29 October 2015
So the biggest and most obvious result of my debacle is that my legs don’t work and it is permanent. Oh but there is more. There is so much more.
My body continues to change. Nerves, man, who knew? I’ve no hope of regeneration in the “OMG, I can feel my legs!” sense, but nerves do some wondrous things. I’ve learned a whole new vocabulary in the past 6 months and I even know what some of the words mean, but my real understanding is just starting. Take the peripheral nerves, for instance. All of us have nerves in our bodies connected to muscles and even to each other. In a functioning system, the nerves are also connected to the brain through the spine. My peripheral nerves have had their connection back to the brain cut, but their connection to each other and to muscles continues unabated. So what does this mean? It means the nerves in my legs talk to my leg muscles, but they don’t talk to ‘me’. Those nerves still ‘feel’ external stimulus, and they transmit signals to the muscles, but the transmittal gets cut off before it gets to my brain. The result is that (in a real life example) if my cat, Leon, bites my foot, my foot will move (making him think that I’m playing, so by the time I look down to see why my foot keeps moving, he has wrapped himself around it and is giving my shin a bit of cat judo). I only know my foot is moving because I can feel the bed move, or the move is strong enough to feel it in my abdomen, or as chance has it, I’m looking right at it. (For you animal lovers out there, yes, Leon is still alive and I’m fine. No blood, no foul.) The cool part is that my foot and my leg talked to each other and tried to escape the crazy little cat.
I also occasionally have spasms in my legs that just look (and feel at times) like slow, firm stretches. These moves aren’t in response to a naughty pet or any other external stimulus. It doesn’t hurt, it isn’t usually obvious to anyone else, and it’s good for my circulation, so I don’t do anything about it. Lately, though, these kinds of moves are getting stronger and here’s the thing, my massage therapist thinks they originate in my abdomen, not in my legs. Having felt this and observed this for some time, I have to agree with her. Often, coincident with the stretch, my abdominal muscles get positively rigid. And if that wasn’t odd enough, get this, I can feel my abdominal muscles doing this! I have no outside (skin) sensation from about the bra strap level down, but on the inside I can feel my abdomen flex. This gives me hope for being able to learn to control my core muscles for better posture and for better movement in the chair. So this is the up side.
In other changes, a lot of my hair fell out. This didn’t happen straight away, it only started once I moved to the Auckland unit and it has only recently slowed to normal levels of shedding. I never got bald patches and it wasn’t thin enough to see scalp, but a lot fell out. My estimate is about a third, but because I have so much of it, the loss wasn’t really noticeable to anyone but me (and the nurses who saw the hair in the shower drain – holy crap! was said more than once). I can now wrap a normal hair tie around a pony tail three times instead of two. Also, my nose is cold a lot of the time. This is a new and unwelcome development. Even when it is reasonably warm outside (or next to the heater), even when my hands are warm (unheard of), my nose is annoyingly cold. Another development started in the rehab unit and continues now. From the waist down, mainly at night, I sweat. And I don’t mean that I get a little reddish tinge to my skin or that I glow a little, I mean sweat. Ew. Why? The only explanation is ‘nerve weirdness’ or autonomic neuropathy. I take medication to turn it down a notch, but it still happens. It means I’m having a little trouble with my temperature regulation, so sometimes I’m sweating from the waist down and shivering from the waist up. Of all the wonderful things Steve does for me, top of the list at the moment is sleeping in a room so warm it would stupify a tropical lizard just so I can be comfortable. Night after night.
I can’t say I’m looking forward to more changes. It seems like most of the changes have turned out to be irritations. If it’s all nerves, why can’t I wake one morning to find that I have exceptional hearing or that I can see perfectly with no reading glasses? None of these developments make me feel angry or sad, mostly I’m just mystified and curious. The body is a pretty special piece of equipment and my curiosity about it helps me cope.