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.

Thursday, January 10, 2013

Slowly Recovering

I'm getting there, I'm getting there!

I ordered new vitamins last week and they arrived today. I've decided not to renew my pool pass this quarter. Not only do I not want to shell out that kind of money right now, I've started a new fitness regime that benefits both me and my dog. He's got some health issues too, and has been ordered by his doctor to walk twice a day to help it, so out we go. The last two days the weather has NOT been permitting, so we've just sat around, but we'll get back to it tomorrow morning, rain or shine. (Here it's usually rain, which I can cope with. It's the 50MPH winds that are difficult.)

So tomorrow's plans include getting back to the fitness regime and taking my vitamins again. This will wear me out (the vitamins) for a couple days at least while my body adjusts itself once more to the nutrition influx, but that can't be helped. Maybe I'll finally get some sleep.

Sleep issues are a common MS symptom. The past week or so I've really been suffering insomnia (it's almost 4AM right now) as well as anorexia. Upside - I'm down to 152. Downside - it's not healthy weight loss. I'm just not hungry. Just not. It's involuntary starvation is what it is. It's got nothing to do with depression (which I fortunately suffer rarely) that I'm aware of, but maybe it does. My emotions are all over the place lately, but I blame that on lack of sleep. I'm starting to normalize, but it's slow.

I will eat if there's food in front of me, and I'll make myself eat something because I know I'm supposed to, but I'm absolutely not interested in food. My stomach growls sometimes, so I know my body is hungry, but I don't feel it. I don't feel weak from lack of food (I mean, come on, there's TONS of stored energy just waiting to be used there, body, so grab some of that belly fat. Take some from my thighs and butt, too. There's enough there to last for like a year or something. I promise you, you won't starve.), but know I need to eat.

The insomnia is the real bitch. I'm averaging about 4 hours of sleep a day. A day, mind you. That's 20 hours up, 4 hours down. Read that way, it doesn't seem like much, but to me, who is accustomed to 4 hours up, 6 hours down, it's a hell of a swing. Strangely, I'm okay with this too. It's been fantastic for my productivity. I know it won't last, so I make hay while the sun shines, so to speak, or try to anyway.

Speaking of my emotions being all over the place, I am profoundly sad at the moment (just the moment, mind - I don't let things bother me for long). I've recently found out someone I really like has...I don't know how to say this delicately, so I won't be delicate. They found Jesus. They've become one of those "YAY GOD! GOD IS LOVE! GOD RULES! GOD IS IN MY LIFE AND I'M DEDICATING MY LIFE TO HIM YAY GOD! GOD IS LIFE AND ANYTHING NOT GOD ISN'T FOR ME!" people. Now I don't mind if you're religious or faithful or spiritual or whatever you want to call it. I know that faith is a big part of some people's lives (I have my own, and it's personal, and I don't inflict it on my friends and family. If theirs differs from mine, I don't care or take it upon myself to tell them they're wrong, even I believe they may be [which I don't, but that's beside the point]. You get the idea.), but I don't believe in shunning people who once shared your life because they no longer fit in with your idea of what's "right." I know AA does this to people, and rightly so - associating with people from your old (damaging) life can set back your own recovery/addiction, so I understand the theory behind what these people do, but that doesn't make it hurt any less. Someday this person may want to renew ties with those they've left behind, and I hope if that happens those people will allow them in their life again. I'm not certain I will. I'm not big on second chances, because I'm of the opinion that if you sacrificed me once to whatever ideal caught your attention at the time, you'll do it again the next time, and my friendship is not a commodity. It's not expendable or negotiable, and though I am pleased this person found something that makes them happy and gives their life meaning and hope and fills whatever emptiness they had inside them, I'm not going to be put in the position to allow it to happen again. This is something I'd never have expected of this person, and I'm trying to be happy that they're happy, but I'm more angry than anything. I'm also angry at what this means for them. It means they're giving up more than their friends. It means they're turning their back on things they once thought and believed. Or maybe they were always a mean-spirited, bigoted homophobe and have just now found something that will allow them to be a fucktard and hide it behind religion. I don't know. But this blog isn't about that kind of thing. It's about me and how I cope, and I don't need this person in my life to do that.

But I kind of wanted them there.

There are a couple other people I've wanted in my life as this disease progresses, but they're not around for one reason or another. One has passed on, one is afraid of this illness (they won't say it outright, but I understand, and I'm all right with it), one is afraid of what I mean to them so they hide behind obligation so they don't have to offer their support, and yet another has likely been forbidden to associate with me by their spouse because I'm of the opposite gender. I can understand all these. I think they're stupid reasons (except the death one - that one is kind of...uh...not their fault) for not being there for someone you care about, but they're all justifiable and understandable.

I still don't have to like them.

There are times when I feel terribly alone in this fight, but I know I'm not. Rationally I know that. MS isn't a rational illness, and often rationality is the first thing to go when anxiety and such kicks in. I am very, very grateful for my wonderful supportive friends who would never dream of pulling the shit described above. I'm grateful for my family who is there for me and does what they can to understand and adjust to what happens to me. I know this illness is hard on people, and I try to make it easier on them by doing for myself and not complaining when things get hard. I'm not perfect - I never claimed to be, but my family and friends know when I bitch, it's legit and not just the fact that I don't want to cope with my life.

I have every excuse in the world to just sit back and let life pass me by. No one would fault me for it. I'm sick. I'm ill. I have a disease. I'm disabled. However you want to justify it, I could do it, and no one would say anything. They'd pity me and pat me on the head and bring me chocolate and roses.

FUCK THAT. I don't want pity. I will punch people in the face if they look at me, click their tongues and shake their head and say, "Such a shame." When I die (and that's an inevitable side effect of being mortal), I want my epitaph to be, "She was strong." I value strength, and the irony of this fucking bitch of a disease is that it's going to take away everything I value. My strength, my independence, my memories.

But today is not that day. Someday it will happen unless we stop it. There have been great strides in finding the cure for this disorder, but we're not there yet. Someday, hopefully within the next couple years, we'll find the cure. Because I got news for you, people. The clock is ticking, for me and others in my condition. Over half of people with my kind of MS (RRMS) develop a different kind (SPMS) within 10 years of diagnosis, and that's coming up for me. What SPMS means is that there's no relief period. Instead of slipping a little and finding a ledge to hold you for a bit, you simply fall. I'm on the ledge right now, and I've been living with this for going on eight years this year. When BG 12 (linked above) is approved, if I'm fortunate enough to be approved to be on it, it should slow the progression and give me a little more time with what passes for normal for me, but that's all it is. It isn't a cure. It's a stopgap. It's shoring up the ledge with a couple 2X4s so it doesn't crumble beneath me.

I don't know if anyone outside those I've given the link to read this blog, but if they do and you want to contribute to help the cause, my friend is currently seeking sponsors for the MS Walk in May. She's Canadian, so it's goes to the Canadian MS Society, but Americans and other countries can still donate. The donations will go to fund research on MS, and no matter which country kills this thing, we all benefit. So if you can afford a couple dollars, please consider supporting her. You have until May to donate, so if you can't do it this month, think about it between now and then. We'd both really appreciate it.

A lot of people would appreciate it.