I have been able to mark off the entrance of each decade by marked declines in health/quality of life... Be it walking or wheeling, or simply laying down, each decade is carved on either end with something being taken away, something taking its place, or by the interim void created in between the two: I took my last independent steps at ten, started part time wheeling at eleven, took my last lopsided steps behind a walker at nineteen, and transitioned from manual ("push") wheels to battery operated (but still involving a less forceful "push") wheels at twenty, and final the first completely motorized chair at twenty two. Midway in my twenties I eased my way into my first rehab chair (more adjustable, including raised, seating, leg rests that raised and lowered... You know the type of chair for people that were reaaaalllly not getting out of their chairs!).
As I edged closer to thirty, I waited with baited breath trying to figure out what this decade's issue would be. And somewhere through the shadows of sleepless nights it hit me.
It was not just sleeplessness that was creeping in but an increasingly uncomfortable and painful issue with my leg. Something that at its start led to an inability to weight bear on my leg, and at its crux kept me in pain and discomfort constantly. And while I could stay busy and preoccupied during the day, at night there were no distractions. And so I tried reaching out for help.
Fast forward through the next twelve months and the dialogue turned from one over walking, splinting, operating, bone bending, stretching, electrode stimulating, forced standing, bone shattering, and sleep studies. Multiple providers with multiple opinions and I was beginning to feel like a cliché ("All the King's horses and al the King's men couldn't put Humpty together again"). I was completely drained after well over a year of chronically under sleeping. I had days when I left work early because I just could not take the lack of a diagnose or a clear direction pointing toward one.
Out of frustration I stopped looking for answers or hope. I decided that somewhere between the best outcome (aside from actually having my leg lay comfortably or being able to move it comfortably) and the least-worst one would be to sleep solidly for more than a night or two a week (at a maximum). It wasn't the fix that I wanted but it would be something.
I went on sleep medication. And tabled the leg issues for the time being. Truthfully though I never really had a chance to second guess myself because I dove tailed straight into the last ten weeks of my then job and the onset of the carpal and cubital tunnel issues that dominated the course of the following twelve months.
And for about eight months I slept well. I still needed my husband's help multiple times at night to help me get comfortable but at least the time it took from reposition to resleep was manageable. As I approached surgery on my dominant arm, the medicine failed to help. Faced with the daunting possibility of not being able to reposition my left leg and not being able to lean on my right arm to get up and find a better position for weeks, I frantically, but carefully, changed medicines under my primary physician's care.
The thing about sleeping medication or pain medication, is that I have seen a lot of my clients (from when I could work) doctor-shop and pharmacy-shop in a frenzied hurry. I know all to well how awful it feels as an adult when you cannot self-soothe your own body. And those feelings strike tenfold when it is 1am. 2am. 3am... I dislike taking any medication for anything other than an acute and temporary ailment, regardless of how assuring its "non habit forming" promises may sound.
I hope and think my doctors "get it" and view my cmt and its extraordinary affects on my pain, discomfort, deformity and disfunction as more than clinical manifestations of an untouchable disease state. I hope that they understand that sometimes sleep is about much more than sleep. Even with medication to help me sleep I still struggled with the inability to get my leg comfortable and also with a growing restlessness in my legs. And emotionally I really grappled with this -how can I nervously and frantically want to move my leg if I cannot move it period? And when the restlessness is accompanied by spasms, how can I have an overpowering need to forcefully flex my leg if those are micro-movements that I cannot do? And if cmt is the sum total of those crippled micro-movements, why are my normal coping abilities insufficient?
The day before Thanksgiving I happened to have my bi-annual neurologist meeting. I do not like her, have never really felt that she was helpful (a post on its own), because she has always seemed to espouse the mentality of viewing cmt symptoms as untouchable, predictable, and "normal" under the circumstances. But I figured this restlessness was worth mentioning.
And for once the discussions that have followed have been very engaging. She told me that restlessness is a central nervous issue, and that since cmt is peripheral, it is possible to both feel the restlessness and not be able to move/do anything about it. So I am not losing my mind.
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