10 MORE rules for writing with CFS (CFS/ME)

Rules 21-30 I live by.

*** YOUR MILEAGE WILL VARY ***

Recognizing reality is often the first step to dealing with it. My life is not run by random events, at least not the energy part of it.

The first 10 rules are here. The second 10 rules are here.

This IS me working at writing.

21.    If I can’t get to sleep at night, I can take 1/4 of a 3mg. Melatonin tablet (which, taken as I’m getting sleepy, works best). I can also take 1/4-1/3 of a muscle relaxant (Skelaxin), which helps when all my yoga stretching doesn’t quite get the twitches of RLS (Restless Leg Syndrome) out. I WILL PAY for these the next morning with between 1/4 and 1/2 day of additional grogginess. Most of the time these methods will get me to sleep – but the cost in functionality the next day is significant. Less doesn’t work. Taken too late (I told you I’m making these decisions from the very bottom of the decision quality scale), they don’t work.

22.    It takes me 2-3 days to get back on a normal schedule if I stay up too late, longer, proportionately, if I do it for more than one day in a row. Most of the time I make an actual bad choice (I COULD set an alarm, or block the internet, or turn the computer off, or put the book or the ereader game down); sometimes something occurs late at night, usually by phone, occasionally because I HAVE to finish something. The REAL RULE is: go to bed. At the same time. As I get sleepy. Like a two-year-old.

23.    When I get into the lowest energy state (zombie-like but still technically awake), and caught by something that gives my mind the appearance of intelligent occupation (pick your computer game of choice, or web-surf desperately for content), I’m amazed I can even make the decision to go to bed – after hours (literally) of being stuck in la-la land. I ALWAYS beat myself up when I do this. It never seems to help.

24.    I get into the lowest energy state, because, goddammit, I’m a grownup, grownups don’t take naps like two-year-olds, and I hate taking naps (you see the lack of functional decision-making here, right?), and I’ve allowed myself (sometimes by design) to get to that state by going along as if I WERE normal, and not planning when the next nap needs to be, and how many I need to take to get through the day.

25.    Here’s the new rule I just figured out: WRITING helps. And having it in an easily-accessible SCRIVENER file, where I can get to it before I do the next thing, helps even more. I’ve known these rules for year, have most of them written in the more than twenty notebooks that have journal pieces, my journey as I go through life, my writing notes as I work through revisions… BUT it hasn’t been until I’ve started using Scrivener – because of its ability to have so many files for a project and not take forever to open – that I’ve started adding a section to each project where I keep track of this stuff. Now, every time I realize I’m writing the same things, and nothing is new, I’m starting to use that as an indication that I’m ready to work.

26.    Writing seems to help focus my mind – that’s why I do it. But I’ve written the same words many times before – in various chunks. Slowly. By hand – which is often a good things to do (I write most of my new text longhand, and revise on clean printouts much better than on a computer screen) is TOO SLOW to capture the torrent of thoughts which flow through my head.

27.    Writing LISTS seems to help focus, as well. Brain says, “We’re doing a list,” and puts stuff out in some kind of order.

28.    Getting things out of my head, and onto paper where I can see them, counteracts the ability to hold only one thing in my mind at a time (see post about likening my brain to an old-fashioned computer with a single processor: I DO NOT MULTITASK well.

29.    Too many things in the queue leads to total paralysis – I can’t do what needs doing for one task before another forcibly takes over the single neuron I use for thinking (the other is used for breathing, thank-you-very-much, and should not be co-opted frequently: that least to hypoxia? anoxia? death? And it usually forgets to switch back). Putting the queue on paper is the trick – I’d discovered that when capturing the To Do list manually – but only the computer list allows for editing the list easily, putting things into the right order as I edit, and modifying lists items as I go. By hand that requires re-writing the list – and gets to be all-encompassing of the time, so much that list-making becomes the sole activity.

30.    I dumped this out, non-stop, in a half-hour. Feels good. Now I have to eat something – and go finish taxes. I can work for maybe another hour before Second Nap. First nap was almost two hours because I went to sleep at 5am. I am coasting, feeling almost human, but it won’t last – another one of the rules: feeling good, functional, almost normal, DOES NOT LAST.

If I think of more, I may write them down – you don’t have to read them! The first 30 fell out of my head after one of those two-hour recovery naps. I just had to get it all out of my head while I was thinking of it.

There may be more rules to come – no promises.

Copyright 2013

By Alicia Butcher Ehrhardt

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