No spoons today: writing with CFS

***WARNING: DON’T READ – unless you know what the Spoon Theory is***

This is your warning, Gentle Reader. I don’t normally do whining posts, but I have to today, to be true to my ‘calling’ to write about CFS. Don’t read – just because I have to write. [For the foolish curious: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/%5D

This blog serves as a diary of sorts, of the things I’m thinking about and living with and doing. Maybe I’ll WRITE this post – and not post it.

Maybe I’ll print it out and reduce the pages to confetti, as that’s what it will deserve.

It’s a beautiful spring day, 62°, sunny, clear, and the daffodils and hyacinths are blooming, with the forsythia ready to pop like popcorn into strident yellow by the back fence. I want nothing more than to try a walk, or, better still, a bike ride. I would love to walk around the yard and fill vase after vase with daffodils, or at least one.

But I can’t afford it: I not only have no spoons, but I need some for tomorrow, and I am running a debt at usury from the activities of the past week.

I function best with 3-5 naps a day, leaving the house at most 2-3 times per week for no more than two hours counting travel time, and eating no carbs (I mean none – fewer than 20 g/day).

Instead, over the past ten days, I have left the house eight days, with two of those days having two ‘outs’ each, and many of them have been for far longer than two hours. Naps have suffered: I have been running on nerve, and I have been practically incoherent by the time I got home.

I have roughly stayed away from the goodies. Good for me. Psychologically, horrible for me. Yay, me.

Looking BACK, I can see it was all MY fault.

Some of these events were regular ones, others extras I took on knowing the risk, and the remainder were unhappy accidents of timing.

But it didn’t hit me until today that the reason I’m unable to focus is my own damn fault, and that there has been nothing I could or can do about it but wait for it to pass.

And if I go out for a 15 minute bike ride the two scheduled events for tomorrow won’t happen.

So I can’t afford it.

I’m going back to hermit mode, to taking naps over and over, to doing all the things which will eventually return my writing brain and a wee bit of physical energy to me.

The magnificent Triduum and Easter services were worth it, and next time I won’t plan long-delayed medical visits for right after, and I won’t go out to dinner with a friend who needed to talk, and I won’t keep up my promise to the Folk Music Society to attend the events (just because I’m president this year).

NOTE: Attend only – I perform no useful services (except that the previous president was never seen).

At least it’s pretty out the window. I should have planted the daffodils where I could see them from inside. Way back when I wasn’t sick. Amazing to think those daffodils have been with me longer than my children.

Many of us have it far worse, so, whine over.

And all you healthy people out there: take a bike ride for me.

And don’t complain: if you read this far it was by choice. I warned you.

And excuse me while I go take the next nap mental dialysis treatment.

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11 thoughts on “No spoons today: writing with CFS

  1. clairechase51

    I can’t check “Like” because I don’t like to read you are having a hard day. So sorry! Actually, thinking about it, your body has lots of bad days, but when your mind joins it….it is a very hard day! Hard days are just that, hard days…..at least you put those feelings and that energy into this article in your blog…and you can get some love ans support from your friends far and near who care about you and love you. Animo Alicia….things will get better…..Rx…lots of naps to catch up. .

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    1. Alicia Butcher Ehrhardt Post author

      Hi, Claire – always nice to have you stopping by. The reality is that things wax and wane, with some bits under my control, others completely not.

      It doesn’t matter: I am moving forward. That’s where the joy comes from, and it is enough. When I think of how fortunate I am, even in my condition, to have what I need to write, well, I’m overwhelmed with gratitude (though grumpy sometimes!).

      My brain is almost on today. I can feel it settling in, ready to tackle the day’s task: use all the bits I’ve gathered to see if I can figure out the right lighting for my new cover. I WILL figure it out – just don’t know when. There is so much to learn in graphic design, even to master the basic tools, and they all take spoons.

      Meanwhile, Hamilton Square is in bloom – this is the only time of year when the suburbs are beautiful, with the ordinary houses surrounded by color.

      What’s not to like?

      Hope your day is luminous.

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  2. donnainthesouth

    raking gumballs? can’t imagine, though I wish son and dil or one or the other would – hadn’t thought about how they mow with them all over the yard – hm, wonder if it just eats them up…but so sorry – I had wondered about you though with all you saying you did but you seemed to enjoy it so; that is, until and I hadn’t known or realized about your doctor appts. after all that – can understand – I just started that routine myself this year and it feels like just one more thing to have to do on top of everything else – what time were your appointments? I know they’ve learned I prefer, if I can, mine as early as possible because then you don’t have to wait – could you do that? would that help? also, don’t think I realized you had a spouse; guess because Kary didn’t – hope he’s a help – does thinking about Kary not having one help? hope you’re feeling better by now but since I don’t see a more recent post assuming you’re still recovering, so hope you get to feeling better soon but think you deserve the rest

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    1. Alicia Butcher Ehrhardt Post author

      I’m the opposite: even though it’s hard, I get the appointments as late in the afternoon as possible. Then I don’t lose a writing day. I write every morning.

      I take a nap, go to the afternoon appointment, come home, take another nap, and the evening is shot – but I didn’t lose a writing day (though the next morning will be bad). Taking an extra nap halfway through the evening sometimes helps.

      Still recovering, but it was bad for only most of the week, and it is starting to get better. Thanks for asking.

      Yup. DH is retired now, and starting to take over the paperwork from me I did while he was working. I can’t wait – he’s even doing the taxes this year! I used to lose weeks of writing time to doing taxes – same part of brain. Go figre (hehe).

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    1. Alicia Butcher Ehrhardt Post author

      If it becomes possible to steal other people’s spoons, you’ll be the first to know.

      Ditto lots of other folks who get extreme fatigue – cancer patients, kidney patients – wouldn’t it be nice to go donate a unit of energy, as you might a unit of blood, for a favorite aunt in the hospital?

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  3. susieq777

    I’m glad you posted this. It’s so helpful to see my struggle reflected back to me. Heps me to maybe not be quite so hard on myself – that inner critic can go to town occasionally when I overdo it. Like I see yours does 🙂

    But oh, isn’t it nice to have done those things? Not necessarily worth it for the 29 backwards steps … and that’s where the inner criticism comes in, I guess. To willfully throw away some future spoons can only be held in contempt when you’re in the days with less spoons. I go down to the bottom of the barrel sometimes on those days, wishing myself away even. But then it’s not like wanting extra life is an evil thing. Especially when you finally understand how wonderful and amazing that is. And that’s all your crime was, in the end, dontchyareckon? A perfectly lovely crime whose penalty comes wrapped in itself though, unfortunately. Try not to be too hard on yourself and I promise next time I’m feeling like whipping myself with s cat-o-nine-tails I’ll think of you and lay down the whip 🙂

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    1. Alicia Butcher Ehrhardt Post author

      Good. The whip never helps. Don’t waste spoons on remorse. Learn to pace better, Alicia – what were you thinking scheduling doctor’s appointments on Easter Monday and Tuesday. (I was just so pleased with myself for finally making those appointments that all I checked the calendar for was to make sure nothing else was going on in the same time slot!)

      Going to the doctor uses up/wastes an unbelievable number of spoons: they keep you waiting. They think your disease is all in your head. They are afraid to prescribe. I avoid them as much as possible. But I’m not stupid. I can get something else, and I refuse to die of preventable illnesses.

      I had a physical. I got my Tetanus/diptheria vaccine and the pneumo vaccination that prevents some other kinds of pneumonia – possibly (should have thought of this!) the very long-lasting sore arm explains part of the lassitude? But the alternative was to go back, and to get each of those on a separate day – more doctor-wasted time. Can’t win – so I’ll laugh it off! And not get Tetanus. That’s good, right? And I don’t have to go for maybe a year!

      I’ll watch the calendar better next time. Maybe.

      Thanks for writing back.

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  4. Janna G. Noelle

    Reading that article (and more significantly, some of the dissenting comments) was a useful lesson in the privilege (yes, I used the p-word) that healthy and able-bodied people enjoy in our society. Yes, healthy people get tired too and sometimes have to change their plans to compensate, but it’s nothing to the extent as described in the article, and rather than get defensive or feel guilty, healthy people should be grateful and use their ability to help out people who are sick and need their support. I’m sorry to hear that you have no spoons today but there is value in enjoying the beautiful day through your window as well – the world is coming back to life after winter. I’m sure another day will come when you can go for that bike ride once you are rested again.

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    1. Alicia Butcher Ehrhardt Post author

      It’s dark now. For those who got out and raked gum-balls from the sweetgums off their lawn all day. I watched them, reveling that they could do that. It’s also dark for those of us who didn’t get out there to help.

      I got extra rest. I will pace myself better. I hope to survive tomorrow, and write again Monday. I am exceedingly fortunate to have a house and spouse. Many of my online friends are not as fortunate.

      Advice on how to help? Just ASK the individual person in front of you who looks like they need it. And listen.

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  5. Thomas Weaver

    “Mental dialysis treatment” — great metaphor.

    I tend to hoard my spoons as much as possible these days, saving them for times when I need a lot all at once (and get a lot of criticism for it from some corners — people who are so darn sure that I’d become perfectly healthy if I just took up jogging five miles every morning or something), but there are always days when the spoons vanish without having been used.

    I’m sorry to hear that you’re having a no-spoon day; I hope you’re able to enjoy the spring weather and flowers, even if for only a little while each day.

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