Saturday, February 4, 2012

Putting The "Hand" In "Handicapable"

My gorgeous band has a show tonight that I expect to be a lot of fun. I love this band, I love being creative within a group. In the "completely unhelpful" department, I've been having a lot of trouble with my hands. This is keeping me from fully participating in the alchemy and has long been digesting my essence and making me grouchy. Specifically, until two years(!) ago, I used to write words and play the accordion and (occasionally) the piano in this project. I can no longer push any keys or hold a pen long enough to write many lyrics. Typing isn't that much better (this took me days to compose) and offers an uninspiring flow. I feel particularly grateful that I can still sing, since it's the last working musical talent I have.

Backing up - before the Mysterious Fainting Thing, there was the Mysterious Hand Failure Thing. The Mysterious Hand Failure Thing is on the horizon of its 3rd birthday, which is a life lived too long. I already knew I had Raynaud's disease, where the fingers and toes turn white or blue and feel cold or numb due to low temperatures or stress (or, you know, whenever). This used to be more of a nuisance than anything, but over time it has really inhibited my ability to use my fingers. Separately, one day I noticed I'd been waking up with stiff and painful hand joints.

Raynaud's On The Bus Goes Round And Round


I've since been tested multiple times for rheumatoid arthritis, lupus, carpal tunnel, and something else I can't remember. I was going to start the food allergy elimination diet a year and a half ago, but then I got a new job and knew starting both at the same time would end in failure. So, life happened, I will undertake that task in the next month or two. I'm already used to restricting my diet, what's a couple more weeks of more intense regulation? Right?

My ability to go with the flow as proactively as I can has begun to fail in this department. I'm completely over having scant use of my hands. I don't have trouble every second of the day, just most of them.

Things I Used To Do Before My Hands Mysteriously Stopped Being Reliable:

Hold and use a pen for more than a minute or two.
Type quickly and efficiently.
Play the accordion.
Play the piano.
Play the guitar/ukulele.
Play the zils or Turkish spoons or any kind of percussive instrument.
Use chopsticks.
Use a hair or makeup brush or without dropping it every other time I pick it up.
Put quarters in the laundry machines without dropping them everywhere.
Do the dishes without dropping something.
Make my iPod go without a bunch of extra effort.
Push "buttons" on my phone.
Sew.
Do crafts.

Many of these points could also go on a list called "Things I Used To Do Before Myasthenia Gravis", but my MG is under control at the moment (small mercies). As I said, the points that vex me most are the ones involving writing or playing musical instruments. The fact that songwriting is nearly impossible right now is giving me a huge hangup. I'd like to be able to do that while I'm sitting at home. As for sewing and crafting, I can no longer even affix rhinestones to things, which makes this magpie weep glittery, glittery tears. Also, I'm naturally a klutz and this is further wounding my pride. Thankfully, Bill has become quite adept at being my extra limbs.

2 comments:

  1. I'm so sorry that you're having so many problems. It's got to be hard to figure out new ways to express yourself when so many are not available to you.

    And I'm sorry that you're having trouble with physical writing, because I really like your writing!

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  2. Thanks, Kathy! Hopefully, it's a easy as finding a food allergy and removing whatever it is from my diet. If not, maybe something else will come up.

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