Given my limitations, do I want to write?

To get the most writing time out of a body that has Chronic Fatigue Syndrome, I have to beat the odds.

I have to find the time to write – and ensure that the brain is as ‘on’ as it gets during that time. My reality is that I get my most functional time if I alternate ‘awake’ periods with a half-hour nap every 2-3 hours.

Then I have to be organized enough so that I can figure out where I was, and pick up and write/revise from that point, without having to go back so far in reading either my text or my notes that I use up too much of my awake time – and don’t have enough to write much new stuff.

It is a constant battle, and a constant vigilance is required – which is exactly what we CFS folk have trouble with: consistency and constancy.

So I’ve been having some good talks with myself lately, observing the process, trying to figure out my best methods and procedures.

The very first question is the big one: what do I want from life, and is writing a part of that, and how big a part.

It is, for everyone, non-trivial. But most people have enough capacity that they can do several things, enough awake time that they can have multiple goals (some times way too many), and still feel they are moving forward, doing what they want to do. So the question becomes more ‘How can I cram everything into 24 hours and still get SOME sleep,’ rather than having to choose between goals.

So I left the fuzzy concept of ‘most people’ behind, and considered what I have to work with here: if carefully managed, I can, on a regular basis, create at least 2-3 usable periods of 2-3 hours each every day, by being very controlling of my own process/decisions. And not doing anything else. The system falls apart the minute I have to leave the house: each ‘out’ usually costs the equivalent of two usable periods IF I do it very carefully, and far more (into days worth of staring at the wall) if I’m careless – or simply unlucky.

And sometimes there simply is no choice, and you do the best you can, and pay for it as required: I went to a wedding today – and even in my energy-hoarding mode (DH drove both ways and I sat the whole time (instead of the normal of standing around talking to people)), I had no naps during. The bride was beautiful, the groom looked happy (I’ve known him since he was a small boy), and it was an honor to be invited. The ceremony was lovely and moving – so much food for thought there. And I very much enjoyed the wonderful appetizer, entree, and dessert buffets (which brings on a whole host of other questions – like ‘sugar’ – but how often do you get to a wedding?); so there. Wouldn’t have missed it for the world.

I hit the bed for two hours – have no memory of it, just knew I had to do it the minute I walked in the door. Then I futzed about for the awake period, KNOWING I was wasting it, and without the ability to do anything much about it except hit the bed again 2.5 hours later.

And now you have me, trying to figure out how to be as surgically precise with my time use for the next N days so I can actually get something done. There is nothing on the horizon for three weeks that I HAVE to do (except for Wednesday Yoga and church).

The second nap was my ‘thinking’ rest type: I can’t actually sleep, so I do my yoga breathing and let my mind wander. This time it decided to focus on time use. And before that on the question of what do I want to spend my ‘good’ time on – which is how this post got started.

So: given that I can count on maybe 3 periods a day of usable time, do I want to spend 2 of them writing?

I’ve been circling that question for a while. It is ontological. I reached a decision earlier this week:


I don’t want to die with this novel unfinished and having spent millions of hours web surfing and ‘educating’ myself about self-publishing.

I don’t mind dying unfinished if I did my best.

And I would rather leave it, finished, as my legacy.

But I do have to figure out how to be cleaner and meaner with my time use, because I say I want to write, but I let my CFS brain – under the influence of brain fog – make bad decisions about time use that result in me NOT writing.

I realized that, even as addled as I am, I have huge amounts of data that I keep forgetting: I know how I work. I know how I waste time. I am absolutely clear about the waxing and waning of my time and energy. I could write  Ph. D. dissertation right now on my bad decisions and bad choices.

I have finally started mining my own data for ways to improve.

I still have control of my own mind, at least part of the time. I have choice – part of the time – although I get hit very hard by ‘decision fatigue.’ I don’t have a lot of self-pity – that takes energy, but I do (blame it on brain fog if you like) take the easy way out, reach for the instant gratification, tell myself that this time I will only surf a little bit, only read my favorite bloggers, only check my email. Only play a game or two of Sudoku. Or Bee Cells. Or Solitaire. Or Tetris. (See the pattern here?)

I am taking responsibility for that over which I have control – including behaviors and actions today that will affect my ability to manage myself in the future. And I am recommitting to the concept of finishing this novel because I have asked myself over and over whether I shouldn’t just drop it and give myself an easier life for whatever life I have left, and the answer came back: ‘Are you kidding?’

Details will follow as I figure out the How.

But I have choices, and they are draconian, and I’m going to make them anyway.

4 thoughts on “Given my limitations, do I want to write?

  1. Rachel6

    This may amuse you: Karen asked about your workspace and I unwittingly pictured Kary’s! At a guess, no, your house does not look exactly like your character’s…

    I’ve always believed the best reason for writing is for the sake of writing, to go as far as I can so that I leave something behind.

    I don’t know much about patron saints, so I’ll pray to the Patron God to give you strength of will 🙂


    1. ABE Post author

      Thanks – all prayers gratefully received.

      It may be hard to see the progress sometimes, but I AM hard at work – I’m just a) slow, and b) cursed with standards I have to take time to even approach.

      The process works – mine does, anyway. Even if slow, I always know what the next step is. I’ll settle for that.

      And I do try to keep the little space I work in very, very clear – or I can’t think. I’d love to have Kary’s housekeeper – and her house!


  2. Karen Oaks

    Hi! I wish I could see your work space & observe you writing. I was a clinical behavior specialist and have my M.S. in special education so could possibly help with some ideas. First, have you considered disconnecting from the internet before each writing session? Perhaps also putting the modem in a different room so it isn’t so easy to turn back on? Also, consider getting a mini taper recorder and use the last 5 or so minutes to verbally summarize where you are and where you want to go? This might be easier than going way. Back to reaquaint yourself with where you left off. I agree that sometimes we all need to break from routine and “live” a little on the ‘normal/crazy’ side, like enjoying the wedding and dessert cart. I have other ideas, bit thats enough for now, If you want to chat more, PM me on the private ME/CFIDS site. 🙂 P.S. I understand the writing drive. Have it myself….


    1. ABE Post author

      Thanks for your thoughtful suggestions. I may send you a picture of my workspace some day. I have a separate office – converted from a walk-in closet – for the non-writing part of my life (bills, kids records, taxes). I move my little Macbook over there if I need it. I have internet both places.

      I use Freedom, a little $10 program for the Mac which blocks the internet.

      What I’m finding, though, is that all the helpers in the world can’t help unless I use them.

      “The fault lies in our selves.” I think I have resisted accepting how strong my limitations are, and how much help I need from ritual and routine, until recently. ALL writers have attention problems. MANY writers block the internet, etc. But nothing except my own determination can make me use what I have at my disposal.

      I have the timer on for 10 minutes. I had an extra long nap. I allowed myself a few minutes for lunch and checking the web. I already went to church.

      And NOW I get to write!



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