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.
Labels: CFIDS/ME experience
posted by Michelle @ 9:18 AM
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YES. I am so furious that this stupid illness can't just listen to those so-called experts, who insist I'm only sick because I pay too much attention to my body, or because I'm not active enough, or any of that.
Because there's a really tempting fantasy that goes along with it: if I can just find the right mental attitude, I can get back to being the person I enjoy being. The one who is active, who does all kinds of things. The person who doesn't have to spend the day resting because of minor exertion.
I'd say that it's hardest on me this time of year, but I think I say that most times of the year. There is never a time when I want to be stuck in my bed, watching the world pass me by because it's all I can do to sit up at my computer for a couple of hours.
But this post really touched a nerve with me, because I've been missing out on the holiday activities I most enjoy because I've been too sick to be out of bed for long, and altogether too sick to do the shopping, baking, and crafting that are such an integral part of my enjoyment of this season.
Heck, I'm daunted to the point of discouragement about the notion of putting up a Christmas tree this year, because I just do *not* have the energy to do it, and can't count on having the energy to take it back down. *Sigh*
The question I always want to ask these people, because no one else does:
Not so long ago, we didn't know what caused polio, or multiple sclerosis, or cancer. So what makes ME/CFS different? Why does the fact that we don't know what causes it make you think it's not real?
Then, if XMRV turns out to be causal, I want to ask them if they intend to apologize.
Insanity is repeating the same experiment within the same perameters and expecting different results.
You try to force this it makes you sick...you keep trying...you are insane.
Step 1: Admit you are powerless your life is unmanageable.
Step 2: Came to believe that a power greater than you can restore you to sanity.
There are 10 more steps too.
Because there's a really tempting fantasy that goes along with it
Exactly. This post was just pure fantasy after getting frustrated by crashing so badly from trying to make cookies and candies for Christmas. I'll have that one good day, this fantasy pops up and out of desperation I listen, but it's as Faustian as it gets.
I think it's natural for people to look at something from the lens of their profession. It makes sense to me that psychologists would view this disease through a psychiatric framework. Where it gets disturbing is when they imprison a group of people (both literally and metaphorically) for their own financial gain, as they have with ME/CFS patients by taking money from insurance companies to keep patients from getting the care they need.
And, of course, the medical model which assumes "medically unexplained symptoms" are always psychogenic in origin is deeply flawed on so so so many levels.
When -- and I know I'm being very optimistic here -- XMRV turns out to be the cause, I want not only an apology. I want cash settlements and heads to roll. I want Medicine to seriously reconsider their "medically unexplained symptoms" = "pscyhogenic origin" model. I want justice.
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