Wednesday, January 23, 2013


I'm not one for denial. I like reality. I like facts. I like facing them and I generally don't delude myself when it comes to things. I'm a pragmatist. A realist. Some people might mistake this for pessimism, but there's a difference. A pessimist says, "why bother, there's no point, it's inevitable, just give up, there's no hope, it's over, might as well call it here," and so on.

An optimist is pretty much the opposite and keeps a sunny disposition and happy outlook no matter what the circumstances. I wouldn't dare call myself an optimist (because optimism tends to border on denial - "la la la everything is fine!"), but I tend to be optimistic about my condition. There's research and treatments and ongoing progress in finding a cure for me, so there's hope.

But even if there weren't any, I'd still fight. I would still face each new challenge presented to me to the best of my ability, because I don't know how to do anything else. I'm a fighter. It's an unusual trait in a female such as myself. Women tend not to like conflict and prefer it when everyone gets along. We're mothers and nurturers. We like it when everyone plays nicely. When we're at the playground and someone comes along and is a jerk and a bully to us, we tend to gather our little chicks under our wing and take them away somewhere safe where the jerk won't bother us. We find another park and leave the asshole to play by himself.

Unless you're me. I'm one of those women who will go right up to the jerk, tell them they have three seconds to play nicely with the others or I will punch them in the face. We were here first and everyone was having a good time until they showed up with their asshole attitude, so they can just leave.

That's who I am. That's what I do. I face things. I confront them. I look them in the eye and size them up. Yeah, sometimes they're a lot bigger than me, but everything has a weakness. Everything has a way around, under, through or across.

Every time this illness does something to me, my world is reordered. Sometimes, that's daily. Sometimes more than once in a single day. Sometimes it's quiet for hours, or days, or weeks. Some mornings I wake up feeling great and energized and ready to do ALL THE THINGS, only to be hit with massive fatigue an hour later while trying to vacuum the living room.

It can be frustrating, coping with so much change. I'll be the first to admit that sometimes I just want to sit down and sob because I can't handle it anymore (and I've done this). It doesn't help anything, but it does make me feel better, sometimes. Then I come back to my senses and kick myself for letting my condition get to me, get off my ass, dust off my butt and get back into the arena for the next round, because this fucker's not going to give up just because it knocked me on my ass.

I realize this is bigger than me, but all I can do is keep fighting. Why? Because I'm not about to lay down and die.

Do I get disheartened? Sure. Absolutely. And I allow myself that. But you know, the Litany Against Fear from Frank Herbert's Dune works for a lot of things, and really losing hope is pretty much just a form of fear. It's the fear that you're not strong enough. That you're too little to face this big thing. That you're alone. That you might not be able to come back from wherever you've been knocked. That you can't get up again.

But you can. If you can breathe and you can move, you've got more than a lot of other people do, so get off your ass and get back in there.

There is a codicil here, though, and that's honesty.

You need to be HONEST, with yourself and others. Being a fighter/warrior/gladiator isn't about being Leeroy Jenkins. But there's honesty and there's Honesty. If you genuinely, honestly, can't get out of bed that day, then you can't. Stay in it, eat cookies, cope with the fact that you're having a bad day.

If you don't want to get out of bed that day but are capable of doing so, don't lie to yourself and say that you're having a bad day and can't get out of bed.

There's a vast, vast difference between "can't" and "won't," and you need to be honest with yourself about which it is.

If you can't do something, fine. Okay. But be sure it's a "can't" and not a "won't."

So many people with chronic illness lie to themselves. But they don't think of it like that. They think they're being honest with themselves by admitting that they can't do something. It's a very seductive lie, too, because that can't is much easier to accept than won't.

If you can't do something, you're blameless. If you won't do something,'re just being a dick.

Don't be a dick, to yourself or anyone else. You don't like it when people are dicks to you, so why are you a dick to yourself? Stop it.

Be honest with yourself. At the same time, don't think you're a wimp when you lose the fight. No one wins them all. Sometimes you lose over and over and over again and you wonder why you keep fighting.

I'll tell you why.

You keep fighting because the only other choice is sitting on your ass. And if you're okay with that, fine, go do that.

Just be honest with yourself and accept that YOU made that choice.

Yeah, it sucks as a choice, okay? It does. I get that. But as I said above, I'm a pragmatist, and when given the choice between two equally crappy options, I'm going to take the one I can best live with.

And I couldn't live with myself if I sat back and just let this thing take over.

Because that's really what it comes down to. You choose how you cope. I realize there are people out there who don't have any coping skills to speak of and it really sucks to be them, but they can learn to cope if they're willing to put the work in to learn them.

But that involves work - work sucks and is hard and no one likes to do it, because it's work - and it involves more of that honesty stuff.

Yesterday I had another fall. Yesterday was a pretty bad day for balance and coordination for me. I kept nearly falling over, spilled things, knocked things over, and so on. My fall wasn't that bad - my left hip cramped up on me when I tried to get out of bed and I ended up falling because I couldn't get my balance fast enough. This happens and I wasn't seriously hurt. I jammed my right pinkie against the doorjamb and took a good chunk of skin out of it, but it's not broken. My left shoulder, arm and butt-cheek are sore where I caught myself, but nothing's broken. Just some bumps and bruises. Nothing ibuprofen can't ease. And now it's documented, so yay for that.

I've been sucking on my vitamins. I think I've managed one full day of them since refilling my vitamin case, but I'm attempting to do better.

I had a migraine the other day and ended up taking a pain pill for it (I have some hydrocodone I carefully hoard and use very sparingly - I'm averaging about one tablet every month, which I still think is too much, but it just goes to show that I'm in a lot more pain than I realize - I should probably be a little more honest with myself about that.*cough*hypocrite*cough*).

My anxiety has been bad lately, but I'm fighting it. It's getting better.

Saturday (1/19) I went to bed at 7:30PM and slept all night.

Monday I went to bed about 1:00AM and got up at 5:00AM. Yay, insomnia! Sleep problems are common with MS. Annoying, but common.

Being honest with yourself isn't easy. Denial is so tempting. I don't like to admit or accept that I'm in pain. That I'm in decline. That I'm losing pieces of myself and my abilities every day, because that's what this disease (I really hate that word) does. It takes away pieces of you slowly (at least my version does - other versions are faster, stronger, etc. so I'm lucky in a sense).

Just when you think you're used to the way your world is ordered, things change. Human beings are resistant to change, but it's those who can adapt that survive.

Sometimes it's fun. Sometimes it's like a game. Like, "oh, today we're going to go through the whole day COMPLETELY DIZZY! WHOOO HOO! Let's see how we do! YAY VERTIGO!"

Other days it's, "Oh, huh. I can't feel my hands. Well, this will be interesting, won't it?" Or "My eyes are working today. Guess I won't be reading much." Or "Whoa. Light sensitive today (photophobia)! No lights or computers for me today!"

Even the simplest tasks can be a challenge sometimes. Like taking a shower. Ever had a really, really bad case of the flu and the simple task of taking a shower was just too much effort? It was all you could do just to get in, get out, change your undies and crawl back into bed?

Yeah. MS is a lot like that, only it's EVERY. DAMNED. DAY.

You learn to cope. To fight. To deal.

This blog post got way longer than I intended, but hey. Make hay while the sun shines and all that. Right now I'm going to go get something to eat and go nap, because it's that time.

Right after I take my vitamins.

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I don't want any advice, "try this/have you tried," or any medical opinions. Anything else, feel free to comment!