Disbelief

Another supremely discouraging daily occurrence in an MS-addled life is disbelief; your friends and family's casual shrugging off of your symptoms. You try to vent your frustration at experiencing a symptom, but because you "look fine" and function, people don't take your descriptions seriously.

Here are some excerpts from actual conversations I've had lately:

Me: My eyes are blurry. They've been like that all day. I'm a little worried.
XXX: Well, you haven't drank coffee today, have you? You're probably just tired.

(No, no I am not just under-caffeinated. True, fatigue exacerbates MS symptoms, but when my eyes cannot focus and I can't see clearly for extended periods of time, despite sitting or laying down, changing the light in the room, etc... it's more than just lack of caffeine.)

Me: I used to be able to take notes on what my professor is saying, as I evaluate and interpret their lecture. Now it's like my brain can't squeeze out more than one level of thinking at once. I feel like Flowers for Algernon over here!
XXX: Honestly, dude, I think it's just age. Not to be mean.

(No, no it is not just age. I know what thinking feels like on a normal day. I know that, for the past few weeks, in class as I sit, listening and poised with pen, I feel like I have weights on my arms, like my brain can't tell my fingers to move, like by the time I've succeeded in getting the pen to cross the page, the class has moved on, the noteworthy moment forgotten).

In these moments, where people I love try to console me by suggesting that maybe it's not my disease causing these symptoms, that maybe it's just a normal thing happening to me. And there's that word - normal. I understand why they tell me these things. They see the pain my illness is causing me, and they want me to push it to the back of my mind. To not put my disease at the forefront of my life. To get the chance to be normal.

Their intentions are pure, I have no doubt - but the dismissal of my symptoms as "I'm sure its nothing" makes me feel terrible. It discourages me from talking about my disease and my symptoms altogether - it gives me the feeling that my non-normality is abhorrent, that it should be pushed to the back of my mind, like if I bring it up I'm causing an issue that the other person has to resolve for me before we can move on.

Yet another reason why I hate talking about MS...another reason why the disease is so self-perpetuatingly invisible.

Silent, tingling

The term for it, or so I'm told, is "spasticity:" the sudden localized surge of electrical impulses that randomly cause certain parts of my body to feel like they've been splashed with water. Imagine a fat, juicy grape being suddenly and forcefully squished inside your skin, just near the epidermal surface. A burst of liquid-like sensations, so real that I look down to check if I haven't actually been hit by some water. I haven't. It's the spasticity.

My knee has been acting up lately. If I tuck my chin down into my chest, my left knee goes all pins and needles. It ceases the second I lift up my head, but as soon as I tuck it down again, my knee twitters and begins to go numb. It's frightening, like the moments after your leg falls asleep and the feeling is just beginning to come back, and the icy little jabs cover your muscles as you try to move, and the thought flashes through you that you couldn't walk if your leg was always like this, when is the feeling going to come back, already - and usually, that's exactly when the feeling comes back. You shake 'er out and feel relieved.

But the feeling doesn't come back. At least, not as frequently as it used to. My knee noe goes numb when I cross my legs. It goes numb if I'm laying on my side and I swing my leg over the bed to get out. It spasms and tingles even when I'm just sitting down. I hate it. I absolutely hate it, because I can't control it. I just have to sit there and wait until its over.

The only control I have is over how much sleep I get. My knee will stop tingling for the first few hours after I get up. If I'm overtired, it starts as soon as I wake up. I know the solution is to get more sleep, but that's so hard to translate into accommodations in every day life. I do a pretty good job passing, and so I find people look at me like I'm crazy if I were to bring it up.

When I write that reasoning down, it's hard to ignore how stupidly self-destructive it is. I'm afraid to ask for the accommodations I need because I'm afraid the healthy, able people I'd be asking would a) think I was lying "because I seem just fine,' or b) refuse in some horrible, un-ignorable manner which would simply cause me to have to undertake more responsibility: pursing legal action, dealing with office weirdness, etc.

I guess I don't want to out myself, because I don't want my disability to be the root. I don't want to cause weirdness, to be the person that did something to make everything uncomfortable.

But on the other hand, how am I supposed to reasonably act on this? Say I have class on Thursday. I'd have all day, until 6:00 PM, to do the reading for the class. Should be more than enough time to get it all done, right? But it's not. If I wake up and my legs are tingling, I start to worry, and the worrying takes such a physical toll that I get dizzy and have to return to bed for awhile. Add the responsibility of reserving my strength to make it to and through class, and I'm lucky if I can get a fourth of it done.

From my end, it's understandable. But honestly, if you were a professor, and one of the students told you "sorry, I didn't do the reading, I had to sleep all day instead," what would you think of them? Honestly. Wouldn't you automatically, perhaps unconsciously, think that student as lying, or lazy, or both?

I guess I don't have a good reason for why that bothers me to the point of self-detriment. I don't know.