So, they’ve finally gone and stuck a name on this illness of mine– Chronic Fatigue Syndrome (CFS). I’ve got mixed feelings about this. I had still been hoping it would be uncovered as some sort of malady that they could just give me a pill for, and ta-dah, suddenly I’d be better and be able to plan my life again. Now there’s no end in sight, and no more certainty. On the other hand, at least it’s not something life-threatening and hopefully not life-destroying… though at the moment I feel like my career aspirations are being slashed with a box cutter thanks to this. How can I do international development work if I can’t travel to tough places? How can I do a PhD if I can’t concentrate as well as I could before and can’t work a bajillion hours a week?
But when you try to find out more information about CFS, that’s when it gets really depressing… you uncover all kinds of horror stories, message boards filled with desperation, and blog posts that err on the conspiratorial. People who’ve had to stop working, people who need full-time care. It’s a sinkhole of suffering. Part of me doesn’t even want to identify with all of this–I think I am still not really accepting the title. I tried saying the sentence ‘I have chronic fatigue syndrome’, and it sounded like a lie, as absurd as saying ‘I am BFFs with Beyonce’.
And then there’s just the lack of clear information on what to do. I’ve been referred for Graded Exercise Therapy… some studies have shown some benefit, other studies have shown it can make CFS worse. And part of me feels like all the exercise I did last year exacerbated this. I had been going to doctors since May last year saying I was tired, and they just kept telling me to diet very restrictively and exercise all the time and lose weight. The harder I tried to do the right thing and the more weight I lost, the worse the fatigue became. When I went back to the doctors to say the fatigue was worse, they told me to lose more weight to fix it. It was only when things got really bad in November and I changed doctor that this line finally stopped being thrown at me. But the specialist who confirmed the CFS diagnosis this week also told me to lose weight–it’s exasperating. I don’t want to be huge. I have wanted to lose weight my whole life. But because of the PCOS, the only way the weight comes off is crazy amounts of exercise. Which seemed to get me into this CFS hole. So it just seems like a Catch 22. Then doctors recommend things like Optislim… well I have to say that living off an 800 calorie a day liquid diet doesn’t seem appealing right now when I already have no energy.
And as I deny, deny, deny in my mind that this is going to be an ongoing problem, my body keeps slapping me with cold hard reality. For example, last night I went out for dinner with friends who were passing through town for one night only, and are about to head off overseas. Even after resting from my short work day, I only lasted until 9.30pm. And perching on the hipster barstool made my legs go to jelly. Then today, I felt really tired, dizzy and had aches and pains all in my back from perching on that barstool without any lumbar support for just a couple of hours. So while I can’t bring myself to say it out loud, all signs point to chronic fatigue syndrome, and there isn’t going to be a magic fix. Which is a very hard pill to swallow.