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)).

For those of you still stopping by, I wanted to reassure you that I have not fallen off the face of the earth. I will, in fact, reappear shortly and update you on biofeedback appointments, medications, cupcakes, visitors, gardening, and the general state of my life with FM/dysautonomia. I can sense your excited anticipation through the screen, even across all these miles. I will not disappoint you!

Here is a picture of anticipation:

and here is a picture of disappointment, which I hope you will not feel upon reading my upcoming posts:

DePaul University in Chicago is, I believe, the only university or college in the country to have a specific program designed to help students with chronic illnesses finish their degrees. I think this is a very exciting, necessary program! I only wish there were more programs like this one, and that universities were more aware of the unique hurdles students with chronic illnesses face when trying to earn a degree.

DePaul’s program has no minimun course load requirement, no limit on the length of time needed to complete a degree, and they allow students to be inactive for a quarter or more if necessary, without losing their enrollment standing. I think this is so fantastic and wonderful, and I can imagine that it would make attending classes infinitely less stressful. Although I know very little about the university otherwise, I really respect DePaul for opening up doors to students like me that were previously quite bolted shut (and you can imagine how difficult it is to pry doors open when you are already exhausted).

Here is information about the program, from DePaul’s website.

Here is a brief article about a symposium DePaul is having about college and chronic illness.

To balance out the seriousness of the previous post, I’d like to share with you two food-related excitments in my life recently.

It is often really difficult to prepare easy, quick, appetizing, and nutritious food when my energy level is exceptionally low or my pain level is high (or other myriad FM and dysautonomia symptoms are present). Perhaps I will write more about this in a future post. I often wish there was a cookbook written specifically for people with chronic illnesses. Maybe I’ll have to write one myself.

Rob and I often cook together, and having his help sometimes makes the difference between eating a good meal or not attempting it at all.

So, we’ve had a lovely golden spaghetti squash sitting on our counter for too long, and a few days ago I did a little online recipe research to figure out how to make the spaghetti squash appealing (I am a butternut squash person generally).

None of the recipes really spoke to my diet or energy level, however. I ended up piecing a few together, adding some of my own ideas, and somehow managed to create the Most Delicious spaghetti squash dish! It’s pretty simple, but I was still impressed.

One thing I did that made a huge difference was to repeatedly stab the enormous squash with a knife (and a fork, because it made an interesting pattern) instead of cutting it in half before baking it. This was fun, and eliminated the excrutiating task of wrestling the hard squash in half. After it was baked, cutting it in half was almost effortless. Also, I was able to rest while the squash was baking, before I made an enjoyable sauce. The sauce consisted of a large onion and garlic sauteed in a little olive oil, 4 tomatoes chopped up, vegetable broth, lots of herbs (basil, marjoram, oregano, chili powder) and pepper, a little salt, and of course nutritional yeast, which I always use lots of because it is good for you and I LOVE its taste. I scraped all the spaghetti squash into a large bakeable dish (spaghetti squash is so weird!!),

poured the sauce on top of it, grated some parmesan cheese on top, and baked it for about 15 minutes. It was So Delicious. I used pre-chopped garlic, because I reached my chopping limit (cue hand/arm pain, shortness of breath, dizziness, etc) after dicing the large onion and the tomatoes. While I prefer fresh garlic, this is the kind of adaptation that is necessary in order to get through daily life with a chronic illness. Doing less in this way allows me to do more.

Also, to depart momentarily from vegetables, I have recently discovered a heretofore hidden love of CUPCAKES.

Aahh! Why don’t I live in Chicago?! http://chicagocupcakes.com/

I tried to make some from The Joy of Cooking a little while ago, and somehow managed to create the antithesis of a cupcake, which was quite sad. I want to make a cupcake recipe from Vegan With a Vengeance,

which I love reading but wish there was an FM-friendly version of (sigh). Meanwhile, I’m going to use a mix (but! calm down, it is filled only with non-hydrogenated oils and no gross chemicals!).

For now, I’m dealing with my chocolate/sweets issue (detailed in the post Gluttony vs. Pain) by making sure that the majority of said sweets are as healthy as possible (made with whole grains, healthy fats, no high fructose corn syrup or preservatives, etc). However, my cravings for sweet chocolatey-ness when I feel like I’ve been repeatedly run-over are still not ideal. At least I am not craving Vicodin, right? This is what I tell myself.

Speaking of pain pills, I would like to share with you my experience with Ultram, or Tramadol, keeping in mind that people react to medications differently. Dr. Silverman first prescribed this for me almost 2 months ago.

It is the most widely-prescribed pain pill for FM patients, because it affects the opioid receptors in the brain (as opposed to reducing non-existent swelling, which is all that over the counter pain meds do for most FM sufferers). Also, it has a low risk of dependence, it’s not a narcotic, and it has the side-effect of increasing levels of seratonin, which are almost always low in people who have FM. At first I was quite skeptical of its eficacy, as I’ve never been given any medication that has affected my pain in any way. However! While Ultram does not eliminate my pain by any means, it does seem to file down the sharp edges of the pain, and has often allowed me to have active, enjoyable days with little focus on pain.

It has been quite exciting! I do notice that I take about half as much as the doctor prescribed, which is evidence of my lingering societally-influenced belief that medication is negative and a sign of weakness. I am fighting this belief, because I also know that the kind of pain I am chronically in can actually change the structure of my brain, causing damage to a variety of areas. (I try not to think about that too much however, as it is distressing).

Okay, I’m about to venture into my kitchen and attempt to construct something edible, simple, and healthy. Wish me luck!

Without the imposed structure of work or school,

there are times when I forget everything I love about my life and buy into the societal belief that a lack of structure equals incompetence, laziness, and worthlessness. I’ve worked very hard to move away from this negative belief, and to realize that whatever I am excited about, whatever makes me momentarily forget about FM and dysautonomia is worth pursuing. This leads me to a string of cliches, all of which, however, are relevant: who are you living for? follow your bliss, etc.

My health issues add another element to the search for what I want to “do.” It becomes harder to clearly look inside myself and know what direction I want my life to take when my health issues limit the possibilities.

I used to want very strongly to be a neuropsychologist and work with children on the Autistic spectrum. While I am still deeply fascinated by Autistic disorders, the classes/degrees required to get to that point are currently out of my reach, not to mention the fact that even a part time job (especially in a situation where I could get physically injured) is currently too much for me. Also, my very brief stint at the Lovaas Institute showed me that not all Autism treatment is equal or in agreement with my philosophies. Despite its successes, I know I never want to have anything to do with ABA (applied behavior anaysis) or DTT (discreet trial training). I’d really like to learn more about Floortime techniques, as it sounds more like the kind of treatment I’d like to be a part of. Some Austic individuals who have undergone ABA have written about the negative impact it can have. Here’s one such person disputing the neutrality of wikipedia’s entry, complete with an excerpt from his autobiography. Jasmine Lee O’Neill (who I mentioned in an earlier post) is also Autistic and anti-ABA.

Okay, thus ends the Autism tangent.

Although I’ve had FM for years, obviously I still struggle to integrate my old self and goals with my current reality. Although I realize it directly contradicts what I’ve written in the previous paragraphs, I try to think of FM and dysautonomia as opening up possibilities in my life as opposed to limiting them. Every legitimate treatment plan I’ve come across emphasizes this paradox in some way — that FM/chronic illness will derail your previous assumptions about your self, your plans, your daily life, but the only way to successfully live with it is to fully accept that everything has changed, and to adapt, make new plans, to move forward without dwelling on regrets, resentment, disappointment.

Here is Robert Pepperell’s painting “Paradox:”

http://robertpepperell.com/

For me, there is a huge difference between knowing this intellectually and believing it emotionally. I’ve come a long way in the last year and a half or so (with the help of my therapist who has sadly since moved) towards truly accepting my chronic illness and changing my life in ways that help me. I used to view FM as a separate entity, something I was always fighting against, always hating, always trying to act like I didn’t have it. This attitude, which felt like strength, like “not giving up,” actually made my symptoms and my emotional state worse.

Now, more and more often I’m able to see my chronic illness not as an enemy but simply as the state my body is in, as something that I need to help it with. My body and I are friends now (with an occasional spat or misunderstanding, but these are present in any friendship), and I’ve started listening to it and adapting my behaviors in response.

I used to want to tread upon the neck of FM (and by extension, my own body) like Naram-suen trod upon the necks of his enemies:

But now my body and I are

In the past, if I was engaged in something and my body complained, I would ignore it and continue doing whatever it was I was doing, because I thought that kept me from being weak or letting the illness “win”. I think it was also because I didn’t want to look it in the face, to accept what I’d lost and to start the hard work of finding a new life. I’ve met many FM sufferers who share this maladaptive view, that pushing their physical limits and ignoring the symptoms is a way of “fighting back,” of not giving up. I’m incredibly glad that it didn’t take me longer to shed this way of thinking.

In honor of this post, I’m going to begin reading Illness as Metaphor by Susan Sontag. I started this text a few years ago, but I think that at the time I was still judging myself from the standpoint of those metaphors, and I wasn’t really ready to emerge from them.

I just wrote a post, complete with illustrations, and through a series of absurdly frustrating events it has been lost.

However! Instead of throwing myself to the floor and forsaking my computer, I am going to re-create the post for you. Let’s hope that the parts I forget needed to be edited anyway.

Despite my previous assertion that summery weather increases my mood, yesterday’s blue skies and a world full of palm trees and sunlight found me feeling hopeless, scattered, and stuck. My physical pain was increased, caused by a variety of factors, some of which remain a mystery. I also missed my nightly dose of Rozerem the previous night (because I had been too exhausted to pick up my refill). I wonder if there is a correlation between the missed Rozerem and the increase in pain, but it is impossible to be sure.

I wanted to share my day with you, but I was afraid that anything I wrote would be overtly negative and in all caps (I HATE EVERYTHING TODAY, etc), and I didn’t want to subject you to that. (You’re welcome). However, in the absence of articulation I was able to find some images that reflected how I was feeling. Here are those images, only slightly belated:

www.jankoepper.de

Dying Amazon, Franz von Stuck, 1905

http://www.chocolatespoon.com/musings/index.html

I am feeling a bit less stagnant today, although I am still skeptical of the day’s ability to keep me afloat. To increase my chances of floating, and to remind myself of the positive occurrences in my life lately, here is a list of them:

1) Rob and I are going to a film premiere tonight, at which a short film he scored will be screened. This is exciting in and of itself, and it also means that I get to dress up (my black opaque striped tights will make an appearance, as will my black velvet jacket!). Perhaps you will have the honor of viewing a photograph of the two of us looking dashing.

2) I finally made an appointment with the biofeedback for heart rate variability person that Dr. Silverman referred me to in order to treat my dysautonomia. His name is Dr. Kassel, and I spoke briefly with him on the phone — he sounds quite promising — warm and amusing, like a real person as opposed to a Doctor. I am cautiously hopeful about the appointment, and I’ll let you know how it goes. It will be fun to be hooked up to machines and covered with electrodes and wires!

3) One of the dwarf sunflowers that I grew from seed has bloomed as of today! It is so valiant with its small stalk and rich yellow petals. I think I shall plant many more dwarf sunflower seeds so that I can have a miniature orchard of them!

4) Yesterday I took the 2 doggies to the dog park, and despite Artie’s incessant, remarkably sonorous barking (my FM makes loud noises painful for me), it was a successful outing. Olive and Artie were delighted to explore sans leashes, and taking them made me feel more like a real person, despite the otherwise gloomy nature of my day.

5) Rob and I made seitan burritos/tacos last night, and they were scrumptious! I made mine with garlicky spinach, soy cheese, and tons of cilantro and salsa. If it weren’t for the scurvy, I could live on mochi, seitan, and artichokes. Which reminds me of a game my father and I used to play — we’d pick a few food items and (mentally) determine whether you could nutritionally survive on only those. There was also another game in which I’d have to decide whether the various parts that made up our meal were old world food or new world food. Linguistic anthropologists can make amusing fathers.

6) I wrote this post twice, despite being hungry and having low energy, which is officially impressive.

There are many things I’ve made a note to discuss with you, sweet, faceless readers, and I can imagine writing an engaging, colorful post about them. Alas, imagining it is all you will be able to do, because I cannot summon the mental or physical energy today to write fully or well. Part of coping with FM, as I’ve mentioned before, is learning to do less, and to do things differently than you’d like to or think you can. I tend to be a very all-or-nothing sort of person, hence the fact that I haven’t posted here in a week. However, in the interest of being more involved in the world and smudging the precise features of perfectionism, I am writing this post, which will be brief and may not live up to its imagined version.

Despite that gloomy intro, I’d like to share the fact that I went out yesterday and walked around in the sun and purchased some comfortable, yet non-sweat-pant clothes (I will discuss FM and clothes in a future post! Get excited!). This included a pair of comfortable shoes with good arch support (I have flat feet) which are also quite lovely, and a pair of linen pants which are So. Comfortable. and yet can be worn in public.

I inadvertently skipped my nightly dose of Rozerem on Saturday, and this, combined with half a cup of coffee with friends at about 5pm, being excited about spending time with said friends, and eating dinner late, led to the inability to fall asleep until 7am (YES! 7 in the Morning!).

I did, however, catch up on some emailing, so that was good. Saturday’s complete lack of sleep + adjusting to daylight savings + whatever else causes FM and dysautonomia to thrive = about a week of feeling pretty energy-less and awful.

However! In the midst of feeling unfortunate there has been some definite excitement — it is suddenly, incredibly summery here, which has a giant affect on my mood (I become a giddy, small child). Southern CA’s climate is wonderfully absurd — my memory of last summer has barely begun to fade, and already it is summertime again. I am in favor of summer.

In gardening news, I have had to sacrifice several pansies for the sake of the rest of the plants (although it was gratifying to cast the aphids out of the house).

explodingdog.com

I have discovered an artist I enjoy: Ya Ya Chou, and I’ve put up 2 of Chou’s pieces on the Art page, with commentary hopefully to come once I feel a bit better.

Here are some things I’ve been excited about recently:

interracial couples

Sex, Lies, and Videotape (I love James Spader!)

the beautiful Whitney from The Hills (yes I have horrendous taste in television)

With the daily pain, exhaustion, and myriad other distressing, often inexplicable symptoms I experience with FM, dysautonomia, etc, it is easy at times to become disheartened and bitter (not sweet or salty, but occasionally sour).

Sometimes I forget what it’s like to feel excited about something, to feel hopeful, to lose myself while focusing on something enjoyable, especially as many of the activities I used to find delight in are now difficult or impossible. I’ve been making an effort to pinpoint the little, accessible things that make me excited and hopeful, and I’ve been doing these things when I feel awful and hopeless, cultivating my interest in them and increasing my ability to appreciate the world. When this works for even a few moments it can be a huge relief.

With this in mind, I’ve decided to start a new page on this blog, in which I show you bits of art I’ve come across that have moved me, and I try to explain what it is I enjoy about them. I’m hoping this will remind me that the world is lovely and delightful, and that I can be a part of it. Please feel free to share your reactions to this new page! It is a bit of an experiment.

I came across this story, and while it is a bit lengthy I wanted to send you to it because it presents a great metaphor for what it’s like to have a chronic, invisible illness. For those of us who experience this, it’s validating and comforting to read about an experience similar to ours, and for others it offers a glimpse into what we go through. Plus, there are spoons.

Spoons, Michoacan, Mexico, 1994 Spike Mafford

Also! Don’t let this snippet of a post distract you from the more substantial post below!