CFS notes: surviving the dreaded relapse

Are you* having a CFS relapse?

Before you can deal with a CFS relapse, you have to become aware you are IN one.

You would think that would be obvious – staring at the wall, swollen glands, more exhaustion than usual, insomnia worse than usual, odd reactions to normal foods, a general feeling of being depressed and not being able to kick myself out of it – these are some of the symptoms.

Unfortunately, I have all those symptoms in greater or lesser degree most of the time, so I tend to try to ignore them, and soldier on. I have writing to do, and it is finishing Pride’s Children, Book 1, and I don’t let myself diverted too much by things I know I can’t do much about.

Aren’t you just undisciplined and lazy?

Well, no. Not more than usual.

I have the same inspirational signs other writers have:

“Discipline is the difference between what you want NOW and what you want MOST.” (source?)

“The most heroic thing a creative person can do is to live an orderly life so that the work can get done.” Cary Tennis.

“FIGHT for the RIGHT to WRITE.” (me, I think)

“Take care of yourself – no one else CAN or WILL.” (me, 11/18/2007)

“My secret weapon is REST.” (me)

And the more entertaining,

“Please stand by – my brain is experiencing technical difficulties.”

I’ve been writing formally for about 19 years. I made the decision to ‘Go Pro’ (meaning take is seriously enough to get ready for publication) on December 12th, 2013. For the past 11 months, when I am functional, I block the internet, set the program Freedom for a chunk of time (typically 5 hours, 300 min, which allows one to two half-hour naps), recorded the amount of time, set my timers, put my glasses on, and go to work.

Work = butt in chair, trying to write fiction.

This is always the first thing in the morning, and I don’t even eat until a protein shake halfway through, right before or after first nap, because diverting blood from the head for things like digestion completely stops forward progress.

My records show that since Feb. 10, 2014 (when I started keeping records of Freedom time): I have done this 102 times, which I consider pretty good. (I do NOT want to speculate on words/hour or words/day or finished words of fiction per anything – that isn’t the point, and it would probably be depressing.)

So how do you tell it’s a relapse?

Because it is, when you finally get some control over your brain, much worse than normal.

Normal has a pattern now which I’m trying to optimize.

It consists of getting to bed at a reasonable hour, getting up at a reasonable hour, sleeping at least 6 hours.

Then swallow 3 doses of Vitamin B1**, brief prayers, turn computer on, do a super-quick check of Mail (in case the President needs me, the bank is repossessing anything, the end of the world has arrived, or I’ve been selected for the Nobel Prize for Literature – although I think they call). I try to limit internet access to 1-2 10 min. sessions on the timer, because anything more than that and we get into serious surfing – which can wait until later.

Block internet on Freedom for X min., X usually being 300 unless Life.

Open the files and stare at them. Pour ‘why I can’t write this morning,’ if necessary, into the Resistance file. Switch to the Journal file, figure out where I am, start writing. Simple, right? Process takes over, the brain eventually focuses and gets tired of telling me the same problems we routinely have, and writing fiction looks more interesting – switch to the Enthusiasm file.

I have well over a hundred days on which, during the past year, I managed some version of that. Yay.

But when I can’t do that for several days in a row, even with the expectation that nothing I write may be salvageable, even I finally realize SOMETHING’S WRONG.

When I feel all day as if I were trying to walk on legs made out of wet cement.

When brushing my teeth is too much trouble.

When EATING sounds like too much trouble.

When I surf the web desperately for hours looking for something, anything, intelligent to read (standards too high?), because I can’t make myself lie down, can’t rest when I do, can’t get to bed because, really what’s the point?

The point to be made here is that if you don’t REALIZE you’re in a relapse, you can’t DO anything about it.

So what causes relapses?

There’s the rub.

Everything and anything. But there appear, on inspection of my life, three main reasons:

1) I got cocky because I was working reasonably well, and I DID TOO MUCH. A day, a couple of days, a week.

This one I watch for, but it still catches me unaware because the effect is usually DELAYED a day or two from the activity that causes it. I walked around the block. I left the house more than 2-3 times in a week. I had a long phone call (you try to stay coherent on phone calls), a doctor’s appointment, or a visitor.

2) A crisis came along, externally caused (death in the family, sick pet, car failing DMV inspection on the last day of the month, tax season, or something the kids need). That last has priority if you’re a parent. Now that they’ve been out of the house, technically they, younger and healthier than me, can take care of themselves just fine – and do. Unless Life.

This one is insidious – there is no time to prepare or plan, and recovery will just have to wait until I physically collapse or the crisis is over.

3) Fate. Random. The Universe. Life. The things you absolutely cannot prepare for. The disease pulls these on you without warning, without logic, and just because it can.

This is the kind that takes so long to catch – because the first thing to go seems to be the ability to make good decisions (very bad brain fog), and I find myself NOT doing the patterned things I need to do because I just can’t (come on, Alicia – How hard can it be to put your glasses on?). I can’t make myself go to bed, or take naps.

When I take naps, there is less than the usual relief effect.

Time flows by. I can tell – the number changes on the clock on my Mac. When I decide to look.

I can’t make the simple decision to push the timer button, or block the internet. If I set up Freedom, the brain simply doesn’t com online. for 5 hours.

The sun goes down, and I finally notice I’m starving.

The husband comes up from his office (he’s retired now), and says, “How was your day?” and I just stare at him.

I’m writing this post so I can have something to read next time it happens!

So what do I do to get out of a relapse?

After recognizing it, I mean.

I don’t know.

More of the same: naps, proper food, extremely mild exercise, canceling activities, being over the crisis or the vacation (yes, unfortunately, the lovely vacation cause a major relapse – but I kind of saw it coming: too much walking, and too much good food).

Getting back to a pattern as quickly as possible – and not worrying if it works.

The most important: BEING EXTREMELY KIND TO MYSELF.

I’ve tried berating myself, making plans, tightening the discipline, swearing up and down I won’t do Y again, having hissy fits and angst.

Nothing worked.

The adrenaline generated might work for an hour – and makes the slump worse.

I’m trying something new this time: FAT. It is the fuel my brain works best on. In the form of chocolate mousse (don’t get too excited: aspartame, cream, chocolate protein powder, and some good cocoa).

Me, I prefer carbs (cookies, cake, you name it – if it has sugar, I want it). But the body and brain feel like a dead cart horse on carbs, so we don’t. Most of the time. And are prepared for the horrible 4-day period of getting them out of the system when we do. I don’t even call those relapses – they’re so predictable.

I’ll post if FAT helps.

Surviving the CFS relapse.

So far, I have.

I would like to continue doing that, please. Thank you.

A relapse isn’t fatal – it just FEELS fatal.

I keep records as well as I can when I’m not being able to focus and write.

When I’m coming out, I now am starting to realize these are abnormal events – not just business as usual – and I am learning to look back and track and write down whatever I can salvage (instead of berating self; much nicer).

I breathe. A LOT. Nice deep counted yoga breaths in a pattern.

You can’t go wrong with breathing.

I think. I ask myself if there is anything I can do differently next time – and write it down in files like this.

I figure my main job in like is fine-tuning my instrument – mind and body – to do what I’ve decided to do: write fiction.

Is it worth it? I sure hope so.

HOPE is what keeps me trying to figure out how to live with this beast.

If you have CFS relapses – do you have solutions which work for you?

———
*NOTE: Being able to write this post at all means I may be pulling out of this particular relapse.

**NOTE: I’m still taking B1 (if curious, type ‘B1’ into the search box, and read the last couple of posts – and yes, I need to write an update) – nothing else has worked.

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7 thoughts on “CFS notes: surviving the dreaded relapse

  1. J.M. Ney-Grimm

    I love coconut oil. I used to have a persistent physical lethargy that inexplicably lightened at times and inexplicably worsened at times. It started happening to me when I was about ten years old. I had no idea what it was, and because it came on me as a child, I just accepted it. By the time I reached adulthood, it was so much a part of life that I never questioned it. I would complain from time to time that I was tired, but never made a big deal about it. And no one ever really paid much attention to my mild complaints. Then, sometime late in 2011, I started eating coconut oil, straight up (not in a recipe). These days I eat about a teaspoon three times a day.

    I’d read that the short-chain fatty acids that make up coconut oil go straight into the energy cycle. They don’t get stored as fat.

    I blogged about the book that started me off on my experiment.
    http://jmney-grimm.com/2013/01/butter-and-cream-and-coconut-oh-my/

    And, boom, did it ever work for me. I was stunned. I felt like a new woman. I’d *never* known what it felt like to have actual physical pep. I loved it!

    Wishing you the best of results with your own experiment with fat!

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    1. Alicia Butcher Ehrhardt Post author

      I’m not sure whether I read – or absorbed – that post, because I can’t remember when I started following your blog.

      I tried coconut oil for a while – I forget based on what – but don’t remember noticing any changes at the time. I eat very few grams of carbs a day (except on the week’s vacation – ah… – and I felt sluggish and out of sorts then), so I shall think about giving it a try again. A teaspoon three times a day would be extremely simple: add to my three protein shakes – I used cream this morning, and breakfast seemed to last a lot longer.

      I’ll try again – give it a couple of months – see what the effect is. At this point, it can’t hurt – and I bow to your research. If it is going to work, I should see an effect within a week or so; there’s a natural foods store a few blocks away. Thanks for suggesting it – it looks as if I was kind of headed that way.

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      1. J.M. Ney-Grimm

        Everyone’s body is slightly different. There’s even research that shows that people with a genetic heritage from the far north (I’m of Swedish descent) often do not have the digestive enzymes needed to extract all eight essential amino acids from plant foods. These people need to eat animal foods in order to thrive. That was undoubtedly *part* of my physical lethargy, which was at its worst when I was eating a vegetarian diet. Adding meat back to my diet *helped.* But didn’t do all that I wanted. It was the coconut oil that got me over that line between lethargy and pep.

        The other advantage of coconut oil is that it strips the protective coating off the outsides of pathogenic viruses and bacteria, killing them. But it does not harm the friendly microorganisms that we need in our intestines for optimum gut health. So I get sick less often when I am eating coconut oil regularly.

        Oh! Be sure to get *unrefined* coconut oil. The refined oil is more processed.

        But…everyone’s body really is different. We all share a subset in common from having *human* bodies. But there are many variations in the details of the biochemistry.

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