Never Enough Hours in a Day With ME/CFS

Woman leaning head on the back of a chair.

by Jody Smith

There just aren’t enough hours in the day for the person with ME/CFS. At least, it’s been like this for me. It’s not that I’m so terribly busy. Indeed, I am not. Not like I used to be busy, before illness.

The complicating factor and really, the only factor I have any control over, is the amount of what I’ll call white space necessary to get through a day without falling on my face.

If I’m doing things right, I might be able to go visit my dad at his nursing home for half an hour in the morning, maybe even a few times in a week. I might even be able to spend half an hour doing some errands.

But then I’d better have a couple of hours with no demands after that. And it would be even better if I had nothing else going on till I make dinner. And best if the evening has no obligations at the end of such a “busy” day.

Ideally, I’m only this active every other day or so. Too many days in a row can mess things up. But having a day “off” in between keeps my energy envelope operating.

I can cruise along feeling semi-normal this way indefinitely. If I maintain this rhythm long enough, I can even sort of forget that I have health issues. But all this changes if I don’t make sure I have my white space. A couple of days of too much activity (by ME/CFS standards) without those rest periods built in and I will start to lose ground pretty quickly.

Stay within my proven parameters and I can look like a laid-back unambitious individual. Push past them for more than a few days and my brain is cooked and my body exhausted and swirling with vertigo.

So what kind of white space am I talking about?

I am fortunate in that I don’t have to have daily naps anymore. But I used to. At my peak — or nadir — I had a 2 hour nap in the late morning, then again in the early afternoon, and yet again in the late afternoon.

Hard to believe I could fit that many naps in there? I had a huge need for white space, for down time, for regenerating. I spent more time not doing than I spent doing anything. And that was the necessary state of affairs if I was ever going to be able to do … well, anything.

Now, I do realize that even at that time when I needed so much rest that I was luckier than many of my fellow members of the ME/CFS community. Managing white space for those with severe ME/CFS is a far-off dream, something to aspire to one day.

Because what they need is constant or nearly constant bed rest, they are not getting up for much more than a trip to the bathroom and some can’t do that. The tough thing for them is not, how to handle breaks in activity. It’s breathing. Comprehending what is said to them, if they are able to tolerate someone talking at all.

I knew I was lucky when I got to the point where resting or not resting was my new quandary. This was a step in the right direction.

It was a true quandary however. Because one wrong move could throw me down the tubes like a bad game of chutes and ladders … or a bad throw at Monopoly. do not pass Go, do not collect $200 — in fact, go directly to jail. And stay there till goodness knows when.

So. It was vital to learn the ropes of resting if I ever wanted to be freed from life in my bed.

One thing I learned was that sometimes it’s necessary to draw back, i.e., go to bed, to regroup and try again another day. It’s difficult. This is a hard thing to do, especially at first. It feels like failure. It reinforces the fear that you will never be free of this prison.

But bulling your way along, even if that used to work for you, and even if it used to be your preferred way of getting things done — this is just going to put you in a deeper hole. You thought things had gotten as bad as they could get? Think again. Don’t assume they can’t get worse.

So get proactive, by being inactive. Protect that tiny wisp of energy. Go to bed, even if you don’t want to, maybe even sometimes when you don’t really have to.

Do you have to be busy for an afternoon? Try to squeeze in even just 10 minutes of sitting in a chair, perhaps with your eyes closed, with no sound from TV or music or others’ conversations. Ideally, in a dark room.

I even had to learn not to rock in my rocking chair because I couldn’t afford the energy that leaked out of me.

I had a recliner that I would make a point of draping myself looking lifeless in, about every hour and a half on days when I was up out of bed.

I didn’t wait till I was exhausted and brain-dead. I’d keep an eye on the time, and after 90 minutes of gentle or moderate activity, I’d collapse in my chair, lean all the way back, and check out. No talking, eyes closed.

When I was subject to some bad crashes, after I’d worked my way up to being out of bed again, doing this for 10 – 20 minutes at a time would often take the edge off over a couple of days. If I happened to fall asleep during these breaks, so much the better.

Take the big breaks when you can. And take the little ones when you can’t. Or better yet, build the little ones in as an automatic part of your day.

I read this ME/CFS motto somewhere a few years back. Why stand when you can sit? Why sit when you can lie down? Sounds like a funny meme. But these are also wise words to live by when your depletion is severe and life-altering.

It can take a massive amount of pumping up to provide us with enough energy to handle our little activities. And sometimes it can seem so ridiculous, and so much work for so little reward. But if you want that reward, if you want to be able to do something rather than nothing, think on these things.

Just in case this caution and reassurance is needed for some of you who are tempted to overdo and reach past your safe limits — Be gentle with yourself. Don’t try to do more than you can handle. These suggestions of mine are for people dealing with moderate or mild ME/CFS.

If you live with severe ME/CFS, please don’t hurt yourself. Because trying to do these things when you are not healthy enough can cause you damage and make you lose ground. Let’s not have that.

If you have severe ME/CFS, you know it. And that’s true whether anyone around you believes it or not. I know that many live with people who do not know how to support them, who do not understand the enormity of this illness.

You know if you are able to do anything or not. If all you can handle is breathing, keep breathing. Try to keep hoping. Don’t let anyone push you. You are precious as you are, and fully deserving of nurture and protection.

This whole rest thing is a topic that I have written about frequently. And about the time I think that surely I have written about it enough, I meet another person who has just been diagnosed, or who has been struggling with no idea how to find any relief, and who has had no idea that rest can make a difference, at least for some of us. Or they’ve heard the concept but can’t figure out how to implement it in their new illness-riddled life.

I have had to learn how to operate within my parameters and have done so to the best of my ability for a couple of decades. And even so, I am still subject to the collapse of my house of cards.

This time of year, as summer turns to autumn in the Northern Hemisphere, has over the years been a mine field for me. What is manageable in the summer becomes harder to pull off in the fall. I don’t know why. But I know a pattern when I see one.

Just this week I had a couple of days when I was well and truly afraid that I’d managed to tip myself over the edge.

I had once again forgotten just how horrible the mental turbulence and the physical fragility can be. Felt the despair, and braced myself to hunker down for a perhaps prolonged bad trip. Cut everything possible from my To-Do list and resigned myself to hours in bed with no thoughts allowed.

No matter how long it’s been since the last crash, and no matter how many times I’ve crawled through this, it is never easier to bear.

Fortunately for me, the ME/CFS storm lifted within a matter of days. I must not take the respite for granted, lest I perforce spend another season under covers in a silent room.

And the best way I know to protect myself is with plenty of white space built into my day. Have you found that this helps you?

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Image by SplitShire from Pixabay

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