Why Is it so Hard to Learn New Things With ME/CFS?

Why Is it so Hard to Learn New Things With ME/CFS?

by Jody Smith​

On good days, I mostly operate on cruise control, with the occasional moment of brilliance and quite a bit of vegetative regeneration. I can handle most things especially if they are routine and familiar. Bring in something new, though, or something I haven't dealt with for awhile and it's a whole new ball game. One I don't tend to win.

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I used to be pretty smart, and a darned good multi-tasker. Just sayin'. I could give homeschooling advice on the phone while sorting out two or three squabbling kids, writing notes to myself and making lunch, and still have brain-space to spare. That all changed with ME/CFS.

I know that everyone runs into snags when they're learning something new, or revisiting something they used to do. The accompanying challenges that I deal with though, are aberrations I never experienced before I got sick.

It's a whole neurological, brain-draining, muscle-impacting dynamic I never knew was possible before illness. But I've been finding my way around it through the strategic use of baby steps and bunny slopes.

Baby Steps and Bunny Slopes

I'm a big fan of The Bunny Slope School of Methodology. I break things down into the smallest possible increments with the biggest amount of down-time I can manage between them.

See, I sort of sneak up on my body. If it's a small enough bite maybe my body won't notice and won't freak out on me.

I seriously only spend 5 minutes at a time on any new thing, and I don't expect to get back to it for several days and then ... I do it again. When some symptoms no longer appear during these efforts then I increase to 10 minutes. And so on.

I don't really get a heckuva lot done on any given day. Desperation is what makes me do small bits at a time because it's the only way I can do it. Otherwise I would get exactly nothing done ever.

I know that many of our people get derailed and stuck by exactly this kind of thing because they don't really realize just how excruciatingly slow and small some starts need to be.

Brand New Things

New and unfamiliar things must be approached slowly and carefully, like a rabid dog, and with an eye on the long-term prize. The new things take a ridiculous amount of planning over a ridiculous period of time. For instance when I learned how to crochet, not only did my brain react badly but so did my body.

Here is a typical run-down of symptoms. My thoughts become fragmented, my brain feels like it has changed shape, weight and size inside my head. My hands become clunky. If I'm walking I might bump into things. A feeling of oxygen hunger and light-headedness slowly but inexorably emerge.

This often begins before I've actually done anything.

The after-effects of a fractured brain and the inflamed, sore and stiff muscles that often come along for the ride can last for days or weeks.

If I continue to be stressed, that is to say if I haven't quit yet, I'll get a feeling that is not nausea but it's reminiscent of that. My breathing changes, requiring more effort. It's a little like getting the wind knocked out of me. And it can take hours for this to go away even after I stop the activity.

Re-learning Old Things

Case in point. My husband Alan and our son Jesse gave me a sewing machine, not this past Christmas but the one before that. For over a year I did exactly nothing with this beauty of a machine.

My husband papered the room, I equipped it with most of the sewing paraphernalia I could possibly need ... And that was it. Because I was thoroughly daunted by the process required to master this thing, and I was afraid I might end up in an extended crash.

This extended avoidance on my part was having an embarrassing effect on my self esteem and looked like a lack of gratitude which finally I needed to remedy. So I went into my sewing room, determined to make it earn its name.

I spent 20 minutes reading the instruction book and filling bobbins.

It should have only been 10 minutes, looking back on it. Wore me out, and brought on the whole cascade of symptoms which lasted the rest of the day.

If all goes well I can do something like that maybe once a week, and gradually build up to the long-term goal, in this case of using my blasted sewing machine.

I sewed a seam on some scrap material. Yay! Then had to look up the next slightly complicated step ... and blew my cognition right there for the next day or so.

Days later, I did several practice runs on scrap material and finally ran a real seam on a piece of fabric. The actual sewing time was negligible but the time required to work this ME/CFS brain and muscles up to it was ridiculous.

And the down-time needed after the first few brief sorties took days. So this whole process actually took weeks.

I had gone through the same rigmarole when I took up knitting again a number of years ago. Fortunately (as with sewing) I already knew how before I got sick, it was a matter of starting up again.

That took probably a month. I'd knit for 5 minutes and feel so stoned and hands became so unresponsive to my will that I had to go lie down and was useless for the rest of the day. That time around I triggered severe inflammation in my hands and arms that had to settle down too.

But by sneaking up on the task slowly and being patient over a period of time, I was able to get going again. Over the last couple of years my ability to knit has taken off and the enjoyment it gives me is incalculable. It's just that the slow painful beginnings are so challenging.

Weirdly (at least it seems so to me) once these things are no longer unfamiliar all those symptoms cease to be stirred up. I can sometimes continue with an activity that becomes quite complex and do it for hours. I assume it's because the brain/ body has been convinced that this thing is normal and routine again.

Plan and Strategize

Try to do things in small bites. Maybe nibbles. Try to have nothing major going on the next day or so. And it helps to build in breaks where you do nothing.

It's impossible to overstate the importance of white space. By that I mean stretches of time when absolutely nothing is going on. Zero. It's quiet and I am not trying to think about anything or do anything that requires any effort.

Maybe I'm playing a computer game or maybe I'm lying down with my eyes closed. I need that empty time regularly interspersed throughout my day like I need air and water. enough white space makes all the difference in the world.

I am well enough these days to spend a half hour several times a week visiting my dad's nursing home. It's a six-minute drive from my house. I can even do half an hour or so of errands around town on my way home.

But then I need an hour or two when I'm doing nothing much. Maybe later in the day I can do a little writing. I can read a book perhaps. But that's all the safe energy expenditures for the day. And generally speaking I need a day or so where I am doing nothing, in between any challenges.

Mind you, there were years on end when any and all of this was far out of my reach. What your strategy might be — or if you can even have one — depends very much on what your health is like.

There was a time 10 years ago when I had managed to work my way up from being mostly bedbound to being able to go for half-hour walks, doing laundry and cooking dinner. I was able to drive the 3 minutes to my mother's place once a week to visit.

But when I started doing some writing, the visits had to cease and the walks got shorter and fewer. It was very important to spend more time in bed. I had naps in the late morning and late afternoon. Sometimes also early afternoon.

My mental energy — what there was of it — had to be almost entirely centered on my work. And I was only writing a couple of 250-word articles per week at that point.

Over the next six months that started to feel more normal. My body and brain had accepted it as a part of life. I was asked to write a couple of 400-word articles a week. This was a huge change for me and I had to once again cut out everything but writing.

Slowly increasing in this fashion, I eventually worked more than 40 hours a week for several years. Mind you, those 40+ hours a week were carried out in my own bedroom or living room, with plenty of white space, and I did precious little else.

Everything I've been able to do since then has involved a very slow increase at a snail's pace with some crashes and derailments along the way. The key has always been to start out with baby steps on the ME/CFS bunny slope.

How do you deal with the challenges of learning new things?

Image by Pexels from Pixabay
 
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Comments

@Jody I have a couple of friends who urge me and remind me to take mini-vacations, -- those five-minute breaks or longer, or really taking time out, and not pushing myself.

I looked at your Ultradian cycle page. I think it is true. Your website is very attractive.
 
If we can try to operate with these natural rhythms in mind, it can make a difference
Will go check out the article, thanks.

The other part of my GETS experiment was: recovering by doing almost virtually nothing. So watching that is interesting as I AM feeling much better from this do close to absolutely nothing. Just don't bother vacuuming. Just don't worry about: buying new thread. Just eat that same thing.

I have suspicions that my bobbin is the issue. And the thread might be 50 years old. So I need a new spool of thread. Its on the field trip list.

There are alot of rhythms in this illness, daily ones and others.....
 
@Jody I have a couple of friends who urge me and remind me to take mini-vacations, -- those five-minute breaks or longer, or really taking time out, and not pushing myself.

I looked at your Ultradian cycle page. I think it is true. Your website is very attractive.
Thanks Hope4:)

Most of it was written about 10 years ago when I first got back online and was just beginning to learn some techniques that would help me to get something of a handle on my life once again.

Without pacing I would be a vegetable.
 
Will go check out the article, thanks.

The other part of my GETS experiment was: recovering by doing almost virtually nothing. So watching that is interesting as I AM feeling much better from this do close to absolutely nothing. Just don't bother vacuuming. Just don't worry about: buying new thread. Just eat that same thing.

I have suspicions that my bobbin is the issue. And the thread might be 50 years old. So I need a new spool of thread. Its on the field trip list.

There are alot of rhythms in this illness, daily ones and others.....
Rufous McKinney,

There are so many rhythms to this complicated monster we live with.

I'm glad you're finding resting to be helpful. We live with an energy deficit. Don't know why but we do know it's true. We run out fast. So we need lots of little pit stops to make some more.

Resting for long stretches is wonderful. Sometimes though it can be an unwieldy practice. Can't do it that way all the time. So sometimes we give up on it because it's too hard to make it work.

If you had to recharge a cell phone and didn't have time to give it a full charge you'll do better with giving it a short one than with none at all because you want to wait till you can give it the full charge.

We don't store energy or make it last very well. So we need to stop and make a little more off and on through the day. And hopefully not just replenish what we used up but maybe even recuperate a little on top of that.
 
Will go check out the article, thanks.

I have suspicions that my bobbin is the issue. And the thread might be 50 years old. So I need a new spool of thread. Its on the field trip list.
Yeah, it could have to do with your bobbin. Old thread? Yeah, that could be it too:)
 
We don't store energy or make it last very well
So many hints at: whats going on in the bodies. All these hints.

I was really shocked during my GETS experiment when, on day 4 of pushing: I achieved NO MITOCHONDRIA ARE FIRING. A type of near paralysis. While at the laundramat. I had, about four months back, walked four blocks into town and when i headed back: experienced a complete paralysis near a phone pole. I wondered: what might people think, driving by, this lady is over there just kinda paralyzed, a block from her apartment. I Now can connect the two paralyzed events.

Lets just go on a little drive, I gaze out the car window. This seems benign enough. Processing the blurry visual inputs: dizzying. Woozy Drunk. Bedrest to recover again. And there are wildflowers everywhere and I have to just maintain Indifference. The world exists, and the beauty exists, regardless of whether or not I can take it in.

Perhaps I am successfully turning into a level 12 Buddhist. It takes energy to resist. During my bit of more energy yesterday- both irritated and angry showed back up. (let it go). These emotions require a little bit of energy to even have them. (oh, and I called doctors and insurance yesterday also NO WONDER).
 
So many hints at: whats going on in the bodies. All these hints.

I was really shocked during my GETS experiment when, on day 4 of pushing: I achieved NO MITOCHONDRIA ARE FIRING. A type of near paralysis. While at the laundramat. I had, about four months back, walked four blocks into town and when i headed back: experienced a complete paralysis near a phone pole. I wondered: what might people think, driving by, this lady is over there just kinda paralyzed, a block from her apartment. I Now can connect the two paralyzed events.

Lets just go on a little drive, I gaze out the car window. This seems benign enough. Processing the blurry visual inputs: dizzying. Woozy Drunk. Bedrest to recover again. And there are wildflowers everywhere and I have to just maintain Indifference. The world exists, and the beauty exists, regardless of whether or not I can take it in.

Perhaps I am successfully turning into a level 12 Buddhist. It takes energy to resist. During my bit of more energy yesterday- both irritated and angry showed back up. (let it go). These emotions require a little bit of energy to even have them. (oh, and I called doctors and insurance yesterday also NO WONDER).
Rufous McKinney,

lol You may be headed toward becoming a level 12 Buddhist but I think maybe you have a ways to go yet:) You (like me and so many of us) sound pretty resistant to the whole letting go thing. If I'm wrong, I do apologize:)

Are you familiar at all with the Krebs cycle and ATP production? To me, the simple version is -- our adenosine triphosphate production malfunctions. And sometimes we actually physically come perilously close to running out of energy -- not in the way we usually use that phrase but literally running out of energy, the fuel that keeps our brains and bodies alive and functioning.

It's been quite some time since I've read anything on this and because it drains my brain in no time flat it's not likely I'm going to doing a refresher on it anytime soon. So this is just the basics and if I get anything wrong, someone help me out and please let me know:)

It takes a certain amount of time for us to make more ATP and when there ain't enough of it available to do the job we go flat. Drop to the ground. Our brains say No. Because our bodies are intent on keeping life in them. All non-essentials must go. that might mean thinking, walking, talking, comprehending ... until there's enough energy makers available to resume (semi) normal operations.

If I recall correctly, when we are dangerously low it takes 48 hours to bring the stores up to a workable level again. When I read that a bell went off for me. Because I had had this experience time and time again, of crashing and needing 2 days to feel remotely human again and even then I was barely functional but I was functional. After 48 hours.

So I believe our bodies and brains have a message they'd love for us to get. And that is, Help us out and quit using up all the juice. We have serious work to do.
 
So I believe our bodies and brains have a message they'd love for us to get. And that is, Help us out and quit using up all the juice. We have serious work to do.
yup. In 1974, I Aced the Kreb Cycle test.

Resistence to letting go? Nah (snigger)
 
yup. In 1974, I Aced the Kreb Cycle test.

Resistence to letting go? Nah (snigger)
No of course not:)

Re; acing the Kreb cycle test -- Oh good! you can tell me if I came close then:)
 
You find out how much energy brains use: when you have insomnia sessions. I found myself starving on days when the sleep was particularly impaired.
 
You find out how much energy brains use: when you have insomnia sessions. I found myself starving on days when the sleep was particularly impaired.
That is interesting. I haven't run into that particular thing myself. But I can see it.
 
It is amazing to me how well folks are able to look back and see how choices or events tie into physical and mental and emotional symptoms. It took me a long time to start tying it all together. The first time I cooked dinner and then enjoyed eating it with people I made lasagna...slowly. I pulled the pans and bowls out and rested. Pulled out ingredients and rested, etc step by step. That lasagna took about five hours to make, but it was so amazing to know I'd created something and could enjoy it. I'm still struggling with the self-judgment ("I should be able to ...") but every step counts, right?
 
urgh.. my brain took 10mins to figure out the comments. I was confused as I thought there were all different people posting but I could not see their names so thought there was something going wrong, urgh 10mins to just figure out Judy and Rfous were talking back and forth.

Great article Jody, I may copy and use it to help advocate for how my brain runs, I struggle to get people to understand it and how hard this all is. You described it so well, when I tell people I need "down time" it kind of sounds like I'm being lazy. I like how you termed it "white space"

My current project has stalled right now too, I was trying to pave with someone else doing the harder physical stuff (eg digging and handling me the bricks while I'm sitting on ground laying them), a 1m x 2m spot to put my two bins on so weeds stop growing in that area.

I was slowly weekly working on it (at the rate of placing 5-8 bricks per week with also another's help ..things are slow going here) , but have no run into an issue with it. That small patch Im paving which now has 3 and a bit rows of bricks done, the slope of it has ended up sloping the wrong way so when it rains the rain going there will run into my BBQ area and onto another one day to be paved area instead of into the garden and the pavering bricks with this slope, by the end row are going to not end up level with ground, (If not flat with ground it will be too hard having to lift my bins to put them onto this area rather then just be able to roll them there), so I need to correct this.

So I need to figure out how many bricks need to be removed and from which rows to have the slope going the right way is instant mental fatigue (and not to say dreading having to redo/destroy something which has taken weeks to do) = another stalled project. I'm sad about it as it was going well before things went wrong. I know this stall is not a permanent one as I NEED to do something about that space and stop the weeds from going there but it may be weeks now before I can get my brain over the current problem and start to work to fix it. It could end up in the "too hard" basket for months.

Sometimes people wonder how I did something but they have no idea it may have taken me 8mths to do.... and half of my projects, I run into problems my brain did not consider and they then NEVER get finished
 
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urgh.. my brain took 10mins to figure out the comments. I was confused as I thought there were all different people posting but I could not see their names so thought there was something going wrong, urgh 10mins to just figure out Judy and Rfous were talking back and forth.

Great article Jody, I may copy and use it to help advocate for how my brain runs, I struggle to get people to understand it and how hard this all is. You described it so well, when I tell people I need "down time" it kind of sounds like I'm being lazy. I like how you termed it "white space"

My current project has stalled right now too, I was trying to pave with someone else doing the harder physical stuff (eg digging and handling me the bricks while I'm sitting on ground laying them), a 1m x 2m spot to put my two bins on so weeds stop growing in that area.

I was slowly weekly working on it (at the rate of placing 5-8 bricks per week with also another's help ..things are slow going here) , but have no run into an issue with it. That small patch Im paving which now has 3 and a bit rows of bricks done, the slope of it has ended up sloping the wrong way so when it rains the rain going there will run into my BBQ area and onto another one day to be paved area instead of into the garden and the pavering bricks with this slope, by the end row are going to not end up level with ground, (If not flat with ground it will be too hard having to lift my bins to put them onto this area rather then just be able to roll them there), so I need to correct this.

So I need to figure out how many bricks need to be removed and from which rows to have the slope going the right way is instant mental fatigue (and not to say dreading having to redo/destroy something which has taken weeks to do) = another stalled project. I'm sad about it as it was going well before things went wrong. I know this stall is not a permanent one as I NEED to do something about that space and stop the weeds from going there but it may be weeks now before I can get my brain over the current problem and start to work to fix it. It could end up in the "too hard" basket for months.

Sometimes people wonder how I did something but they have no idea it may have taken me 8mths to do.... and half of my projects, I run into problems my brain did not consider and they then NEVER get finished
taniaaust1,

I so know what you're talking about. I get all my stuff done in tiny increments -- with tons of white space:) -- or none of it would ever get done at all. And, as you have described, so often it may look like a quiet leisurely pace of activity but ... that's not what we are experiencing. The brain fog, the body stones, the mental confusion, the vertigo, the sapped sudden exhaustion ... and all of it can last for days after just a few minutes of the wrong kind of exertion.

I'm with ya, for what it's worth:)
 
brain inflammation cripples the mind in so many ways
Yup. I am somewhat adjusting to my revised Brain Capacities. I think this contributes to anxiety which is already amped with our inbalances. Its really tough.

Just keep giving Self permission to be kind to Self.

Reading the newspaper, or a New Yorker magazine: hurts too much. Or: just takes all week to read that article. Thats ok.

I desire to fix my old broken sewing machine: but instead i just rather stare at it, aimlessly. Paralyzed rather.

Cannot see to thread the needle. Literally spent 1/2 an hour on that. (yes i will try a new method).

I was once highly skilled cognitively. Thats affected. So I will not ALSO pummel myself for it. Not anymore. I did enough of that, already.