Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong
shadesong

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Like a tightrope in the mud

Yesterday's doctor was a nutritionist. So yesterday I sat down and said, basically, "This is the highly condensed version of the past four years of my life. In 2003, I was diagnosed with epilepsy. The first meds they put me on caused me to rapidly lose 50 pounds - the first 30 over the course of two months. I kept dropping weight even after the med change, and went down to 85 pounds before I could be stabilized. The meds that finally controlled my seizures caused me to put that all back on, and then some. In the interim, I was diagnosed with fibromyalgia as well, making it difficult to exercise sufficiently due to chronic pain and fatigue - and the extra weight makes it more difficult as well. I'm kinda screwed there. In addition to that, I have IBS, which has a high comorbidity with fibro. I have several conditions interdependent with each other, I'm on six medications (none of which are optional), and my body's reacting violently and unpredictably. To top it off, y'know the old joke 'What does a Jewish mother make for dinner? Reservations*'? In my case, totally true. So I never learned anything about nutrition, really, and some knowledge in that regard has become increasingly important. I spent the last several years forcing myself to eat every time I possibly could so I didn't have to go on a feeding tube, then having my body's response go in full reverse, but not changing my behavior.

"So. Doc. Tell me how to eat."

Yes. I'm a grown woman, needing to be told how to eat.

The thing is this. My body is a complex system with faulty wiring. Everything that I do affects it. Can't stay up too late. Must take meds on schedule. Must ration spoons/activity level - if I walk Elayna to the bus stop,I won't be able to walk to the library later. If I do air travel, I have to allot recovery time. Sometimes it feels like every minute of every day is devoted simply to maintaining that balance - teetering over a morass of pain, of fatigue, of seizures, gripping with my toes...

And I have been incredibly resistant to allowing food to be a part of that. Because it feels like fewer and fewer things exist out of that state of constant hypervigilance. It feels like this is one more thing that gets absorbed into the medical hell.

So it was very difficult for me to go in there and say "Tell me how to eat for IBS and for weight loss." The weight loss because I need to be able to exercise, because not-exercising makes the fibro worse.

It feels like another loss. It feels like giving up ground.

I remind myself that my health is the only thing wrong in my life, and that helps. I am rich in my family and friends and beloveds, if not in money. I have my writerbrain. I have a lot.

It just takes so much energy to stay aloft, sometimes.

Meh. I'll be okay tomorrow. After my next doctor appointment. *wry smile*


* I can tell this joke, because I was raised Jewish (and still am, partly). So you know.
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