Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

– Sharon, the muse of Gadget, and Barnum, SDiT extraordinaire

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2 Responses to “Insomnia and Creativity and Neuroatypy”


  1. 1 Kathy January 10, 2012 at 4:34 pm

    Being chronically ill is weird. For instance, I didn’t get a cold, or any kind of bug, the first four years I was truly sick. It made no sense to me, but then I talked to other people with auto-immune disorders and they had similar experiences. You would think after all these years of research (and non-research from CDC) they might be able to at least figure out why these things happen.
    I feel for you. I hope this is just part of the roller coaster ride and you’ll be on your way back up soon.
    Now off to go read your posts 🙂
    Take care…

  2. 2 Sharon January 17, 2012 at 8:46 pm

    Hey Kathy,

    Being chronically ill is weird.

    Well, ain’t that the truth! LOL

    For instance, I didn’t get a cold, or any kind of bug, the first four years I was truly sick. It made no sense to me, but then I talked to other people with auto-immune disorders and they had similar experiences.

    Yup. This is a typical thing for people with CFIDS/ME. Usually the first 1-2 years you’re sick, you don’t get sick (with “normal” things, like colds). Then some people do start to be able to get bugs, and that’s supposed to be a good sign, that your immune system is normalizing. But for some it seems to go in the other direction, and they get every bug that comes around, AND they get it worse and for longer than healthy people.

    I, on the other hand, have now had ME/CFIDS since 1995, and I’ve had maybe 3 colds the entire time. I can be around people hacking and coughing and sneezing — I used to make out with my gf when she was sick — and I never catch anything. In my case, it seems to be that my immune system is upregulated — overactive — and the theory is that this is where the CFIDS symptoms come from — your immune system reacting to things that aren’t there, or that aren’t particularly threats. It fits in with the MCS, because that is also partly an immune system overreaction. In my case, I have other signs of upregulation, such as keloiding — I have scar tissue that continues to accumulate all the time, for decades. Scar tissue is the body’s way of preventing a wound from being infected; keloids are an overactive immune response.

    Of course, now with Lyme, my immune system is also damaged and under siege and is probably underactive in some aspects, but overall, I seem to have a very triggery immune system!

    Well, that was quite the long blathery response.

    Sleep weirdness continues. After that post, I got my period, which tends to make me groggy and allows me to sleep more. For the first time in many, many years, I had four nights where I went to bed at a reasonable hour (between 8pm and midnight) and slept (on and off, but still) till morning, and was up in the actual A.M.! It was THRILLING. Then my pd ended, and I went to sleep at 1a.m. and woke up at 4 a.m. Stinker. However, I’m still trying to harvest some sort of normal sleep schedule, if I can. I went to bed at 7:30 last night and slept on and off till 8 a.m. today! I don’t think that’ll happen again soon or often, but I was so functional today, it was glorious!

    Oh, and funnily enough, I participated in both flash fiction contests again today, and for the first time ever, I did #5MinuteFiction and was not a finalist! But I feel OK about it because my piece was not crappy, but there were many excellent pieces that were better.


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