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

QuickPress: Natural Disasters & CFS/ME

The US Centers for Disease Control and Prevention (CDC) has published a long paper that seems to be based on a conference about the adverse effects natural disasters have on people with chronic fatigue immune dysfunction syndrome (CFIDS, also known as myaglic encephalomyelitis, or ME, and chronic fatigue syndrome or CFS). This is quite relevant to my recent post about how I developed PTSD due to a natural disaster two years ago.

This is a lengthy PDF you can download with multicolored graphs and charts and bullet points, oh my!

The first 46 pages are not that useful and are somewhat annoying, but there’s some validating stuff after that. For instance, it lists various physical, cognitive, emotional, and behavioral symptoms that commonly arise from stress or trauma. The heading for one page is “In people with CFS, a natural disaster worsens all symptoms of CFS.” Below that are bar graphs that show relevant data.

Perhaps two of the most important points it makes are these:

1. Any form of stress is harmful — including long-term outcomes — to people with CFS,

and

2. People with CFS usually function better in an emergency and then get much sicker after the adrenaline wears off. (Referred to in the CFIDS world as “crashing”).

In fact, I’m going to type out the page that addresses this because I think this is a hard concept for most people to grok: A hallmark of CFIDS is “post-exertional malaise,” which means that starting about 24 hours after any type of physical, mental, or emotional exertion, the person with CFIDS gets much sicker (crashes). These crashes can last for days, weeks, months, years, or forever.

It was hard for me to understand when — many years ago — my best friend’s house burned down (she also has CFIDS), and I was also displaced at the time, and we both totally overfunctioned. In fact, she was more functional than I was, and her situation was much worse. We both did things we could never normally do, and we joked about horrible disasters being the cure for CFIDS. Of course, that did not turn out to be the case.

Page 57, under the heading, “Essentials of Disaster Response for Patients with CFS,” it says:

• Animal studies demonstrate that the stress response takes priority over sickness response
• In clinical terms this means that people with CFS will often perform normally in times of life-threatening emergency
• Data suggest that the big risk for CFS patients is that disasters can trigger long-term declines in functioning.

So, there it is, folks. People with CFIDS have been saying it for decades, but now the CDC has published a document about it. Hopefully this will lend our experiences more credibility in the minds of our health care practitioners, our friends and families, and the general public.

It’s not a bad reminder for us to tell ourselves, either. Even though I didn’t lose power due to the storm, I have been more than usually exhausted, in pain, and cognitively impaired since the weekend. I have been trying to power through it (you may have noticed how many blogs I’ve posted, although they were not particularly coherent, pithy blogs), because I am ambitious, bored with being sick, and tend to judge myself harshly for “not being productive.” Good time to remind myself of what I so often try to convey to others: Being sick is a full-time job. When you have to deal with a stressor, like a PTSD flare, you’re putting in overtime. The illness doesn’t like that, and charges you payback. So says the CDC.

– Sharon, the muse of Gadget (floor potato), and Barnum, SDiT, anti-anxiety dog and bed potato