Making virtue of necessity: the first 10 rules for writing with CFS (CFS/ME)

The rules I live by.

*** DO NOT READ THESE RULES IF YOU ARE EASILY OVERWHELMED *** I AM NOT RESPONSIBLE FOR YOUR CONSEQUENCES *** YOU HAVE BEEN WARNED *** YOUR MILEAGE WILL VARY *** DO NOT ARGUE WITH ME *** YOU DON’T HAVE TO READ THEM ***

Like physical laws, like gravity, especially, these laws are immutable.

Finding my laws – and exploiting them for MY benefit, is how I survive. Which I do, erratically.

Anything else is not only really stupid, but, like gravity, results in large crashes when I fall.

I have figured out these rules in detail only the last year or two, because I couldn’t afford to know them – and their immutability – before then.

I have the scientist’s orderly mind, and the drive to understand things that accompanies it. I would have made a decent scientist. Oh, wait – I did – for thirteen years.

I want to write. I am very grumpy when I can’t write.

1.    If I am playing video games, trolling the internet, or reading far into the night, it is not for pleasure. It is because my non-functioning mind can’t make decisions. This actually has a name: Decision Fatigue. It is part of the dreaded ‘brain fog.’

2.    The only way I can make good decisions is to be rested enough. Yes, I can tell. But only, Catch-22-like, if I ASK myself – and I’m often too non-functional at the time to remember that.

3.    The only way to reset the decision-making process, for me, for now, is to lie down.

4.    The best recovery sleep is one taken just as I’m getting tired – OR COLD. It is at least 35 minutes long (the extra five is to settle down). It takes three positions: 1/3 lying on my back, 1/3 on each side. It must be: as dark as I can manage the room; horizontal; warm enough (lowering body temperature is an indicator); completely dark (use eye mask if necessary); completely silent (use ear plugs, and if the neighbor is using his industrial leaf-blower – way too often – I must add to the earplugs industrial ear protection: the earplugs alone are not enough). There can, obviously, be nothing else going on, no TV, audiobook, music. Certainly I can’t talk to you on the phone and count it as a Rest.

5.    During the nap I actively try to do all my rest-and-meditation tricks (true meditation is beyond me, but I sometimes do a little praying as I settle down, especially if anxiety is a problem (it often is)): I do three yoga ‘surrender breaths’ at least in each position, more if necessary, in sets of three. Each of these breaths has me filling my lungs to the utmost, holding a moment, and then ‘letting the breath fall out’ by opening my mouth and just releasing all tension. I – not necessarily yoga practitioners – then use all my muscles to push every bit of bad air from my body. I think this compensates for somewhat shallow breathing the rest of the time – junk in the air in the lower alveoli? – but what do I know?

6.    If I am tense or twitchy, I use those first five minutes to do all kinds of stretches – some I’ve invented myself – all lying down (unless I have a touch of sciatica – I’ll discuss that separately).

7.    It doesn’t matter if I had a nap 40 minutes ago (this part I hate). If I need another one, I need another one. Typical days without too much stress get by on two, are better with three. If I am recovering from a bad night, it can take four or five. If recovering from overdoing it (described below), pushing my limits, hitting the wall, losing it – whatever – this process WILL go on for days – regularly as many days as I overdid it; if I am VERY observant, I may be partially functional sooner – but can easily lose it again if I assume I’m back to ‘normal’ too soon.

8.    My ‘normal’ is not what ‘regular people’ call normal. You’ll see. My normal means I can get through a day with only two or three required half-hour rests – and actually get something done. (Getting something done will be described later.)

9.    I cannot work through or power through my little ‘problem.’ It would be like driving a car without gasoline, or better still, without a required oil change that is long overdue.

10.    I can choose to try to bend, break, or stretch these rules. Another one of my little ‘bad decisions.’

More rules to come.

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11 thoughts on “Making virtue of necessity: the first 10 rules for writing with CFS (CFS/ME)

  1. s

    Thank you for this post.
    I have just been diagnoised with ME and live in the UK.
    It was lovely to find your blog, which is so clear. I’m trying to get my head around having ME and realising that it is something that wont happen while the ME is flaring!
    Catch 22 🙂
    Thank you again for your post.
    Best wishes
    Susan

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    1. ABE Post author

      I’m sorry about you having ME – I wish they could find out how we catch it and how to fix it. Trying to get healthy(healthier) while working in the dark gets very discouraging.

      Meanwhile there ARE a lot of things you can learn to manage it as well as you can. I learned a lot of behavioral techniques from several books and websites. Cfidsselfhelp.org is the most organized and systematic place I’ve found online – they even run a course.

      Observe your own patterns. Try things – figure out what works. Then it’s a small box to live in, but at least you know what you can and can’t do. I think I’d have gone mad if I hadn’t.

      About the post, yeah, thanks – sometimes things are my own fault for being as bad as they are.

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  2. Reva

    I completely get point one. The number of times I sit on Pinterest or looking at blog posts I want to read but can’t focus on, or sit and milk cows and make ice cream on a cyber farm knowing I’m doing it out of pure brain drain yet can’t make the simple decision to go to bed.

    I’m starting to wonder if there’s a way I can take naps at work 😉

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    1. ABE Post author

      When I was still able to work, I had my own office, and enough floorspace to be able to stretch out. I bought a simple foam chair that folded out to a ‘spare bed’ – very light weight (actually not much good as a chair), barely long enough and wide enough for a human. That, plus a pillow and blanket in a file cabinet drawer, and I could take that 30 minute nap instead of lunch that made it possible to function another couple of hours.

      Also, at the time (I don’t seem to see it any more, or maybe it just applied to certain types and sizes of employers), according to some NJ work rule, there had to be a ladies’ room with a couch or a bed. I got good at stretching out for ten minutes. You just have to get over the fear of looking foolish, or of worrying your coworkers will think you’re slacking.

      The fear of appearances was one of the first to go – I couldn’t afford NOT to rest. Now, I will sit on the floor if I have to, say, while waiting for customer service in a line. It gets an interesting reaction – I can’t care, because the alternative is leaving and going home.

      You do what you have to do. Mostly I don’t go out, but sometimes I have to make choices.

      If your workplace understands how much more you can give after a rest, they may have less trouble with you doing it. Americans with Disabilities Act, anyone? ‘Reasonable accommodations’ can include rest.

      If that had been possible – ie, successful – for me, I would have loved to keep working. I miss work.

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      1. Reva

        I wish I could find a place to curl up and nap for my lunch break! You must have had a wonderful supportive workplace! I’m treading a little carefully at the moment with mine, but I’ll keep the idea in mind with some of my planning.

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        1. ABE Post author

          Fifteen minutes wrapped up in your winter coat sitting in your car with the seat as flat as it will get – I’ve done it – is enormously better than fifteen minutes frantically working at your desk.

          For long trips, I prepare the back of the minivan so I can lie down. I can’t tell you how many half-hour naps I had to take to get from NJ to Pittsburgh or Troy, NY – but the required break, every two hours, kept me safe on the road. For me, the rest has become the required restorative. It’s like plugging my failing battery in.

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        2. ABE Post author

          I think I need to re-read my own posts. 🙂

          I had before-church nap; dressed quickly, drove to Princeton by 3:45. Parked in the Handicapped spot by the Library (where I’m allowed to park). We practiced for 45 min; then sang the 4:30 Mass. Drove home (30 min each way), and now I’m headed for after-church nap.

          You do what you have to do – and hope it’s enough.

          What I gave up long ago was feeling guilty for needing what I need.

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  3. Alice Audrey

    I’m not quite as drastic, but I also get decision fatigue, and find myself surfing the web in a way that others would consider entertainment, but for me is just trying to cleanse the mental pallet. I try to do at least two deep breaths a day, but it’s not on the order of your meditation breathing or power napping.

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