Friday, April 18, 2014

Spin On

It's been seven months to the day since my last blog post. I'm still here. Just...busy. As I said in my previous post (all those months ago), there are things besides blogging which I devote what energy I have to. It's not that I don't want to blog, or that I have nothing to say. It's just that this little corner of the Internet isn't very high on my priority list compared to other things. I've often thought about things I'd like to put here - thoughts and feelings and the like, but again...when there's time, there's no energy, and when there's energy, there's no time, so...yeah. This blog gets neglected. If I have any regular readers, I apologize to you for the long absences.

Energy is a big, big thing for me. A friend pointed out this article to me about the Spoon Theory, and we've started to use the phrase "I don't have any spoons left" in our house. It's been helpful. Things like "be sure and save a spoon so we can ______" have become a regular part of conversations. The article is worth a read, even though it's not directly about MS. The principle is the same.

There's another thing, too. I figured I would experience it sooner or later, but it really crept up on me and came as something of a shock when the same friend pointed out to me that what I was dealing with was textbook clinical depression. I was really surprised. Not because I had any delusions of "oh, that won't happen to me," but because I thought since I knew what to expect with my condition, I'd recognize it if it started to affect me and be able to stay ahead of it. Realizing/recognizing/accepting there's a problem is the first step toward recovery, right? Apparently that only works if you know something is there. I didn't even see this coming. I knew something was going on - it's not like me to want to do absolutely nothing but watch trash TV. I stopped eating, slept only when I couldn't keep my eyes open, didn't care about anything beyond caring for my pets. Feeding them, letting the dog out and cleaning the litter boxes were pretty much the highlights of my days there for awhile, because I may neglect myself with not eating or bathing (I know, ew, but remember?), but unless I'm completely unable to move, I will not neglect my animals. I'll die first.

I talked to a few people who suffer from clinical depression and other mental illnesses who deal with what I was feeling on a day-to-day basis. They gave me some suggestions for dealing with things, and I feel myself normalizing. More than once my doctor has suggested an antidepressant medication, and I've refused, and will continue to refuse. It's not that I don't believe in them - I know they help many people and are useful tools - but I don't believe they're right for me. I've been on them before for other reasons, and I don't like the way they make me feel. Besides, I take enough pills as it is. As long as I know what it is I'm dealing with, I know how to fight it.

Yeah, it's hard, and yeah, I catch myself slipping, but for me it's all about getting around that little inner voice that puts up barriers and lies about everything. For me, also, it's about "can't" vs. "won't." Can I eat, or won't I? Which is it? If it's "can't," I tell the little voice to shut the hell up and get something to eat, even if it's just a piece of cheese or a slice of bread. If it's "won't," that's different. I'll get something later or ask my husband to bring me something home/make something. Can I not take a shower, or do I just not want to? If I can't, fine. I'll do it later. If I just don't want to, I tell myself to shut the hell up and get my stinky ass in the shower. Am I really too tired to _____, or am I just being a whiny little bitch and using my condition as an excuse not to do something? That's really what it's all about for me. With that and persistence, I'm slowly climbing out of the hole this depression shit has buried me in.

I'm very lucky to have the supportive and understanding friends and family I do. I realize that. I can't express the gratitude I have for the people in my life who help and support, but even they can't help when reality hits me square in the face. There are times - more often now than they used to be - when the reality of my condition is all too apparent.

I'm going to go ahead and put a Whiny Little Bitch Disclaimer here. Things are about to get really heavy right now, so WARNING: DRAMA AHEAD. Stop here if you don't want to read my woe. For those who don't mind, read on.

I realize MS is a degenerative condition. It's right there in the description - "degenerative." That means, as time passes, things are going to get more difficult and the condition will steadily worsen. Now, I'm extremely lucky. I try desperately to remember that. My condition was caught very early. I'm on excellent medication. I have the best doctors anyone could hope for. I'm regularly monitored and have a stellar support system. I was in decent physical condition before my diagnosis, and have a background in gymnastics, strength training, and martial arts. I have everything someone in my condition could hope to have. There is hope. Lots and lots of hope. That they'll cure this illness in my lifetime is a big one, and there have been some amazing advances in just the years since I've been diagnosed.

I try to remember all those things when I drop something because my hands don't work. When I struggle to make a grocery list because I can't remember how to spell something or the word I want. When I can barely write because I can't hold the pen very well. Lately things have been happening to me that make it very obvious that I am faltering, and holy fuck for fuck does that scare the hell out of me.

There, I said it. It's right there, in black and white, on the Internet for everyone to see. I am fucking scared. Those who know me would be surprised to hear those words from me, because I never say it. Why should I? What good does it do? So I'm scared. So what? Scared of what? What is there to be frightened of?

Well, there's being a burden, for one. A lot of people fear that. I suppose my big fear is a facet of that. I've been independent all my life. I take care of myself and others, and it's becoming apparent now that I can't take care of myself, let alone anyone else. Fuck, I can't even be left alone for more than a few hours at a time, because things get too hard to handle by myself and I might hurt myself, or if there's an emergency or accident I can't manage on my own anymore. I need a fucking babysitter if my family needs to go out of town for more than overnight - we have to ask someone to come and stay with me or ask someone to check on me, "just in case." So my family doesn't worry about me here by myself/on my own. (And this annoys the living hell out of me - that my friends and family have to think about "what about Stacy" before they can get on with their lives/plan activities. I realize they want to include me in things, but honestly I'd rather they not consider my involvement at all than make any special consideration for me. Maybe that's a pride thing. I don't know. "We can't go to the Grand Canyon - Stacy can't make it down/deal with the heat/be out that long." SO THE FUCK WHAT! Go without me! Enjoy yourselves, for fuck's sake! "But we don't want to go without you!" But I want you to go without me! Fuck! I don't want anyone planning anything around me because I have a fucking incurable condition, my God! / prideful rant)

I can't cook a meal alone, because my hands and arms are often so fatigued that I can't put a pan in the oven or put a skillet on the stove without dropping it. I can't take a load of laundry to the washer or out of the dryer because getting it to and from the laundry room exhausts me too quickly, despite the furniture to rest on between rooms. (We're looking into a new house this year, not only because our current neighborhood is getting really annoying/growing by leaps and bounds, but because the reality is, I need a single-level house with an easier layout to navigate than our current one. Plus, this house is older and not wheelchair accessible/friendly, and while I'm not in a wheelchair yet, if they don't cure this soon, there's a very good chance I will be within the next five to ten years, and if I'm going to have any energy whatsoever to help with/deal with the stress of a move, then that needs to happen this summer. Next at the latest. What was it I was just saying about how I don't want to be considered when it comes to things? This one is okay, though, because we were planning on moving closer to family elsewhere, anyway, so...yeah.)

I can't be alone in the house and take a shower. It's too dangerous. I can still drive short distances, but anything more than thirty miles is too far for me anymore. I can barely clean my own house.

I may not have a terminal diagnosis, but that doesn't make me feel any less like I am dying.

What makes me me, the person I was, everything I am, is slowly being taken away, piece by little piece. I am dying, and there's nothing I can do to stop it.

Most of the time when shit happens, like when I spill something or take extra time doing whatever it is that used to be no trouble at all, I just shrug it off and carry on, because this is my reality now. I can cope with an ever-changing environment. It's how I was raised. But sometimes...just frightens me.

As I said, I know MS is degenerative. I know things are going to get worse. Things are already getting worse and every day there's something new. They're going to get harder, and soon there won't be any respite from the changes. From the "bad days." Someday, every day will be a "bad day."

But to quote Aragorn in Return of the King, it is not this day. As Nick Fury so wisely puts it in The Avengers, "Until such time as the world ends, we will act as though it intends to spin on."

There are a lot of quotes I take solace in of late. One is the Litany Against Fear from Frank Herbert's Dune:

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing....only I will remain."

Another is from an interview with an actor I deeply respect, Tom Hiddleston: "Never stop. Never stop fighting. Never stop dreaming."

Now, I consider myself a realist more than anything, so the "dreaming" part doesn't really apply to me the way he intends it there.

But I do dream that every day I wake up will be the day someone goes to their lab to find their experiment a success, and the cure for this disease is found. So, in a way, I guess it does apply to me. Until then, I'm left with the fighting part.

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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!