Multiple sclerosis is different in every patient. I understand that, but it's very hard to accept the consequences of it. Once you have a diagnosis you want to ask your physician, "Can I recover? How much of this can be repaired? Will I get worse?" but if you have MS, no decent physician will make such a promise or forecast, because it's all individual.
Why is that? Simply put, MS just means you have some damaged nerves. How many and which ones, that's individual, and the nervous system is a really complex landscape. No two individuals have exactly the same layout of that landscape - sure, it follows the same basic pattern but the nervous system of an adult is like a tree. Two pines may look similar to a casual viewer but if you look carefully they are very different, as they are both the result of the environment where they stand. Even if they are cloned and have identical DNA, they will grow into quite different trees. With a random disease like MS which can affect any part of the nervous system, that matters.
I've come to compare it to pouring water on a slope. You can say "It will run downhill" but there really isn't much else to say that will be meaningful. Even if you only talk about slopes of such and such inclination and covered with a similar surface, on some level the results will differ.
Comparing MS to pouring water on a slope, "it will run downhill" corresponds to "some nerves will have damaged myeling sheaths". Apart from the type of damage to those nerves we don't know much about how this will manifest itself to someone with MS. The range of symptoms MS can cause is huge. If something in your body has a nerve - and it has - it can be affected by MS. Well almost, MS only affects nerves that are white matter, and generally not the peripheral nervous system. That doesn't really give much of your body safe passage from MS. Autonomous systems are generally excluded so MS probably won't affect your heart or lung functions, but a lot of functions you think of as autonomous but which actually are not, are frequently affected, such as nerves that control muscles you aren't consciously controlling. You cannot feel or control the muscle that controls your eyes' focus for instance, or the muscle that opens your bladder when you pee. Your throat may feel like a simple thing to control but: you do not have one effin clue how to swallow a mouthful of water unless those muscles do it for you.
As far as I understand, MS mostly affects the nerves at the boundary of decision making, where the simpler signal is about to be interpreted by the brain (or conversely, where decision in the brain is about to be transformed into signals to a muscle). One example would be the optic nerve, which I can describe in person. The function I lost was nothing that happens in the eye itself, but the ability to find some types of patterns - I lost the ability to find contours in multicolored images (as I described), my vision at the level you think of as "vision" seems quite untouched.
The frustration this causes is pretty hard to imagine. You don't know what will mend itself and what is lost, and the doctors won't say. And no matter how hard you try, most of the stuff that is affected is very hard to measure. Once you get past the really simple maneovers, it all comes down to willpower, because your enemy isn't really function, but fatigue.
I take walks, in order to practice. I need both to relearn how to walk, and I need to find both where my limits are and how to cope with them. Problem is, I find it very hard to say where my ability ends and willpower takes over, and that makes it very hard to measure improvements. In the beginning, I had very simple abillity tests: walking up the stairs, how many steps can I go without hitting or scraping the step with my right foot? After a while, I could climb two flights of stairs, so I started trying to run, and after a while I could do that too. I try to do anything that makes the whole thing more fluid, but that's hard to measure. The distance I walk every day improved nicely at first but once I had done it, the pace doesn't change much, and how long I can keep doing it is more something that's determined by the fatigue and my willpower than by any ability I can train.
I have one ally in trying to get my walks, anyway - Ingress, (app store) an "augmented reality game" by Google, where you play the game by visiting places in the real world and, well, doing things at those places. It let's me tell myself I'm not walking because I just "need to walk", I can tell myself it's a little bit important that I go visit that spot, even though I know exactly what is there and I was there earlier today. Convincing myself is sort of a game I play with myself. So far it has worked, at least inasmuch that it helped me move and get out a bit.
Writing these posts about the disease is part of me trying to relearn and get back ability, of course. My fingers have forgotten how to type, and I have trouble watching anything for any stretch of time, for two reasons: first there's a general problem of attention and concentration. Second, there's fatigue hitting the focus of my eyes. There's also a lot of frustration from typing so badly (horribly!) but at least I've relearned enough to be able to write this.
I didn't plan to make this a series at all, it grew by itself. I also thought this third part was going to be the last one but I think I may want to try to describe fatigue, too. Not right now though, I'm way too tired.
Oh, and I'm on the Enlightened side, of course.
