Comparisons

Here are some examples of who I was before I became ill and who I am and what I deal with now (for the past two years of being sick).  This isn’t the full list of differences, and it leaves out most of my symptoms, but it’s a start.  Some of these will be familiar, since I’ve talked about them in other posts, but I thought the format of comparisons might be helpful for some to see and understand more clearly.

Mental.

Then…

I arise at 7 AM, go to a full-time university course-load, work 20 hours a week at one job, squeeze in fifteen translation hours per week, plus my homework, plus my novel-writing, and collapse into bed around or just after Midnight.  All mental gymnastics work, multitasking, holding two languages in my head at once, juggling course-loads, deadlines, priorities, and so on.

Now…

I have three hours of non-stop mental work available to me per day.  If I use it all at once, then it takes me days to recover. If I pace myself and spread it out, do one hour of writing in the afternoon, take a long break, then do another hour or two of something else in the evening, then I’m usually fine.  I have to pace myself, take a lot of breaks.  Something like role-play (collaborative storytelling) is slightly different because I don’t share the whole load, and I have time to wait for replies, but I can no longer multitask while I do it.

(And since this is a writing blog,) Then…

Creating new ideas, new characters, new worlds, intricate plots that interconnected and made sense was a breeze. True, there were up days and down days, but —

Now…

Well, nothing comes out of the woodwork anymore.  Creating new characters is exhausting, like giving birth.  Holding whole novel-length plots in your head? Well, let’s just stick to scenes.  Problem-solving is infinitely more problematic than you remember it being when you can barely hold two thoughts in your head together….

Then…

I could drive. I could read in the car.

Now…

Now I can’t. It’s a sea of moving panic. I can’t focus on anything moving around me.  I can’t judge speed or distance very well. I have to fight the inexplicable feeling that oncoming traffic is going to kill us and that I should tell the driver to stop the car NOW.  I have to focus the entire time on just appearing normal, natural, and on watching the people in the car with me or looking above the city-line up into the mountains. There’s nowhere to run and hide.  It makes me nauseous. There’s no way I can manage to read. There’s no way in hell you’re getting me to drive.

Emotional.

Then…

Stressed? Fine, no problem. It’ll pass. You’ll get this done, it’ll be over soon.  Sad? Food and sleep will make everything infinitely better.  Discouraged? You can do it, you can conquer anything, you can do anything. You can endure anything, sheer force of will. Negative thoughts? A brush of your hand, you can clear them away, like cobwebs. You just have to make the effort.  You need little help because you’re a young, headstrong, independent, accomplished woman who is out to conquer the world.

Now…

Everything’s a battle. Take back control of your hijacked body. Fight the constant panic attacks. Everything’s ten times harder because you have to think first before you can do, and oh yeah, your brain is filled with cloudy, murky, mush so good luck on thinking rationally about anything. Progess? Molasses slow, but look for it, it’s there.  Hold fast to it, it’s glimmering like starlight in darkness. You can no longer endure everything off of sheer willpower. Maybe it was a delusion to think you could fix or do anything you wanted just by willing that you could. You’re too exhausted to make that work now, anyway.  Your head slips beneath the water more and more often the longer the day goes on.  But you can’t stop fighting, you can’t stop treading that water, because the moment you do, it’s hell.  And oh yeah, say goodbye to the “independent young woman” ideal, it was never God’s ideal to begin with, or else He would have given us each our own planet to live on.  You need help; it’s time to learn what interdependence means.

Physical.

Then…

I was a dancer, a martial artist, and even when not doing something rigorous, I could be on my feet and walking all day long, (let’s say 8 hours) without wiping myself out.  I could cart all my groceries home by hand on sheer strength and endurance. I lived as a pedestrian in college, in France, and in Armenia. I’ve never owned a car.

Now…

I take 20-30 minute walks every day. If I go longer, I pay for it severely one way or another.  By the time I’m done, I’m dizzy, have vertigo, am out of breath, but at least am feeling accomplished.  If I want to do something like, say, a dance party with my friends, I have to “save up” for it so I can dance in place, then I pay for it severely the next day. Sometimes it’s worth it, sometimes it’s not. Oh yeah, and there’s no way I can carry anything but myself.

Then…

I could get seven hours of sleep and be just fine for my day.

Now…

If I get less than ten, I’m miserable. My body is pretty much shot. I can still cope, but then again, we’re resilient enough to cope with just about anything. Yay?

Social.

Then…

I could maneuver crowds, scan faces, search out who was lonely and needed help, go and sit with them. I could read body language better. I could talk at a regular pace, think before I spoke, guess at what someone’s reactions might be if I worded something in a particular way.  I could control my maturity level, silly or serious, depending on my read of what  a situation called for.  I’m an introvert, so social situations have always been draining to me, but then it was at a manageable level.

Now…

I’m doing well if I can manage to say what I mean.  Everyone now speaks faster than I am able to compute. If I manage to sneak words in to someone else’s conversation, they are almost always off-the-wall, off-the-cuff, thoughtless, and borderline silly because there’s no time for me to stop and think about what to say, and my head’s so murky that’d be near impossible anyway. When I say silly, think “twelve year old”.  I’ve lost ten years of maturity in social situations.  Yes, I feel exactly like how I coped with social situations when I was 16 years old, minus the murky brain of tangled thoughts that I have now.   To cope, I try to stick to asking people questions and keeping other people talking. Questions are easier than explanations or answers. About the only things I can say well are things I’ve said before, things I’ve practiced saying.  I can’t scan a crowd; the faces blur and I panic.  Crowds moving around me make me want to run, flee the scene.  The longer I am in a social situation, the more drained I become.  I can’t think rationally.  I can’t figure out if what I said was wrong or right or even how to feel about it.

If I want to survive something, say, WorldCon where there are thousands of people and things everywhere, the best I can do is take a guide, a companion. Someone to protect me, lead me about, make my rational decisions for me, someone I can hide behind. They handle everything else, while I handle myself. Otherwise? I’m cooked.  Yes, this includes something like a public campus, library, or Church.

.

And finally,

Then…

Being drained means tired, wanting to take a nap or go to bed early.

Wearing myself out means that I’ll be able to sleep easily once I get to bed.  Sleeplessness means I didn’t get enough exercise during the day or I have other things to think about.

Now…

The more drained I become, the farther downward I spiral inside myself.  Spiraling, spiraling, until I’m trapped inside my own head and I can’t come out, I can’t speak, I can’t compute.

Wearing myself out has no correlation to how well I can get to sleep at night.  I can be utterly spent, exhausted, but my body doesn’t cross the sleep-threshold.  Exercise or thoughts in my head no longer matter. It’s like my body’s simply forgotten how to press that button or flip the switch.

Advertisements

2 responses to “Comparisons

  • Lindsay Buroker (@GoblinWriter)

    Hey Laura,

    Thanks for popping in to read and comment on the Sicarius story!

    I don’t know what all you’ve tried (research, diet, medications, etc.), but I saw your post on audiobooks, so let me plug a couple of podcasts with a lot of Q&As and interviews on health topics, especially autoimmune diseases.

    http://chriskresser.com/category/podcasts
    http://undergroundwellness.com/radio/
    http://robbwolf.com/podcast/

    I may have mentioned it before, but I was an utter wreck in my 20s and originally got into blogging and figured out a way to make a living online because there was no way I could work a regular job. The doctors were useless as they all just treated symptoms instead of having a clue about how to figure out the root problem. None of my symptoms seemed to have anything to do with the gut, but, through a heck of a lot of reading and research, I finally found my way to a naturopath who tested me for food allergies, bacteria and yeast overgrowth, and let’s just say that my gut was a wreck. Among other issues, I wasn’t absorbing the vitamins and minerals in my foods, which led to all sorts of deficiency problems (I haven’t read a lot on CFS, but noticed a lot of the symptoms you listed are also symptoms of vitamin deficiencies — the B vitamins in particular, which we burn through when we have stress responses, i.e. panic attacks — even consuming caffeine will get mine low).

    I ditched gluten and dairy immediately (that is not necessarily everyone’s problem, but gluten, in particular, is very common and is being linked to all sorts of autoimmune diseases, even brain-related stuff) and that fixed me up maybe 90% of the way. I later found my way to the paleo diet and do a high fat, low carb, moderate protein version of that. It, and some supplements for a couple of lingering hormonal issues, have been the final pieces of the puzzle for me. (I never thought I had neurological issues, but I was amazed at how much sharper I became on the higher fat diet — we’re talking mostly coconut oil and animal fats from grass-fed/pastured critters, not soybean/vegetable oils — and my mood mellowed and nothing much frazzles me any more. Though CFS wasn’t my “thing,” I’d also had a lot of panic attacks and ended up in the ER with high blood pressure and palpitations and all that scary jazz. Nothing like that happens any more, though if I’m not good with my diet — it’s hard when traveling — I will get some of the stress-response symptoms and have trouble sleeping.)

    Anyway, it’s not like you asked, but I’m not sure I’d still be alive if someone hadn’t pointed me in this direction years ago, so I can’t help but share. Even if you’re not into dietary changes, if you can save some pennies, you might get some short-term relief out of b-complex shots (taking them in pill-form never seemed to do anything for me–if I couldn’t absorb the vitamins from food, it wasn’t going to happen from pills either). A naturopath might be able to prescribe the stuff so you can do the shots at home (a lot cheaper). Coconut oil, too, is awesome to add to the diet — I forget the why but the MCTs are rocking for the brain, and there are interviews and pubmed articles talking about how people have used it to put Alzheimer’s into remission). Anyhoo, good luck. Stop by any time. 😉

    Lindsay

    • Laura

      Thanks for your comment! Wow, that’s scary. I’m glad you’re still alive and that you were eventually able to figure stuff out. It takes courage to forge ahead when doctors aren’t helpful.

      This probably explains why you wrote Sespian so well in Book One. i was actually wondering if you’d had firsthand experience with inexplicable+chronic illness when I read EE, though I wasn’t really sure of an appropriate way to ask. *amused* You’d said you made a living through blogging, but not what brought you to it, in any case.

      Thanks for the links! I’ll definitely check them out.

      I’ve heard of others who’ve had similar findings about gluten especially, yeah. And doctors have checked my blood several times over to see if I’m absorbing vitamins all right. The only “deficiency” I have is in vitamin D, but even that is still within acceptable levels. I have gone on vitamin B complex shots just for kicks though, since it seems to help so many other people with similar cases, but I didn’t notice any difference with the shot. :/

      I’m gearing up mentally to go back to do a few more tests. I’ve heard of bacteria infections in the blood having these similar symptoms, too, and if bacteria infections in your gut did all that unpleasantness to you, then, gyeh, I guess it won’t hurt to get a few more tests done, or at least to explore more options.

      And yeah, my grandma and I like to joke about coconut oil as a wonder drug. We’re currently using it to help my grandpa who has dementia, but I suppose I should stop joking and start tasting, too. haha

      Thanks for taking the time to stop by!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s