Writing with CFS and brain fog: Tradeoffs

The old me

Since last year – at about the same time of year (!), when I posted my 3 part series, Rules 1-10, Rules 11-20, and Rules 21-30 – at the height of try to get control of my body and brain so as to get some reliable regular writing output – an enormous number of things have changed.

Because I finished taxes last night, and have a few brain cells still firing tonight, I thought I would post about how things have CHANGED. Yup, changed. Improved. Become better. Gotten reliable (sort of).

The changed me – a year later, after turning pro

Here is a chunk from my journaling from two weeks ago – the writing world has become a new and happier place for me, at the same time I’m kind of falling apart (though hoping some of the physical deterioration is reversible and temporary):

“March 27, 2014 at 9:05 AM

The brain just kicked on – maybe it will last for a bit before it needs sleep.

I don’t know – it is 9am, I have been up since 7.

I am on target. God willin’ and the creek don’t rise, there will be a book out – Book 1 of Pride’s Children – this year (I’m aiming for before the end of September).

Since I turned pro on Dec. 12, 2013 (thanks for your book, also available on your website, Steven Pressfield), the joy of writing has come far more regularly, and the pain of writing has not only been manageable, it has been productive: it feeds into the writing. When Resistance to writing rears its ugly head, I have learned to look it in the eye and ask what is so important about the writing NOW that the Resistance has to try to suppress it – and I find gold where, without the Resistance, I might not even have thought to dig.

Blogging

What is the blog for? To take snapshots along the way – for myself. Maybe for others – but writing in public forces a certain external form – and the hope of coherence – on the words that pour out, sometimes making sense. I blog because I can, because I still have something to say, and because it feels good.

I am manic – I don’t know why, but I revel in it: I am happy, I am going for, achieving, and sharing my goal.

When I have a writing problem (yes, I identify them now), I go and find a solution. If one isn’t out there quickly, in my books or on another writer’s site, I figure it out, make it up, and it works. Every. Single. Time. (So far – we don’t need arrogance or moral certainty here – EVERYONE gets problems they can’t identify, much less fix. Yet.)

Living within physical constraints

When I crash – and I will, shortly: there is no way this manic feeling of adrenaline rush is sustainable for me – I will put myself down for a nap with a notebook at hand.

I hope it is because I have successfully gotten the carbs out of my body, and it is working better than usual. I have worked for this, delaying food, eating extremely slowly (so the mind has a chance to notice the body is quite nicely full, thank you), measuring out peanuts rather than letting the hand live in the large peanut container. I eat a half a peanut at a time to make them last – to stretch them out for 20 minutes. My body thanks me later: my ‘satisfied’ switch doesn’t work, and my body will go from starving to stuffed in those twenty minutes if I let it. Later, the impulse passes, I am content, and I am not wondering why I did that to myself. The CFS and the lack of energy to make good decisions can be circumvented: with habits I’m establishing, and mostly follow: go to bed at a reasonable hour. Get up and get that B1 in there, working. Pray my tiny bit.

And as soon as I can – instantly some days, two or three hours later on others, block the web and set the first timer. We – mind, body, and I – sigh, ‘Ahhh!’ with pleasure, and settle down, interrupted as necessary for 35 min. rests during which I may or may not sleep, but the sludge seems to clear out of the working brain.

Minimize the times I need to leave the house, because leaving the house is my single biggest energy sinkhole in my universe. It’s a little better if I can get right to my ‘return nap,’ but leaving the house takes so much energy it is practically a guarantee of no further anything that day. As a good habit, I fight to have doctor’s appointments, yoga, and now PT happen after 2pm. It is amazingly difficult to do that sometimes. I persevere.

Deal with pain – do the yoga stretches in the writing breaks. Find the heating pad – leave it where I can plug it in instantly. Put the ice pack in the upstairs freezer – and a towel to go around it on the couch. No difficulty in getting heat and cold = using them. Minimize the extra pain meds – they leave me groggy, too groggy to write. Deal with the sciatica with yoga, exercise, stretches, mind, all my tools.

So, back to goals:

• take care of my body, and fine-tune the brain to get some writing time. Check.

• review the writing goals: do I want to write this novel? Hell, yes. Is it on track and going forward? Hell, yes. Check. Fast enough? Working on it. Faster? Check.

• keep up a blog? So far so good.

• check in with my online friends? Check. Need to cut back on the time I use for that a bit. Yes. Working on it.

• time for envy of healthy, more successful, younger (in body) other writers? Minimize. They have their path, I have mine. Check.

Take a nap? I told you it was coming. I turn on the heated mattress pad so it will be cozy when I need it.

I took the shower I have been postponing. The shower feels so good – but takes up good time, requires that I be vertical – or think about sitting for showers which I’m not ready for – and complete the task in a linear time frame. Standing isn’t good right now, only possible.

Tradeoffs, tradeoffs.”

Progress is always seen in retrospect

If I hadn’t written it down, if I hadn’t blogged, I wouldn’t know.

The journal entry – and comparing to a short year ago – before B1, before learning to really use my pacing, before making my naps practically rituals where I turn my brain off and do mental dialysis, before turning pro, before joy – corresponds to how I feel: things ARE better, writing IS faster, and progress IS happening. Which all makes me very happy.

I may actually finish Pride’s Children – Books 1 through 3.

What tradeoffs do you have to make?

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8 thoughts on “Writing with CFS and brain fog: Tradeoffs

    1. Alicia Butcher Ehrhardt Post author

      It is so true. It often feels as if I’m struggling with the same issues still – but the WAY I’m struggling is different.

      And without the recording I so, it would be very hard to see which of my little experiments and changes are resulting in progress – so I can do more of them and fewer of the others. So often people who’ve been disabled for a long time don’t see much hope for improvement. And we are all aging at the same time, too. But things can get better, and writing is one of the things that do. Until the brain goes, what is learned for writing isn’t unlearned (except deliberately): once you can spell ‘grievous,’ you don’t unspell ‘grievous.’

      It has a lot of small pleasures, too. I just learned ‘irreconcilable’ isn’t spelled ‘irreconciliable.’

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  1. The DC

    I agree with Julia on the journal and writing things down (that,and to keep 2 long distance friends from childhood in touch) is the main and primary reasons for my oft neglected,gibberish (my blog) that only sometimes makes any sense to anyone other than myself.

    Your writing is very good,my friend-you put your heart into it,and it shows,if no one else does (and they do,trust me on that one),I myself enjoy it and envy this skill with which your words come together to express your thought 🙂

    The DC

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, DC – words are the key. Without yours, I wouldn’t have gotten to visit your world, and I have learned quite a few interesting things there, plus I have this whole image in my mind of you and your kids and your wife – living a completely different but familiar life.

      It is ‘voice’ – the people I return to have one that, regardless of how different we are, seems to connect with me. It makes me remember… but, ah! Some stories are not for sharing. But I’m smiling.

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  2. Alicia Butcher Ehrhardt Post author

    Thanks, Julia – so glad you like reading along.

    I AM mad – it’s good to have an outlet for it. We wouldn’t want it all stuck in my head doing no one at all any good. It is ridiculous to have to go to these lengths – and unbelievably satisfying that there is some way I can wring usable time out of my days. Though I feel as if I have this very cranky machine with all kinds of fuels and oils that have to be put into the gears at just the right time, or the whole thing will seize up.

    But a year ago it was far worse, and I wouldn’t have noticed how much far worse if I hadn’t done a comparison. This morning I actually got to writing words within 20 minutes of getting up. Of course, within another hour we were at First Nap, but I’m trying to just see those as indicator lights showing me where the landing is.

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  3. juliabarrett

    I think it’s important to verbalize issues, goals, concerns. Writing everything in a journal helps me find clarity in times of stress.
    I think you’ve found your own method to your madness. We all do. Yours works well for you. Above all, keep writing! Your work is exquisite!

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