Plans Canned Due to the Greedy, Movement Monster Dystonia

Beating the movement disorder DystoniaIt turns out that today’s post is going to be a more personal one. Yesterday, the uncontrollable muscle movements returned after a pretty significant absence. Yes, it certainly is a pain in the neck (and face and legs). Yet I haven’t been as disheartened as frustrated.  So many plans have been canned due to the greedy movement monster: Dystonia.

Last night I couldn’t go to the book club I was eagerly looking to attend for weeks. Nor could I catch all buzz at the community meeting to create a town youth center. I won’t be attending my town’s big girls basketball game at home tonight. And my #VionicWalkabout has certainly been put on hold, as just walking around the house leads to falls.

Why the sudden reversal, one might ask? My suspicion is that my body just knew I was soon due for the infusion I’ve been getting every four months. I am technically supposed to start it next week, but due to some “issues,” it will be pushed off until later in the month—if I’m lucky.

My boyfriend said that I seem to have little regressions every time I change my dose in medication. In some cases, this is true. Yet I’ve been decreasing the dosage of prednisone I was on for an autoimmune flare-up every week for almost a month with no perceived ill effect. On Monday, I switched to the extended release version of my dystonia medicine, and it didn’t seem to last as long as taking the lower dose version three times a day.

Then, I woke up on Tuesday feeling like I’d severely pulled my trapezius muscle. I had excruciating pain turning my head in any direction. The next day, my neck was more mobile temporarily after doing yoga. Yet I developed severe head pain to accompany the muscle pain toward the end of the day. By Wednesday the pain was much more tolerable—when you have lived through what I have, constant pain is something you learn to almost ignore unless it’s acute and unusual in nature. I just felt like my shoulder blade and neck area were sore from too much exercise.  (No head pain today yet—knock on wood. Oh, and also no yoga, hmm…)

At the same time, I noticed that my jaw was starting to catch. Sometimes I would be trying to converse out loud and the minor spasm in my jaw would cause me to stutter. Yesterday, that worsened into occasionally forming unintelligible words on the telephone as my jaw locked. Today, I would get caught on one word and keep repeating it until I was out of the episode. I would type the wrong letters and words than what my brain was trying to convey. Usually I am fairly eloquent and a speedy writer, but my limbs are on delay.

Full-blown dystonic episodes began yesterday. I was washing dishes when it happened, and I felt my right leg bouncing uncontrollably as it tends to do before a fall.  Sometimes I can almost will away the potential onset of a fall, so I repeated “no, no, no” to myself, as if those words alone could stop it. But my body apparently ignored it as I fell to the ground. I won’t bore you with the rest of the episodes I’ve had in the past two days. To summarize, they stink.

Writing has been my lifeline, even though I’m not usually writing about myself anymore. It gives me purpose while I’m committed to the couch. Yet, certain loved ones seem to want to punish me because I am trying to create larger pockets where I don’t have to do anything at all and can just focus on rest and getting better again. You just can’t win.

Believe me, I know the perils of being a workaholic. I know how critical work/life balance is to all, especially to people with health struggles like mine. Sometimes I just need that slap in the face to remind me, I guess; even if it hurts.

Dystonia, you’re not staying long, so don’t get comfortable. I’ve got big, big plans for the year that you’re just not allowed to stop.

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