My life has been quite odd lately. I feel a bit as though I’ve slipped into an alternate dimension where all elements are decidedly different — light, sound, time, speech, matter. Everything has been too bright or too shadowy, time has been thick and slow or breathtakingly quick. Sometimes I don’t recognize my own body. Chronic illness transforms your body into the unknown, feared enemy, yet it is essential to approach that “enemy” with compassion and kindness, as though it is indeed your own. I’ve talked about this before.
I have a list of things I’ve wanted to share with you, but for the moment at least I’m figuratively throwing out the list (figuratively because the list is hibernating at the bottom of an unsteady pile of many other neglected items). Various things have occurred in my life in the last month-ish, including a lovely visit from my mother. Here is a picture of my mother and me making cupcakes long ago (I am the small child with the strangely droopy-eyed expression…also I seem to be wearing a ribbon of some kind…why am I wearing a ribbon?!):
I don’t know what other word to use to describe how I’ve been the last week or so other than sick. Several unpleasant symptoms arose simultaneously, which is always terribly exciting. I won’t go into completely lurid detail, because I must maintain some semblance of not being 75 years old. Okay, I wanted to give you a picture of a 75 year old woman at this point in the post, and although I found several worthy candidates, I realized how ageist and unfortunate I’m being, and could not bring myself to implicate some unsuspecting elderly woman in my stereotyping. So, instead, here is a close-up of the border of a 75 year old certificate from an MIT fraternity, depicting a woman and an eagle. Enjoy!
I will tell you that I’ve had a few migraines (or perhaps one lengthy migraine which took a short vacation in the middle). I’ve had migraines many times before but these were much worse than usual, spanning quite a few days each, and were accompanied by other unsettling symptoms. I had a fever for a couple days during the migraine, along with stomach issues and a complete lack of appetite. It can be quite frustrating when things like this happen, because it is virtually impossible for me to determine what is causing the symptoms or what will alleviate them. I wondered if I had some kind of flu, or if it was all related to the migraine, or something else entirely that just crashed the migraine party. Normally, with a little reassurance from Rob, I can assuage my worries about new symptoms (do I have meningitis, are aliens infecting me through my dreams, am I secretly an alien, etc…).
However, I know it’s important to rule out the possibility of something other than FM or dysautonomia when completely new, inexplicable symptoms appear. Clearly I need to find a general practitioner so I have someone to help me rule out alien influence. The last two GPs I had did not believe FM was a legitimate condition, and since I left them I haven’t had the energy to find a new doctor.
The migraine, etc was also upsetting because I experienced a new kind of pain with it. I think I had forgotten an important truth, which is that unless you are dead it is always possible to feel worse than you currently feel. I’d thought I’d experienced some version of every kind of pain my body could produce, but that is clearly not true. Along with the migraine, there was what felt like a tiny, intricate net of extremely sharp pain imbedded in the muscles of my arms, neck, shoulders, and legs. I’ve experienced sharp pain in these areas before, I think almost everyone with FM has, but for me pain at its worst can be near-constant, but there are always breaks, even if only for a few hours. This weird net-like pain was constant, which made me feel a tad crazy, even while lying in bed with the lights out.
Thankfully, this specific species of pain gradually left me yesterday, and I am now left with just remnants of the last week’s experiences — a slightly throbbing jaw/headache, mild stomach problems, exhaustion.
My dysautonomia (which I’m going to try to call DA from now on) has also been in an uproar lately, probably exacerbated by all the other excitement. I can go from shivering cold to soaked with sweat and back again in 5 minutes. I’ve been incredibly light-headed, dizzy, and out of breath just from basic movement.
If I’ve had enough symptom-ing, you probably have too. Moving on, here is a book I recently read, recommended to me by my brother Boris (who has introduced me to many of the authors and musicians I love):
Never Let me Go is the first book by Kazuo Ishiguro I’ve read, and I found it to be incredibly moving. It snuck up on me — I was about 2/3 of the way through it, feeling mildly intrigued, enjoying myself, but a bit distantly, when I realized I was engaged in something much more powerful, real, and immediate than I’d thought. If you’ve read it, please share your thoughts, even if (especially if!) they differ from my reactions.
I’m now re-reading Pride and Prejudice (I watched the 5 hour BBC film version for the millionth time in my recovery period of being ill — it’s my comfort film, clearly) while I wait to read Haruki Murakami‘s new book (I am enormously excited!).
I’ve also begun a new jewelry project, inspired tangentially by my lovely friend Clare, which involves cutting out the scandalous phrases from romance novels and making things out of them (pendants, bracelets, rings). It is all very amusing.
Wow, clearly I need to read this, and/or hang it on my wall:
In closing, I would like to express my fervent desire that the producers of the american version of Iron Chef create a vegan version of the show, or at least a vegetarian one, so that Rob and I can stop watching delicious things like cilantro and tofu
marred by things like duck fat, fried claws, and snail shavings (none of which I made up, unfortunately, or will be providing a picture of (you’re welcome)).