Bad night recovery: Update from the trenches of ME/CFS with 20% more energy

Bad nights are inevitable when you have certain illnesses, and ME/CFS is definitely one of them. It is crucial that I see these as just something that happens. Even if it IS a moral failing, there is no point in working under that assumption: it just interferes with regaining control. (This is a post in a series: first part here; second part here, third part here.)

The basics of recovery

Recovery is a fragile thing. The higher I go, the farther – and harder – I fall. But – I don’t have much choice: eventually I will have to gather the shreds up, do something positive, and get back on that darned rocking horse.

I don’t do anything HARD – once I’ve declared a recovery day, the most important part is getting my confidence back. I give myself a whole bunch of tiny successes, in the three areas of my life:

  1. what I want to do,
  2. what I need to do for myself,
  3. and what I need to do for others.

‘Need’ is defined here as things on my ‘should’ list.

I also need to plan for a better night: I am still tired, and I am still fragile.

Success helps recovery: TINY THINGS – and the 5-minute rule

It helps immeasurably to get a bunch of quick successes under my belt, to do something – anything – that I can call positive. Making these tiny in scope and short in duration means I can have a lot of them happen – as soon as I’m able – and they won’t be horribly taxing. They will prove to me I am doing something to regain control:

• Take care of live things first: Gizzy (my chinchilla), plants, and, in this Indian summer of sudden heat and no rain, watering the transplants and volunteers and plants on the edge – which will be the first to go if I don’t do something.

• Write something on the WIP – not text, but a quick jotting down of ideas for what’s next into the notes file for the current scene. Since writing keeps me sane, I need to fit a little bit of writing in.

• Call a friend – keep it short.

• Walk around yard – 4 times, not 6 (1 time yesterday)

• Pull a FEW weeds.

• Do a tiny amount of yoga stretching.

• Naps, naps, naps – extra rest somehow (okay, these may take more than 5 minutes, but GETTING to bed is a short decision)

• Do some small housekeeping thing: drain, put away dishes, wash tiny pile of stuff from picnic; fill ice cube tray.

• Figure out the most critical thing pending – find a way to do it: the new Verizon wireless bill.

• Mend fences: email a quick apology.

• Deal with something new: make decision about a poster I need to approve for someone else to finish her job.

I turn around and, by keeping to the 5-minute rule, I have accomplished an amazing array of things that needed doing.

A sense of recovery

I made no commitment to myself or anyone else that I would exercise forever, or take care of ALL the bills and paperwork, or finish the current scene. That would have been a very bad idea on a recovery day.

I don’t know how any of this would have worked without the tiny bit of extra energy – so I don’t know if it will work for other people – but I think the technique of committing 5 minutes or less to a task (stolen from Alan Lakein’s book How to get control of your time and your life) makes it possible for even a tired fogged brain to think ‘I CAN do this,’ and be right.

The key: no recriminations

The most useful technique:

• Take 5 minutes for guilt and recrimination and feeling stupid – and keep it to just 5 minutes.

Like most people of my generation, I was brought up with a work ethic, and deeply regret that I can’t get done the things I should be contributing to my family and the world.

‘Should’ is the danger word here: who I am comparing myself to is the problem. It is my younger self, my well self, and my engrained notion of what I would do in a perfect world. I have to keep from telling myself that if I just gritted my teeth and did what I’m ‘supposed’ to do, all of this CFS nonsense and all of my backlogs would become easy to deal with.

It isn’t true.

Even I, in recovery from a bad night, can see that flogging myself can’t possibly help, and takes energy away from doing other things that CAN help. The 5-minute guilt trip both allows for the regrets – and limits their power.

And now, having finished, I am going to put myself down for a nap – it’s literally the least I can do for myself.

Comments? Have you found a way to get your confidence back?

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6 thoughts on “Bad night recovery: Update from the trenches of ME/CFS with 20% more energy

  1. clairechase51

    Thanks for the explanation of ME/CFS/CFIDS.
    Re: the moral failing…..what comes to mind is the saying of not criticizing if you have not walked in another’s shoes. People say much out of ignorance…..how sad, because their comments are hurtful. So many people have suffered so much for so long before diseases were understood. I am so sorry you have this….I admire your efforts every day. You were a hard worker as a teen when I knew you, I have no doubt you would be kicking up a storm today,
    if you were able.

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  2. Circe

    Oops! I wrote a mini-series length “thank you” and dissertation on not being able to write my dissertation about an hour ago, but maybe forgot to hit “post comment.” The 45-minute writing segments I have been assigning myself are sometimes too long. Thank you for yet another empowering idea. I immediately sat down for two separate 5-minute sessions, which were both probably closer to 10-12 minutes long. I am now going to pick cherry tomatoes before it is completely dark. And then “get up and do it again.” Or not. But after doing a lot this morning, this feels so much better than an afternoon with no writing 🙂

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    1. ABE Post author

      ALWAYS – and everywhere – Select All and Copy your comments before hitting Submit. The gods of the internet watch for when you don’t do that – and eat those comments preferentially. 😦 You can even paste them into a text file on your computer for safety’s sake.

      Glad the idea worked for you – as I said, it’s not original.

      Lakein’s book is a treasure trove of techniques for dealing with procrastination – unpleasant or overwhelming – and something works every time I try it. It go me through my dissertation: I’d allow myself to read – but only his book – as I procrastinated; every single time, I’d find what would work THAT day, and get to writing. It is never the same two days in a row for me, and there are tasks that are both unpleasant AND overwhelming – but usually it’s more one or the other on a given day.

      Someone said you have to lower the bar enough so you are continually meeting your expectations. It helps. After all, this is life – and no one is keeping score but you (and me).

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  3. clairechase51

    Just quick comments:
    What is ME? I’m sure I should know.
    It is not a moral failing! Where did that come from?
    I can see your logical mind working…NICE! Even when you are down…you are trying to figure it all out. Good for you…trying to find a way…trying to make sense of it all. Nice for you and those you share it with!

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    1. ABE Post author

      ME is the name that has been used in Europe for CFS – specifically myalgic encephalopathy or myalgic encephalomyelitis (the second is the more common). My associations want to use ME or ME/CFS – to give the disease more recognition. Whoever called it CFS originally – when ‘fatigue’ is a symptom of so many other things – left us with a name that in many people’s eyes trivializes it.

      There is so much out there under CFS, ME, ME/CFS, and CFIDS (Chronic Fatigue and Immune Dysfuntion Syndrome) that, until someone figures out what is IS, we will have to still access, that changing names isn’t happening well.

      The names are just as conflicting as the symptoms, which have such an overlap with Fibromyalgia (FM) that many of us have both (I don’t, or at least I think I don’t).

      Which is why I tag all my post with all three.

      Confusing, isn’t it?

      As for a moral failing, the number of times people with CFS hear “You’re just doing this to get attention.” or “You don’t have anything except laziness – you should exercise more and you’ll be fine.” or “I’m tired all the time, too.” or “It’s all in your head (this from physicians! Still!).” or…

      It gets to you sometimes – as if you had made a personal choice to be miserable and get other people to take care of you – which mostly does NOT happen. Don’t get me started!

      Add to that a country/world with a strong sense that people should work hard. Never mind the ones who don’t.

      And it inevitably causes self-doubt: because it isn’t yet measurable or treatable or its causes known. Or it IS a moral failing: remember the beginnings of the AIDS epidemic?

      Invisible illnesses are even harder to get help from than the visible ones – and even people with major problems physically have a hard time getting compassionate support.

      So most of us try to do as much as we can too much of the time… 🙂

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