I wish it was all in my head

I wish Simon Wessely was right. I wish this illness really was just psychologically perpetuated. I wish that the more I pushed myself Monday to make cookies and candies for friends and family this Christmas, the more that constant icky, flu-like feeling would have receded into the background and I’d have seen how great it was to enjoy life again instead of making me too sick to make cookies and candies on Tuesday.

I wish Peter White was right and I could let go of my attachment to this bed. Get out of this stifling apartment and roam the streets of downtown like I used to. It’s so pretty this time of year with all the lights and evergreens. I wish that the more I had pushed myself yesterday to get out and do some errands -- go to the store and the post office like a normal person -- the more it would have made me forget I have a debilitating illness instead of leaving me weak, nauseous and listless today.

I wish Trudie Chalder was right. I wish that letting go of my aberrant illness beliefs last winter and taking the baby step of joining a writing class once a week at the church next door would have provided the courage to take even more classes and return to graduate school instead of making me crash so badly that I’m still trying to recover 10 months later.

Every time I have a good day, there’s always that little voice in my head that says maybe they’re right: this illness is just some construct I must break out of. I just need to push myself a bit and eventually I can get the life back that I let slip away with my weak will.

But after 11 years of wishing it was all in my head, of thinking that those silly rules about “energy envelopes” and “aggressive rest therapy” don’t apply to me because they just make me pay too much attention to what are normal somatic sensations. Of using all sorts of tricks to distract myself from that horrible pain and weariness so I can bull my way through using sheer force of will to do what I want. After all the stubborn, wanton disregard for whatever my body tells me (It’s normal to feel tired, right? But everybody else keeps going...), I end every year sicker than I was when I started it. My functional capacity decreases. I spend more time in bed (can that be possible?). I’m on more medication.

It’s just...I just so want them to be right.

Hang on

A few days ago I was reading the blog of a fellow Portlander with the title "Hanging Blog Syndrome." I immediately recognized the malady. Despite having my shiny new Macbook for almost a month now (thank you again, dear friends who donated it!), you can almost hear the creaking of this poor blog as it hangs forlornly in cyberspace.

My blogging is always rather meager when A. is here -- as is his productivity also. Two people sharing a 400sq foot studio for two and a half months without pause except for my doctors appointments or his trips to the store is not particularly conducive to introspective pursuits.

Neither is chronic illness blogging-friendly. Good days have been rare for a few years now, even if I always think they are close at hand. Instead there are horrible days and less horrible days. Most of the time my brain is cream of wheat and I'm too weak to sit up in bed, drag my fingers across a keyboard and input all the thoughts I've had during the hour upon hour of laying in bed. You have no idea how jealous I am of those of you who can blog every day or even every week. And even more jealous of those of you who get to read blogs regularly or interact incessantly on forums like the Phoenix Rising board (which I've grown fond of).

If I could write via mere thought, my hanging blog syndrome would be a thing of the past. The brevity and immediacy of Twitter has made composing my thoughts less onerous than blogging, though admittedly more banal. I suspect you will continue to find me Twittering more than I blog.

But A. is about to return home to the UK. Bad for cuddles and companionship, yet more promising for blogging, as is the recent return of my writing head. Like so many things, it's "use it or lose it" with writing. Blogging is one way I hang on.