. I went there for about 3 months and my numbers - and heath - improved not one iota. It was pretty discouraging.
I think the fact was that while I was living by myself, I needed some of my energy for stuff like shopping and keeping house. I could no longer devote 99% of my energy to the struggle of getting stronger as I had done while I was in Cedar Court hospital and then later at home when my parents were supporting me in my rehabilitation efforts.
At the start of the next year I went back to Cedar Court for a "top up", thinking this might kick-start my recovery again. This is when I found out something very insidiously nasty about the Cedar Count program: While you are improving, the physios and OTs and rehabilitation specialists are 110% encouraging and just plain "there" for you. While you're stable or slipping backwards, they melt away and it's your fault for not trying hard enough, or for not wanting to get better, or for not being motivated, or for any number of other reasons. So they get the credit for all the good stuff and you get the blame for all the bad stuff.
I had one physiotherapist who, at the start of my first stay stay when I asked her about her treatment success and failure percentages, said that she could help every single patient who wanted to be helped. When I stopped improving on a later visit she sat me down very seriously and told me point-blank that I should "have a good think and examine my motivations for being here". I guess once I wasn't being helped anymore, I automatically fell into the "didn't want to be helped" category. I found incidents like this very upsetting and difficult to deal with.
But because I was deteriorating more and more, now down from a high of 55% to a low of under 20% on that same scale, I kept going back. Hoping each time that whatever flaw in me that they saw and I didn't see could be corrected and I could recover.
This continued for five visits, each visit becoming more useless and torturous than the last. The final straw came when, at the end of my last visit there, my rehabilitation consultant wrote a letter back to my treating doctor. Note that the rehab consultant had never seen or even asked to see any of my blood test results etc. He wrote: "There is no physiological [in-the-body] reason why Rebekah should not be functioning at a higher level". That was the last straw. Because he could not fix me, it was all in my head.
I gave up on Cedar Court that day. I'm never going back.
I think the assessment I wrote in the first article was true - my first Cedar Court trip caught me at a period where I was coming out of a prolonged crash and helped me to recover muscle strength/stamina which I had lost but had the capacity for. I don't think they ever touched my underlying CFS and other diseases, or actually did anything except rebuild muscle that had wasted while I was bedridden.
I'm still getting worse. I'm still doing my physio and occupational therapy because I still believe it'll keep my muscles as healthy and strong as the CFS will let them be. I still believe that there might be another time when it suddenly starts helping more, like it did during my first Cedar Court stay. But at the moment, it's not working. I guess it might be slowing my decline, but it just feels like hard, useless work.
On the other hand, it's all that I have.
