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Wednesday, August 12, 2015

I'm gonna talk about it now.

I promised myself when I started this blog that it was not going to become mopey mopey Emoville. So I’m writing this post in the spirit of grabbing my demon by its horns and showing it to the world. Maybe doing that will help me fight it. Or maybe it’ll just get me a little leeway with my gentle readers when I don’t blog every single M/W/F or write as many words as I should.

I’ve mentioned my fatigue and my MS before. I’ve tried to downplay it, or to only give it a glancing blow on my way to more upbeat things. But I think the result of that is to make myself look like I’m failing to achieve (or even approach) my goals for… no reason. And I don’t like giving it power over me, but that doesn’t mean it doesn’t already have it.

Fatigue is a lot like depression. So much so that I don’t think I can safely say I don’t have a certain amount of depression. Fatigue is different from being tired. There are days when I feel like I have energy; I have no desire to nap, but I simply cannot bring myself to do anything productive, be it chores, errands, or writing. For chores, even the first, smallest baby step seems like a mountain, or a sheer rock face. For writing, I open my document and I read the last thing I wrote and I put my fingers on the keyboard, and then… nothing comes. I do what they tell you to do: I write nonsense or I write journal-style just to get the words flowing, but the heart isn’t beating. I can squeeze out a few drops but that doesn’t make it flow.

Fatigue is present in most people with MS even if they have no neurological symptoms or lesions, like me. For me, fatigue is crippling. I fail to fulfill social and familial obligations. I have to cancel activities that I was really looking forward to. Almost everything I do, I have to force myself to do. Except on days when that’s not true. Some days, I feel almost normal. I can do three or four whole things (or, alternatively, write a couple of thousand words) before crawling into a deep dark hole. If I’m not careful, I can spend all the energy that I have that day and overspend into the next day’s energy, leaving me twice as wrecked as I would otherwise be.

And those days are almost worse than the others, because they make me feel like I’m failing all the rest of the time.

I have a problem moderating myself, separate from MS. As long as I can remember, I’ve been inclined to follow rules that I set for myself as though they were set in stone. I think that’s because I went through a phase where having no rules resulted in me failing out of college. So, if I “break the rules,” I have no safety net. I eat a bag of Doritos, drink a 2-liter of Mountain Dew, and play Don’t Starve while Law & Order: SVU plays in the background. My therapist tells me that sometimes I can’t be productive, because, uh, I have MS. But “being kind to myself” looks, to me, a lot like breaking the rules. And the more I break the rules, the easier it is, and the harder it is to “be good.” So, being kind to myself may actually result in me losing all the good habits I’ve made over the past eight years. Can you blame me for getting mad at myself for backsliding? There are only so many things I’m proud of—I’m not going to forgive myself for losing all of them.

So, I have no energy. So I turn into a person-sized slug on the couch, incapable of doing anything else. So I get mad at myself for slugging. And that sucks more energy out of me, because (just like kids whose parents say “no” more than “yes” end up feeling like they can’t do things,) if I don’t have my own support, I’m not going to feel empowered to accomplish anything. So the next day I have even less energy. So I can’t write, or do anything else. So I get mad at myself. At a certain point, I can’t even sleep anymore, I’m too busy being pissed at myself. So, guess what? No energy. And on and on it goes.

It’s bad enough knowing that I could never support myself anymore. If Branden were to upgrade to a newer model, I’d be up a creek. It feels like I was robbed, since I was aimed at a master’s degree in architecture when I had to admit defeat to the fatigue and confusion and the lack of balance, sensation, and coordination—like the weeping angels touched me, my potential was stolen from me, and I am doomed to whatever scraps I can get now, from my tiny cage lined with wood chips. But I feel like my brain is my enemy. And when your brain is your enemy, what could an ally possibly offer?

I am trying to learn brainhax to trick myself into moderation. Make good habits of self-regulation. But when even that feels mountainous and unattainable… I feel like I’m in Inception, just falling deeper and deeper into limbo.

So… that’s where I’ve been for the last few weeks. Please stay with me. I can’t do this alone.

3 comments:

Becky Munyon said...

I'm here! I'm with you!
There's a difference between a sad mopey emo blog and a realistic blog that discusses both good and bad experiences. If you were to re-title your blog "The Miserable Unaccomplishments of Elly" and write daily posts about how they were out of your favorite chips at the store, and how some guy stole your favorite table at the coffee shop so now you can't get in the zone, or how this squirrel outside your bedroom window is plotting your demise, THEN we'll call your blog sad mopey and Emo.

Though it was probably difficult for you to write this, it's brave of you to share. No one likes to put a spotlight on their own suffering, but sometimes we need to talk about it. I find posts like this where people open up like you did to be inspirational. When someone is brave enough to talk about their suffering, then it allows me to think that I can be brave enough too.
And while you may not be as productive on your novel as you'd like, I have it on good authority that you are still doing lots of good things. There's this crazy writer named Becky whose gotten all sorts of help from you reading contracts and writing queries. Because you're awesome. There are also several kittens out there who are very well taken care of.
I'm sorry for what you're going through. You're brave and strong, and I know sometimes you probably don't want to have to be those things, but you are.

And I take it back. You cannot change your blog title to "The Miserable Unaccomplishments of Elly" because I'm going to use it myself. Only Becky, instead of Elly. I'm not giving up a title that good. My first post will be about how I went to the store for cereal, and bought tea instead. Now I don't know what to have for breakfast. I will manage to rant about it for several paragraphs.

Elly Conley said...

OMG, Becky... Your comment is just so great. So So So So great. I MAY have to use "The Miserable Unaccomplishments of Elly" as a post title at some point. OMG. I'm LOLing IRL. BBQ. WTF. =D

Also... thanks for your warm fuzzies. I put them in a locket to wear around my neck and peek at from time to time. <3

Codeface said...

Powerful words sister! Bravery comes in many forms. Achievement comes in many forms. You contain multitudes!