This is harder than it looks.

Food: Breakfast: clementine, 4 oz my granola, Tulsi Sweet Rose tea

Sleep: 7 hours, uninterrupted, my bed

Drugs

  • At bedtime -Zyrtec, Singulair, Trazadone, Benadryl, Stool Softner (too much Vicodin and Skelaxin yesterday/last few days), Skelaxin, 4 Ibuprofen. 
  • Morning-Zyretc. Conteplating steroid but putting it off.

Activity Yesterday: Returned from Iowa City visit: hotel, Hans’s house, two hour drive. Worked on laptop in car but very sleepy. Napped, worked at computer two-three hours, but overall very sluggish. Strange hunger variations. General feeling of exhaustion, stress because Anna needed parenting and house needed cleaning. Feet numb and cold but only in perception, not to touch. Hot bath helped but sapped last of my energy. Watched several movies but should have been in bed at eight. Stayed up to be with Anna, help give cat fluids when Dan came home, and to be bucky and decided I didn’t need to rest, I guess. Ate erratically. Would vacillate from not feeling hungry to eating whole bowl of popcorn and wanting salt desperately to the point I considered eating it straight. Ate ice cream and cookies though I suspected it would exacerbate my situation, but angry and cranky and ate them anyway, because, fuck it.

Symptoms This Morning: Left leg very numb. Sitting aggravates. Back of left thigh beginning under what this site is calling the Ischium. Would buy that ligament is in trouble. Whole leg feels moderately to severely numb, particularly down the back of the thigh and both sides of the shin and the top of my left foot. However, this very much feels like randomly it could switch to the right side of my body.  Right foot at present only moderately numb, on top near big toe. Neck is fine, though shoulders already sore from being at computer. 

***

I’m starting this blog because I need to keep track of that stuff above, but it’s both boring and terrifying and for a decade I’ve processed that stuff on a blog. I still do on occasion post on my regular blog about health stuff, and while readers seem to often enjoy it, I want to post here more than is probably wise on something which is mean to promote my career. Plus I don’t want my illness to eclipse my work. I’m not my illness, and I don’t ever want to be. But sitting to write it is proving hard, because simply chronicling things makes me angry. Here’s hoping this venue proves therapeutic.

Yesterday felt like a lot of fail. Despite napping and attempting to modify, mostly I felt like I failed miserably. Today I feel much more rested, but my legs are bothering me quite a bit, and I think though I’m not experiencing pain my head isn’t quite right either. Every time I move too fast or try to change laundry everything feels like a strain. 

I think sometimes what bothers me most is remembering when none of this happened. I think actually I’ve always had this, but it didn’t used to be this bad. I remember being able to pick things up and haul them and walk endlessly and not get any more tired than any out of shape person. Little things like dishes and chores–I don’t want to do them any more than anyone does, but I wish I didn’t have to face each one with an assessment of what it will cost me with no real guide map as to what is and isn’t a good idea.

What’s bothering me a lot today is I feel like I’m admitting what I feared I’d have to when I cut gluten back in October. I worried at some point I’d plateau again and regress. In so many ways I’m better, because I don’t get that horrible back pain, and I’m not as exhausted, but yesterday reminded me that a simple overnight to a town two hours away can exhaust me. That sometimes my plans to work, write, answer email and in general exist in a semi-mainstream fashion will be either clumsy or shattered, and I can’t do anything about that.

Also bothering me today is my weight. I have a lot of anger about not understanding what I can eat and not feeling like anyone will really tell me. At best I feel like I should try the Fuhrman diet again, except I’m aware of how impossible that makes it for me to eat, being gluten free and vegan-whole foods, and I’m exhausted before I try. It’s one thing at home, but for example, today I need to take Anna to the barn. The driving, the being in an allergen environment is another story altogether—but I want to take her. I want to go. Except I have to think, now, about what happens if I’m hungry in a desert where everyone else can eat anywhere they want.

I think this is what makes me so upset lately. I was making Anna food the other day, and it struck me how odd it was to have to view as poison for me what I could make as dinner for my child. To be at a restaurant and not relax and eat but worry about every ingredient, every label, every micro aspect of eating. It’s the loneliness of it. The feeling of separation, of being apart from what everyone else can enjoy.

Sometimes the greatest challenge is not making every loaf of wheat bread, every set of stairs, every load of laundry a metaphor for my exclusion. In September I was terrified by the thought the doctors might tell me within a few years I wouldn’t be able to drive my daughter anywhere, let alone take her to see her horse. Today that fear is buried far down, and I’m angry and hurt we can’t eat together at Subway like I know she wants. It’s hard not to focus on the things I can’t do instead of those I can, those I do.

Here’s some irony for you. As I’ve sat here writing this, the tightness and tension in my left leg below my knee has deeply abated. It remains in my left thigh in the back, by that ligament, but that’s it. Oh fine, when I flex my ankle it feels tight and strange, like something half asleep that doesn’t want to wake up. But it doesn’t hurt. Not like it did.

I think I’m going to go make my smoothie and do ten minutes on the elliptical to stretch my legs out. Then I need to tackle my to do list. I think I have good odds with it today.

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