And now, about neurological disorders

And by that, I mean a genuine neurological disorder, not something I was born with, not something that I'd use to identify myself. Not something that I'd proudly bear as being a part of me. Indeed, something I might melodramatically refer to on bad days as a manifestation of the devil if I didn't really know that it's a manifestation of a degraded and scarred myelin sheath that's not doing its job right any more.

I haven't blogged about it much (no pity parties, please), but it's with me every day. It walks with me and makes it hard for me to walk after just a few steps. It sleeps with me and wakes me with pain. It types with me until my arms and hands feel like collapsing from the keyboard. It tries to pin me to the chair as I attempt to rise. It leaves me helplessly supine on the couch at night, robs me of my energy, saps my strength from all four limbs, and makes my eyes cry for no reason. I don't think it will ruin my marriage, but it has done that to other people. It has ruined my digestion, leaving me permanently on heavy-hitting GERD drugs. It does kind of embarrass me, the way I now walk with no grace, lurching along like a younger, female Boris Karloff. It may be taking away my youth, my hopes for an active old age, my secret dreams (OK, I do dream sometimes) of hiking through retirement with my soul mate by my side.

It also makes me second-guess myself in ways that drive me crazy. It's hard for me to accept that sheer willpower won't push me through that fatigue or weakness the way it used to. If you've relied on willpower to achieve when all else fails, and now that fails you, too...you start to wonder if you've just given up or what. You start to think, "Wow, DMFP, you're just getting really really lazy or something. Just TRY!" But yelling doesn't seem to help. And people look at you oddly when you yell at yourself.

Before I got to a diagnosis of "cervical myelopathy possibly because of multiple sclerosis," I went through some interesting times. These included having one neurologist--who is still my neurologist, our having achieved detente--accuse me of having a partial conversion disorder. In real people terms, that part of it was "all in my head." I had a second neurologist decide, based on zero clinical or symptomatic evidence, that I had restless leg syndrome (!). Then, I had MRIs with spine lesions, which kinda rules out those two things, and some people started paying attention and then one of the country's top neurologists in Houston gave me that latest: cervical cord myelopathy (at C3) possibly multiple sclerosis."A cervical spine myelopathy and thoracic cord lesions don't have other causes than demyelinating disease (i.e., multiple sclerosis). All other causes have been ruled out. For reasons that are esoteric to the profession, no one has said, unequivocally, "You have multiple sclerosis." To a certain point, you get "possible," "probable," and "confirmed."

Next week, I have an appointment with a specialist in primary progressive multiple sclerosis (PPMS), and I'm scared shitless about it for so many reasons. Will he tell me I'm crazy, too? Will he blow me off, as so many doctors have done to patients in my situation (time to diagnosis from symptom onset with PPMS can be years)? Will he say I have PPMS, sealing the fate that somewhere at my core I sealed for myself a year ago? Will this be a huge waste of time and money leaving me with no real answers and no real options? In reality, I expect to leave with what I take in: myelopathy, possible PPMS. Which leaves me right where I am now. So, why am I doing it? I'm trying to trust my doctors, which is difficult for me. It's part character-building exercise, part self torture, part a sense of duty, all angst inducing.

Fear. I hate fear. But I'm afraid. Even if he says "PPMS," he can't do much about it. There are therapies for other types of MS, but not for this one, not in women. It just is. Sorry.

So, for the last couple of days and for the next few days, I have resigned myself to living inside this little bubble of fear. Fear of being dismissed. Fear of being diagnosed. And as much as I try not to peer into the future--what's the point?--a fear of the future. Will I be able to hike with my children in a few years? Drive? Walk? Sleep a full night without pain? Type, the core of what I do for a living? Will I have "cognitive issues" that sap me of the only real thing I've got going for me in the long term? Will I start peeing on myself? Gah!

When I reach that point, I usually stop trying to see into the future and re-focus my energies on today. Usually, that works. But this time, today is just a few days before That Day, and all I've got all around me is fear. And I don't see a choice of resolutions here that's going to make that go away. Unless, of course, whatever the hell this is just suddenly packs up and wanders off, leaving me to walk along without it, which would be just fine by me.