Many folks with more progressive forms of Multiple Sclerosis experience spasticity. I'm a metaphor kind of girl. As I ponder a life plagued with excess spasticity, I often think of how to better describe the experience. It's like an umbrella constantly opening and closing. There is a long rigid base and the umbrella pops open and close, open and close . . . inside my body. It also reminds me of fireworks. I don't know when they will be let off or how spectacular they might be. Spectacular in the worst kind of way.
Anyone who knows me well, has witnessed this. Legs that won't bend. Often people are afraid of hurting me but those closest to me know that you have to force my legs to bend, showing them whose boss. My chiropractor has it down best though. He's patient, adding some visualization (our mantra getting me to my restful place: "beach, beach, beach . . " as he gently gets them to bend).
Transitions are the worst. Sitting to standing, standing to sitting, shifting in bed, getting in and out of bed, getting up from the toilet, lifting my arm to brush my hair, etc. Touching cool to cold water sends my body into spasms. Cold weather makes all my limbs flail making me the female version of Frankenstein. And for whatever reason, mornings are the absolute worst. My legs are like 2X4s nailed down to my mattress. Getting out of bed is like trying to pull myself out of quicksand. Sometimes as I shift, my legs then go into a different kind of spasm that forces them to bend. It's ultra cool, because they are bending, but I have little control and the spasm may lead to a cramp or injury. Learning to take advantage of some spasms, helps me to function better. There is a four inch lip to get in and out of my shower. I am not able to lift my right leg over the lip but if I let my toe touch the cold water it sends my leg into a spasm just long enough to get it over the lip. Sweet victory! Fingers are also known to spasm as they take on a life of their own refusing to straighten out.
Imagine this fun situation: Early last spring a sudden thunder storm popped up at my son's lacrosse game. I'm banished to the furthest end of the field where they built a separate wooden platform for wheelchair access. My husband was up in the press box keeping stats so we've been separated.The high school stands cleared out in seconds. I'm going full speed ahead across our turf field headed for the van, I'm holding my real umbrella that is now inside out from the strong wind, the cold air and rain have sent all my legs into spasms so I'm lady Frankenstein so frozen up that I can't even talk, my internal umbrella has gone off but won't close. Some nice person with an umbrella runs over to give me some cover. I smile because the situation is so ridiculous.
There are medications like baclofen that help with spasticity. Some people with even more severe spasticity have baclofen pumps installed in their bodies - mostly people with spinal cord injuries. I take one baclofen before bed to make sleep more restful. But I avoid them in the daytime because they make me a walking zombie (and I'd rather be lady Frankenstein). Diet also helps a lot. I'm doing a constant inventory of how my body reacts to certain foods. I have a healthy diet but I'm human. I'm weak and sometimes need some mindless munching. But it comes at a cost. For example, I know eating salty chips (even organic baked healthier varieties) are going to make fireworks go off in my legs. Lately, I've been stronger and calmer legs have beat out mindless nervous eating. Again victory!
So there you have it. More than you ever wanted to know about living with spasticity.
I don't want you to feel sorry for me (okay, maybe a little bit) but I do want you to be grateful. Every time you get in bed, get undressed or dressed, get up from the toilet, brush your hair, or make a run from a big storm, say thank you. Thank you. Thank you.
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