Article Never Enough Hours in a Day With ME/CFS

Never Enough Hours in a Day With ME/CFS

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.

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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?

Image by SplitShire from Pixabay
 
This article resonates with me so much--I almost cried from reading it! I'm going through a stressful time at work right now, and there aren't enough hours in the day or days in the week for me to rest and recharge. For every day that I'm 'on,' I need a day off, and I can't get that right now. And it's so hard to explain to a boss: "The work you're giving me is interfering with my ability to rest!" To the outside world it sounds like laziness. But to us, it makes perfect sense.
 
RebeccaRe

I am sorry to hear about what you're going through. Knowing that so many others of us experience it helps a little but I know it doesn't help to solve anything. Your community here knows that you aren't lazy. Knows how hard you have to work and how much energy you have to expend just to get through a day.

If you can take frequent short rest breaks through the day -- say every hour to two hours find a way to get as flat as possible -- just leaning back with limp arms in your chair can help -- close your eyes, shut out as much noise and other stimuli as you can for even 5 minutes, longer if you can manage it ... I don't know if it's possible in your work day but I hope you can find some white space.

Thanks for letting me know that the article touched you. I always wonder whether what I'm saying is making a difference for anybody. It's good to know that it has done so for you.
 
Thank you very much for taking the time and expending your energy to write and post this article.

Pacing is still extremely difficult for me. Something I struggle with on a daily basis. Thank you for sharing your resting/pacing strategies and experiences.

My new mantra is going to be a direct quote from your article: "Get proactive, by being inactive."

To be honest, that statement made me laugh out loud when I first read it, but it's SO TRUE for some of us with ME/CFS!!!

If I had the time and energy I would make myself embroidered throw pillows with that saying on it. One for my bed, and one for the sofa. My two resting spots. 😊
 
Thank you very much for taking the time and expending your energy to write and post this article.

Pacing is still extremely difficult for me. Something I struggle with on a daily basis. Thank you for sharing your resting/pacing strategies and experiences.

My new mantra is going to be a direct quote from your article: "Get proactive, by being inactive."

To be honest, that statement made me laugh out loud when I first read it, but it's SO TRUE for some of us with ME/CFS!!!

If I had the time and energy I would make myself embroidered throw pillows with that saying on it. One for my bed, and one for the sofa. My two resting spots. 😊

lol Zebra:)

You know I almost didn't write that sentence:) In fact, first time through I didn't write that sentence. I wrote "Get proactive." On a later read-through, the second half occurred to me. But still almost didn't write it -- would it sound too much like a slogan? but well, I do love a good play on words, so I couldn't help myself.

Just goes to show, you never know what is going to have an impact. I'm glad it did for you:)

Pacing is so hard. It's horrible to be bed-ridden, it's better to be able to be up and around and do some things. But it's also like a mine field. How much is too much? How do we protect our little energy stream? It's a constant balance act. And it helps all of us who are able to move around and think and function a little bit to talk about this. Often.
 
Good article (though I didn't manage to get through it all).

I'm having that problem currently with my support agency cause they moved my meal support time forward to cater for another person which means Im now asleep still trying to recover from the support I have from them earlier in the day when they arrive. urgh. I nearly melted down in tears yesterday evening as due to being woken up for support (second time straight for that support shift)... I was struggling to function so much that I couldn't even tell her what I wanted done so what needed to be done did not get done.
 
Thank you for an excellent article, Jody. I wish you well. It seems this adaptation to rest and white space helped to keep you stabilised.
What you wrote is incredibly helpful.

Especially for me. This is hard for me. I have begun to appreciate it as one of my "life's lessons"; i.e something I actually find hard to do.
It has forced me to examine my mind-set, conditioning and "work complexes". It has helped me understand bits of my "shadow".

I could never "laze about in the day" you see.....ha ha !:lol: I had to be working, productive, active, pushing myself (physically mostly, but mentally too) My idea of a good day was one where I came in tired out at night, ate dinner, rested after hard work.

So...that was in the good old days, before this illness.
Of course with ME/CFS that was no good, and it seems I am getting the message. So I lie down when I can now in the days. But it is so tempting to think "what have I got to do when this half hour enforced rest-time is over??" So tempting to let that nagging thing inside me try to take the reins !

When I first heard about rest for ME/CFS I was horrified. My first thought was "Okay -how long for?" (thinking I might have to rest one day....four days.....then be back in the game. Like one is with the flu for instance, or a cold, or a sprained muscle.

So for me it's welcome to a new way of life. And not to see that as a loss, but as having gained in understanding of myself and my needs.
 
Thank you for an excellent article, Jody. I wish you well. It seems this adaptation to rest and white space helped to keep you stabilised.
What you wrote is incredibly helpful.

Especially for me. This is hard for me. I have begun to appreciate it as one of my "life's lessons"; i.e something I actually find hard to do.
It has forced me to examine my mind-set, conditioning and "work complexes". It has helped me understand bits of my "shadow".

I could never "laze about in the day" you see.....ha ha !:lol: I had to be working, productive, active, pushing myself (physically mostly, but mentally too) My idea of a good day was one where I came in tired out at night, ate dinner, rested after hard work.

So...that was in the good old days, before this illness.
Of course with ME/CFS that was no good, and it seems I am getting the message. So I lie down when I can now in the days. But it is so tempting to think "what have I got to do when this half hour enforced rest-time is over??" So tempting to let that nagging thing inside me try to take the reins !

When I first heard about rest for ME/CFS I was horrified. My first thought was "Okay -how long for?" (thinking I might have to rest one day....four days.....then be back in the game. Like one is with the flu for instance, or a cold, or a sprained muscle.

So for me it's welcome to a new way of life. And not to see that as a loss, but as having gained in understanding of myself and my needs.

Wolfcub,

I'm glad you found it helpful. This resting jazz knocks all of us down, messes with our lives, and forces us to find new ways to handle things. Turns us inside out, upside down ... Dealing with the need to rest can be exhausting;)
 
Thank you for taking the time to write this it I could relate to how you were feeling a lot. I have had to have a granny nap as I call it each day but that includes bed rest for 2-3hours before the kids get home from school.

this has enabled me to be present and dressed most days for that part of the day when they want to tell me about their day and we prepare and cook dinner together.

i still struggle with managing my energy as I was always so active never stopping mentally or physically and do crash and suffer payback a lot.

I am now making a plan to catalogue my tasks, plan my time spaced with rest to start to build myself back up - hoping that seeing what I’ve done and having the list will stop me overdoing things & help me mentally accept the new me.

what you said about why stand when you can sit - I must learn to take this as an asset to better management than a feeling of failure in myself. I have been using my kitchen stool again this past 2 days and the world hasn’t ended and I am recovering from an episode of stupidity from a week ago.

after a few years of this my husband and I are now looking into other aids - seat for the shower, ear plugs, sleep mask and glasses, I do have a wheelchair but have hated using it mentally an issue with it before now - must keep my mind sod them looking I’m out of the house!

I have seen a mobility scooter I would love which would help with my issue over being pushed around but it’s expensive so aim to get better with out and ask relatives for money for birthday and Christmas and when I have enough of I’m not well enough to walk everywhere still I will get it.
Thank you for sharing your thoughts and reiterating an increase in white space healing time is not a step back but necessary to move forward
 
Just a great article Jody...and I just read it again.

The moment we feel a bit better...that temptation to simply- function or behave like a normal person for a few minutes...(or hours, or the afternoon)...we can so quickly fall into ENJOYING that moment.

And then it is the next day. And we have to pay the PEM tax.

I have come to enjoy, at times, an enlarged WHITE SPACE. And this article really helps explain what that looks like.

So after an outing..which here is usually an appointment I can't avoid...and if it goes smoothly, and i feel OK, well then I notice I listen to music when I come back home...that you feel a bit lifted from just having somehow- made it through...

But then there I am overdoing (music, foot tapping, ding the xylophone)... and not White Space creating enough.
 
Thank you for taking the time to write this it I could relate to how you were feeling a lot. I have had to have a granny nap as I call it each day but that includes bed rest for 2-3hours before the kids get home from school.

this has enabled me to be present and dressed most days for that part of the day when they want to tell me about their day and we prepare and cook dinner together.

i still struggle with managing my energy as I was always so active never stopping mentally or physically and do crash and suffer payback a lot.

I am now making a plan to catalogue my tasks, plan my time spaced with rest to start to build myself back up - hoping that seeing what I’ve done and having the list will stop me overdoing things & help me mentally accept the new me.

what you said about why stand when you can sit - I must learn to take this as an asset to better management than a feeling of failure in myself. I have been using my kitchen stool again this past 2 days and the world hasn’t ended and I am recovering from an episode of stupidity from a week ago.

after a few years of this my husband and I are now looking into other aids - seat for the shower, ear plugs, sleep mask and glasses, I do have a wheelchair but have hated using it mentally an issue with it before now - must keep my mind sod them looking I’m out of the house!

I have seen a mobility scooter I would love which would help with my issue over being pushed around but it’s expensive so aim to get better with out and ask relatives for money for birthday and Christmas and when I have enough of I’m not well enough to walk everywhere still I will get it.
Thank you for sharing your thoughts and reiterating an increase in white space healing time is not a step back but necessary to move forward

KerryField

We're all constantly trying to learn about white space and how it's a good thing. I'm glad my article helped.:)

Jody
 
Just a great article Jody...and I just read it again.

The moment we feel a bit better...that temptation to simply- function or behave like a normal person for a few minutes...(or hours, or the afternoon)...we can so quickly fall into ENJOYING that moment.

And then it is the next day. And we have to pay the PEM tax.

I have come to enjoy, at times, an enlarged WHITE SPACE. And this article really helps explain what that looks like.

So after an outing..which here is usually an appointment I can't avoid...and if it goes smoothly, and i feel OK, well then I notice I listen to music when I come back home...that you feel a bit lifted from just having somehow- made it through...

But then there I am overdoing (music, foot tapping, ding the xylophone)... and not White Space creating enough.

Rufous McKinney,

I know all too well how easy it is to do these things. It so goes against our grain. I need constant reminding too.

Jody
 
Ah Man!

So good to hear someone describe so much of what I battle with. The EXTRAORDINARY sense that there is not enough time in a day... so, blessed much is used up with "white space", as you perfectly describe it, that precious little is left for almost anything else.

But here, for me, for other parents is the zinger... the time bomb.. the agonizing conundrum that won't go away:

I have four young children. We had two sets of twin a year apart... yep 4 kids under 2... just before a MAJOR and devastating relapse. The children are all now about 4. But, for anyone who has lent an intimate hand in the raising and growing of young souls, you will understand that THEY COME FIRST.

They have only one opportunity to become deeply loved, attached, alive, awake, healthy humans... and I was their primary route to that. They need a quite formidable amount of energy, and although I have help with a lot of their physical care, they need a profound PRESENCE from me and ATTENTION and LOVE.

Really, it has been touch and go, most days for the past four years, whether I will make it through this alive. Essentially their needs trump mine, and I have completely sacrificed myself to them. But, one thing I am completely sure of: I would do it again. However this ends for me...

They are beginning to reach a space where I can take more time off from them and begin to create "chosen" white space rest. ( There were many times I was confined to bed and people were kind enough to prop up my arms with pillows and support my head with neck rests so I could do skin-to-skin with young infants... but that is not "chosen" however one defines the term).

Well, I am just posting this really, to thank you for your insight and beautifully expressed situation.

Was just adding this for any mamas and papas out there.

Everyone's situation is unique, and I have had many years of severe M.E without kids which were just as miserable. But there are interesting challenges doing it with babies and young children.
 
Ah Man!

So good to hear someone describe so much of what I battle with. The EXTRAORDINARY sense that there is not enough time in a day... so, blessed much is used up with "white space", as you perfectly describe it, that precious little is left for almost anything else.

But here, for me, for other parents is the zinger... the time bomb.. the agonizing conundrum that won't go away:

I have four young children. We had two sets of twin a year apart... yep 4 kids under 2... just before a MAJOR and devastating relapse. The children are all now about 4. But, for anyone who has lent an intimate hand in the raising and growing of young souls, you will understand that THEY COME FIRST.

They have only one opportunity to become deeply loved, attached, alive, awake, healthy humans... and I was their primary route to that. They need a quite formidable amount of energy, and although I have help with a lot of their physical care, they need a profound PRESENCE from me and ATTENTION and LOVE.

Really, it has been touch and go, most days for the past four years, whether I will make it through this alive. Essentially their needs trump mine, and I have completely sacrificed myself to them. But, one thing I am completely sure of: I would do it again. However this ends for me...

They are beginning to reach a space where I can take more time off from them and begin to create "chosen" white space rest. ( There were many times I was confined to bed and people were kind enough to prop up my arms with pillows and support my head with neck rests so I could do skin-to-skin with young infants... but that is not "chosen" however one defines the term).

Well, I am just posting this really, to thank you for your insight and beautifully expressed situation.

Was just adding this for any mamas and papas out there.

Everyone's situation is unique, and I have had many years of severe M.E without kids which were just as miserable. But there are interesting challenges doing it with babies and young children.

KnowledgeItselfIsPower,

I'm sure you hear this all the time but I can't help it -- You've got your hands full! I can hardly imagine how it's been for you. I have one set of twins, and one older child as well as two younger ones. All grown up now but I remember what it was like to have 5 kids under the age of 8 ... and earlier to have 3 kids that were ages 3 and under. But at least I was not ill at that time. It came later after my youngest was born.

Even so I remember how very excruciating it was to get through a day, then the next, then the next ... the exhaustion was intense. You have my sympathy and admiration. Respect to you! I can only say, it will get better even with 2 sets of twins so close together. They will get older. And will still be exhausting but it will be a different kind:)

Thank you for expending some of your precious jewels of energy to share your story.
 
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