|One of these people is Dysphoric and one is Euphoric. Guess… 🙂|
The trouble is, there are so very many ways to feel yucky, or dysphoric, especially with a disease like CRPS, but only one word to describe it all. Our experience of life no longer maps to that of a normal person, but language can’t describe what we experience. However elegant it sounds, “dysphoria” is inadequate.
That’s about to change. Here are some words I’m adding to the lexicon, a short selection of the most common and most describable (because some are indescribable) of the dysphoric states I move in and out of…
The particular kind of yucky I feel when I get up before I’m ready. It takes about an hour, usually, to avoid D-Sunnysidedown.
Otherwise, I get tremulous, nauseous, my heart races (but quietly), and I’m aware of a particular kind of fragile ghastliness in a minor key. If I really get up too fast, I fall over — muscles quit. This adds up to Dysphoria Sunnysidedown.
This is a natural consequence of D-Sunnysidedown and usually happens later the same day, but occasionally happens by itself. Darkofnoon involves feeling peculiarly ragged (as if my adrenals had been in overdrive for hours, which is accurate if I arose too fast), forgetful, physically weak, slightly shaky, and of course nauseous. Sometimes dizzy spells.
There’s a more solid kind of ghastliness, more in a dominant chord. Dysphoria Darkofnoon usually happens when the day is brightest, between 11 am and 3 or 4 pm.
Lying down periodically helps me get through the day, but I’m not likely to be quite right until a good night’s sleep and a proper start to the next morning.
Stunning levels of distraction, with a dense pale-grey cloud wound around and through my mind and perceptions, dissolving what it doesn’t hide.
It insulates me from such trivial issues as major appointments, where I put the keys, and the state of traffic lights. I can tell where my body is in space, but not how it feels. Likely to injure myself, risking further spread.
It would be tolerable if there weren’t any consequences or anyone leaning nervously away while looking at me with worried pity. When I’m experiencing Dysphoria Hate2Bme, the humiliation and underlying fear are the most dysphoric elements, though there is something intrisically unpleasant and destructive-feeling about the dense grey cloud.
This happens when I’ve overtaxed my body, though sometimes it happens by itself. I think of it as the mitochondria in my muscle and nerve cells all setting up a synchronized shriek of anguish as they fall over in a dead faint. (I don’t know how they scream while fainting, but they seem to manage it.)
It feels like my soft tissue threatens to dissolve when I try to get up or do anything. There’s a sort of wholesale, pitiable unpleasantness in mind, body and soul with the least physical effort.
My muscles react with a sort of “You’re kidding, right?” when I try to use them, and if I push through in order to get something done, it’s done by pure determination and then I’m out of commission for a couple of days. I pay hard for pushing back against Dysphoria Mitoshriek.
For all I know, my mitochondria have nothing to do with it, but mito self-care seems to help: tons of antioxidants, lots of vegetables, and as much horizontality as I can stand. I can tell when it’s time to start moving — about 3/4 of a day after I start really wanting to.
One thing that is no worry at all: I don’t ever have to worry about being too lazy.
|Your faithful writer at 2 yrs old. I refused help; I was going to
cross that dry riverbed all by myself, come Hell or high water.
Photo: JLD Tifft, used by kind permission 🙂
Bodies and minds, like engines, were made to go, and I’m most at home when I’m going in mine.
After the intense inward training of living as usefully and zestfully as possible despite CRPS, can you imagine what it would be like to have all this determination and energy unleashed on the world if I were finally well again, and could focus on, remember, and do things on a vaguely regular basis?
Can’t wait to find out.
So this is peaceful ol’ me…
…saluting all that keeps me from that.
Speaking of which…
Marathon training note
I’m stable with walking 1.5 miles at a time, and recover fast enough to do more later that day. Will aim for 1.8 later this week, after recovering from this trip.
Despite spasms and cramps etc., I made it all the way home in 1 day yesterday, instead of splitting the drive into 2 days as I usually must. This amazes me. My eyes didn’t cross and my mind didn’t splay into a messy 10-pointed star, both of which usually happen after 4-5 hours of driving with hourly breaks. So, there are some key neurological pieces that are definitely doing better.
Yay cerebral blood flow! Yay exercise!
It might be smart to take today off and stick to PT exercises and tai chi. No more bloody relapses. But boy, I sure am heartened!