Writing with CFS: the Lookback Period

Know thyself

I’m baffled yesterday, I’m baffled today.

Don’t I have this ‘process,’ this self-discipline, locked down? Don’t I know how to get myself from out of bed to butt-in-chair – and writing?

Well, yes, but that is the strength of the mental situation we call brain fog: you can’t recall what you know as well as you need to.

Lost time, lost IN time

Time passes for us brain-fogged folk. Without any consciousness of it. We turn around, and realize we’ve been staring at the wall/watching TV/surfing the web (which we said we weren’t going to do, but then decided to just ‘take a quick look’ at).

I know that happens for many people who are otherwise well, and are wasting time or procrastinating, or even simply unfocused right now.

But, for myself, I have been missing a red flag: the Lookback Period.

The Lookback Period

‘Also known as ‘how long something that you do will determine your future ability to do anything.’

I sang for the Easter Vigil Mass at the Princeton U. chapel. It was a big deal. This year I did ONLY that service (last year I did Holy Thursday, Good Friday, Easter Vigil, and Easter Sunday). I left home at 5 pm. I took a nap in my car, parked near the chapel, from 5:30 to 6 pm. We rehearsed from 6 to 7:30. Mass started at 7:41 (sunset), and Fr. Dave took everyone (but me – I don’t walk well, so I don’t process) outside for the ceremony of the New Fire and other special things for the Vigil – I took a nap in the darkened chapel – maybe 10 min.

Then, after a very long service with EVERYTHING in it, we all went to PJs for a meal.

Do you see the problem yet?

I had a wonderful time.

I got back home at 1 am.

I couldn’t get to sleep – for a very long time – too wound up.

Sunday, after I finally got up, it took forever to get to the point of being able to write a few words of fiction – out of having a whole, free day, with no other requirements from anyone (I did pull a few weeds, do a very short bike ride, talked to a neighbor I haven’t seen in months). Annoying – I had hoped to finish a scene.

And this morning I had the same trouble: getting to the point of writing has been like pulling teeth – in spite of getting a very good night’s rest.

At which point, after my brain finally turned over, I told myself, ‘But of course!’

Thinking with brain-off not usually good

Most of the people with CFS I talk to – especially the online ones – know what I’m talking about: the payback period for unusual exertion – of ANY kind whether happy or sad – is DAYS at the very minimum. Not ‘one or two good nights’ sleep.’ DAYS. Sometimes many, many days.

During that time, we crash. We are far less functional than usual, even if the circumstances are ideal. If the circumstances are not ideal – and we have to function, or worse, have to deal with a crisis, it is amazing how non-functional we are. And, if we cope somehow, the payback period can extend further, into the MONTHS.

So, I have an explanation: I failed to consider the price I would have to pay, but the tax collector is here, nonetheless.

It is not that I have forgotten my process, suddenly gotten lazy, slacked off, am procrastinating – all those things which require their owner to buck up and get to work and stop futzing about.

The Real problem

I literally can’t. Whatever extra junk is in my brain because of my wonderful Holy Saturday cannot be ignored. It must be lived through.

And I have to be very, very careful not to make it worse.

And I have to not blame myself: I CAN’T buck up and fix this. I can only get EXTRA rest, try not to blame the victim, and LEARN something from the experience, so it doesn’t catch me flatfooted – again – next time.

Would I do it again? In a heartbeat. Those few normal things I can do keep me sane.

The Real solution

But I can cut out the self-flagellation that goes afterward. I can realize it MAY cost me four writing days to expend that much energy at one go. I can stop wishing it were not so. And I can remind myself a lot better to do the most conservative version of my functioning program: go to bed if not functioning, even IF I just got up an hour ago. Repeat all day at short intervals if necessary.

Don’t fight the restorative rest periods. Be willing to take more of them – they always help. Take them sooner – even when the taste of freedom I had Saturday was like manna from Heaven. And be prepared to need all my tricks, and extra tricks, for DAYS after my extravagant spending of what I don’t have.

And, above all, don’t yell at myself for not being able, instantly, to get well. If I could do that, I would have done it 24 years ago.

Going to bed now, even though I don’t want to. Even though I finally sort of woke up. Because I am not at my best, and the only time I can write fiction is when I am, and it won’t happen unless I go do what I know I have to do: rest.

Updated:

I did those things I’m supposed to do. Rest and B1 and food and de-stressing and…

And the brain kicked in for a little while, and 15.7 got a few more polished words than zero. Not many, but, since technically the four-day lookback period isn’t over until Wednesday – and maybe not then because I have PT on Tuesday and an MRI on Wednesday, and then PT again on Thursday (each of these things requires that I get dressed, leave the house, drive somewhere… You get the point).

I will hit the extra rests each day, before AND after, and hope for the best. The other path out of this is one I refuse to contemplate: quit writing.

Do you get ‘lost in time’? What helps?

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5 thoughts on “Writing with CFS: the Lookback Period

  1. clairechase51

    It is always an education to read your posts. As a nurse, I especially appreciate it. What a pain that doing something like singing at Easter Vigil takes away days to recuperate. 😦 You help me be very thankful for things I take for granted. May things be better tomorrow. Hugs!

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    1. Alicia Butcher Ehrhardt Post author

      It’s very hard to take some diseases, especially the ‘invisible illnesses’ like CFS, seriously – unless you have it, or know someone personally who has it. Heck, doctors tell many of us – in this day and age – that it is all in our heads. Or that it can be cured by exercise or a positive attitude. The exercise causes unbelievably bad crashes – and I don’t think I can get me a more positive attitude. So the PWCs (Persons with CFS) spend their time managing – and not going to too many doctors unless they can help with specific symptoms. There are a few good doctors, but they are very thinly spread.

      They’ll figure it out some day – hope I’m a) still alive, and b) it’s fixable. And then, watch out!

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  2. juliabarrett

    Well, you know what helps me but I don’t think it’s possible for you – loads of outdoor time, fresh air, sunshine, hiking, biking, visiting Montana. I’m sort of stuck these days though post-op. I do think sunshine is important though. If you have some… use it!

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    1. Alicia Butcher Ehrhardt Post author

      I LOVE loads of outdoor time. I get mine in a gentler way: digging around (ie, weeding) in my perennial beds. I try to stay out at least an hour on any nice day – gardening my plants and my soul. NJ gets enough water to be gorgeous (though it can be hot and muggy in the summer), and I have bee balm and lilies and hydrangeas and daffodils (often in the same beds – different times), and right now the forsythia is in magnificent bloom along the back fence.

      I had a very nice bench refinished last year with sturdier wood – and it is a beautiful place to watch the kids on the court – and remember when it was MY kids on the court.

      Hope you get back to hiking VERY soon as long as you want. And say hi to Montana – I think I drove through it once, from college to grad school in Madison, Wisconsin.

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