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?

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Comments

Jody, thank you for the encouraging words and helpful descriptions. And congratulations on your success in regaining so much health. :)
 
Hope4,

I know I'm very fortunate to have recovered as much as I have. I have many quiet routine days when it would be easy to forget that there's any broken pieces to me. Until I have to tackle something that is not routine and the breakdown begins. And then I try to use every trick and technique to minimize the dysfunction or work around it.

I know if I tried to go for broke and tried to ram through in an all-or-nothing way I'd falter and fail all the time. I also know that for those who are dealing with severe symptoms, even the bunny slope is too taxing and can lead to relapse. For these heroic souls, maintenance of body and soul is a full-time job and more should not be attempted. Hopefully all of us will regain more health in time.
 
It’s sort of a brain speed thing. My brain is slow, and needs to be often. It is how it maintains itself. Rest while waking, by means of emptiness and st illness whenever possible.. (Look at what this computer did—turned stillness into saint illness.) Finding a way to rest while doing something, a way to sleep, in a sense, while still awake. That is what I need

If I were to have to spend a whole day with normally functioning people, especially fast, loud or intense people or situations, It is increasingly stressful and starts to seem unreal. I escape when I can, inside or out, to return to the rhythm my brain and my system want to be in. This is the speed at which my balance can be maintained.

Nature has no quarrel with this, but flows with me. I draw my support from this. Also from the love I feel towards where I am. I am sustained by this kind of background relationship.

The human tempo, the city tempo, especially, and the demands of our machine-run stuctures with their requirements for numbers and speed, memory and accuracy, to fit into their systems, are a cliff’s edge I can fall over.very easily. Sometimes I do.

I live in this irrational place, complying however I can with an internal need for rest, for slowness and simplicity, while sometimes making myself reach a faster rhythm on top, to stay legitimate (if only barely) with the way things are, with other people and any structure I must participate in.
 
Thank you for writing this Jody. It's good to stop and take the time to rest. But it's also important to be at ease with ourselves. Thank you :D
 
Oh boy, can I relate to this. Three years ago I decided to apply to an online master's degree program, and I'll be graduating in June. At first was disheartening to realize how different my brain and body function now compared with when I was a (mostly) healthy undergraduate over a decade ago. Focusing long enough to read (and hopefully understand) articles, organizing my thoughts to write coherent essays, and learning new vocabulary and grammar in a foreign language--these tasks were all like climbing mountains. Like you, I learned how to tackle things bit by bit with lots of mental and physical rest in between. But the effort was worth it because I discovered that I can still learn and I can still think!
 
It’s sort of a brain speed thing. My brain is slow, and needs to be often. It is how it maintains itself. Rest while waking, by means of emptiness and st illness whenever possible.. (Look at what this computer did—turned stillness into saint illness.) Finding a way to rest while doing something, a way to sleep, in a sense, while still awake. That is what I need

If I were to have to spend a whole day with normally functioning people, especially fast, loud or intense people or situations, It is increasingly stressful and starts to seem unreal. I escape when I can, inside or out, to return to the rhythm my brain and my system want to be in. This is the speed at which my balance can be maintained.

Nature has no quarrel with this, but flows with me. I draw my support from this. Also from the love I feel towards where I am. I am sustained by this kind of background relationship.

The human tempo, the city tempo, especially, and the demands of our machine-run stuctures with their requirements for numbers and speed, memory and accuracy, to fit into their systems, are a cliff’s edge I can fall over.very easily. Sometimes I do.

I live in this irrational place, complying however I can with an internal need for rest, for slowness and simplicity, while sometimes making myself reach a faster rhythm on top, to stay legitimate (if only barely) with the way things are, with other people and any structure I must participate in.
Beautifully expressed Sing.

Thank you for writing this.
 
Oh boy, can I relate to this. Three years ago I decided to apply to an online master's degree program, and I'll be graduating in June. At first was disheartening to realize how different my brain and body function now compared with when I was a (mostly) healthy undergraduate over a decade ago. Focusing long enough to read (and hopefully understand) articles, organizing my thoughts to write coherent essays, and learning new vocabulary and grammar in a foreign language--these tasks were all like climbing mountains. Like you, I learned how to tackle things bit by bit with lots of mental and physical rest in between. But the effort was worth it because I discovered that I can still learn and I can still think!
RebeccaRe

Major kudos to you! What an accomplishment. I can only imagine how difficult and challenging and draining that must have been to get there. But you got there!

Thank goodness we aren't stuck with just the options of going full-force or not going at all. Because you know where we'd all be in that case. When we are well enough to do so, finding out what increments work for us individually can mean the difference between being stuck or gradually getting somewhere we want to go.
 
How do you deal with the challenges of learning new things?
Ah Jody, you articulated this so very Perfectly and Exactly.

Create and Maintain One's White Space: thats brilliant. I'm needing to relinguish some greed for mental stimulation because I"ve not created enough White Space here lately.

I thought that knitting the baby sweater would be relaxing, and I knitted outstandingly, 50 years ago. I had to actually look up: casting on. EGAD.
I tore the sleeve out at least six times. I had to count stitches for the first 39 rows. Inexplicable holes appeared. Its: imperfect.

I had my mothers Antique Singer delivered. Ordered special motor lubricants. Enjoyed squirting that into the holes and admiring the machinery. But the tension is off, its puckering and I cannot COGNITIVELY figure out whats wrong. So now a layer of DUST is landing on the machine. So despite the idea of making a christening dress: For three months I am unable to go to a fabric store. And puckering is unresolved.

My driver's license requires renewal; it has dawned upon me that I may be unable to pass the written test. My father had to give up his license at 85. What is wrong with me?

The cognitive impairments are huge, the Marine Fog huge. Short term memory banks are inflamed.
I was having to pass training modules at work, and found myself having to take notes for tests that don't require that you take notes. It was taking me four hours to take the one hour training and I was barely passing. Its VERY SCARY.
 
Ah Jody, you articulated this so very Perfectly and Exactly.

Create and Maintain One's White Space: thats brilliant. I'm needing to relinguish some greed for mental stimulation because I"ve not created enough White Space here lately.

I thought that knitting the baby sweater would be relaxing, and I knitted outstandingly, 50 years ago. I had to actually look up: casting on. EGAD.
I tore the sleeve out at least six times. I had to count stitches for the first 39 rows. Inexplicable holes appeared. Its: imperfect.

I had my mothers Antique Singer delivered. Ordered special motor lubricants. Enjoyed squirting that into the holes and admiring the machinery. But the tension is off, its puckering and I cannot COGNITIVELY figure out whats wrong. So now a layer of DUST is landing on the machine. So despite the idea of making a christening dress: For three months I am unable to go to a fabric store. And puckering is unresolved.

My driver's license requires renewal; it has dawned upon me that I may be unable to pass the written test. My father had to give up his license at 85. What is wrong with me?

The cognitive impairments are huge, the Marine Fog huge. Short term memory banks are inflamed.
I was having to pass training modules at work, and found myself having to take notes for tests that don't require that you take notes. It was taking me four hours to take the one hour training and I was barely passing. Its VERY SCARY.
Yes. I understand. I really do. And yes it can be terrifying.

Re: knitting. I had a similar experience. Before illness, I had knitted 3 pretty sweaters for myself, a jacket for my husband and half a dozen baby sweaters before my first child was born. I went on to have twins and two more babies after that so I didn't do any more knitting for years:)

Once I could no longer read or watch TV or listen to music or have more than the most basic short conversations out of sheer desperation and boredom I turned back to knitting. I made the most godawful snarls you've ever seen. I had expected to be rusty but I had no idea what a cognitive and physical battle this was going to turn into.

Eventually I learned that if I wanted to be able to do this I was going to have to limit my time to about 5 minutes to prevent a prolonged mental collapse and also the inflammation and swelling and pain that I was very prone to back then at the slightest provocation. I could cripple myself for weeks after "overdoing" something small for a matter of moments.

And even then I had to leave knitting alone for days afterward. And then do my tiny 5 minutes again ... It took weeks to get up to speed at all. But the thing is, I got there. And now I can knit like a normal person for hours if I feel like it and have churned out baby blankets and hats and sweaters for grandbabies and have even sold a few pieces.

But I had to sweat my way through the bunny slope to get there.

Similar thing with sewing. I'm still in the middle of that one. Next time I sit at my sewing machine it will be for only about 10 minutes and it will only be to reinforce the stuff I did the last time. Not ready for a new lesson. Translation -- I will be able to sew a few straight seams. And then stay away a few days. And then maybe be able to look at a pattern or read a bit. And then stay away again. Must keep the long term goal in sight! This is how we get there.

It's embarrassing and demoralizing and exhausting and slow. But it works. Mostly.

I'm sorry you have to do the written driver's test. Perhaps if you go over the material a lot -- but in short doses -- it will seem familiar enough and part enough of the routine our bodies and brains insist upon to stick with you through the test.

My son is 28 and has also had ME/CFS since he turned 16. He has no driver's licence and since he doesn't really go anywhere that's not a problem these days. If he were to ever have to get one we'd have to drive him to the place and have him walk and walk out and come home. Then go back days later or whenever he has recuperated enough, and have him walk in and maybe sit down for a minute. Et cetera.

Let that body/ brain implosion get over with and get the place familiar. So he has a better chance of being able to just do the material.

I have been fortunate to be able to work online for the last 10 yrs. And that has meant that I can have notes or emails or other written instructions in front of me for just about everything. I will often have Notepad open with the info on it because I can have it open on top of the screen while I'm working. I need that because I can forget what info I've read before I can switch from one screen to another. With it on top of the page, I can hobble my way through it.

Slow. Small. Lots of white space. Key.
 
I have been fortunate to be able to work online for the last 10 yrs
Thats the only reason i was able to complete my "career". I had a home office. I could pace myself. I had alot of accumulated leave from: not vacationing. If I got really tired, I could stop. I was also able to use a Federal program that allows "sick people" to use their sick leave, when they need to use it. Otherwise, I was required to: ask permission to be ill and use my own sickleave. So I mostly read huge reports and wrote complex reviews, and made phone calls and participated in alot of conference calls.
 
Thats the only reason i was able to complete my "career". I had a home office. I could pace myself. I had alot of accumulated leave from: not vacationing. If I got really tired, I could stop. I was also able to use a Federal program that allows "sick people" to use their sick leave, when they need to use it. Otherwise, I was required to: ask permission to be ill and use my own sickleave. So I mostly read huge reports and wrote complex reviews, and made phone calls and participated in alot of conference calls.
Working from home is awesome for chronically sick people. For so many of us it is the only possible work option, as difficult as it can still be. If I couldn't have worked from home I could not have worked at all.
 
But I had to sweat my way through the bunny slope to get there
So then: I get all these art supplies to relaunch my Artistic Endeavors. Because 40 years ago, I was also artistic.

So all that stuff was all over the kitchen table for a number of months. And somehow I managed to: make a few drawings and put a few colors on paper. But one day, I did a wet on wet thing, 45 minutes of controlling your water color accident. It was: just exhausting, like I had run a marathon.

Watercolors were put away four months ago, and have not yet returned.
 
So then: I get all these art supplies to relaunch my Artistic Endeavors. Because 40 years ago, I was also artistic.

So all that stuff was all over the kitchen table for a number of months. And somehow I managed to: make a few drawings and put a few colors on paper. But one day, I did a wet on wet thing, 45 minutes of controlling your water color accident. It was: just exhausting, like I had run a marathon.

Watercolors were put away four months ago, and have not yet returned.
Yep. Sounds about right. Sound heartbreaking. But yeah. I have had similar derailments and have had to back away for extended times. Some things I haven't yet tried to go back to.

But the good takeaway from this type of experience is -- force yourself to spend literally only a minute or two. I mean that for real. A minute or two. You will feel stupid and frustrated and mad. And it will be so hard to do this. And then stay away for like a couple of days. Seriously. Then go back and spend 3 minutes.

It's your shot at being able to one day embrace it again:)
 
There are really so many ways people can participate in the world if they are allowed to be who they are, and treated like an Adult.
Rufous McKinney,

I agree. If we can custom-fit things to what we need and what we are able to do, rather than just being bound and gagged by what we can't do, we can get somewhere. And a little respect, being treated like an adult, goes a long way too.
 
But the good takeaway from this type of experience is -- force yourself to spend literally only a minute or two. I mean that for real. A minute or two. You will feel stupid and frustrated and mad. And it will be so hard to do this. And then stay away for like a couple of days. Seriously. Then go back and spend 3 minutes.
I hear you and I think, this is an important message regarding Mental Pacing. I suspect most of us still overdo on Mental Pacing. (I'm here, now instead of: gazing at the ceiling)

I just did a personal PACE experiment, GETS version. Took notes, used a calendar, pushed myself a little bit, as I NEED TO BE ABLE TO GET THRU AN AIRPORT.

And that generated the 14 day crash and worst Symptoms I've Yet Experienced. So my own experiment with N= 1: generated a really bad result that indicates: must do EVEN LESS. Much more White Space.
 
I hear you and I think, this is an important message regarding Mental Pacing. I suspect most of us still overdo on Mental Pacing. (I'm here, now instead of: gazing at the ceiling)

I just did a personal PACE experiment, GETS version. Took notes, used a calendar, pushed myself a little bit, as I NEED TO BE ABLE TO GET THRU AN AIRPORT.

And that generated the 14 day crash and worst Symptoms I've Yet Experienced. So my own experiment with N= 1: generated a really bad result that indicates: must do EVEN LESS. Much more White Space.
Rufous McKinney,

Sounds horrible. I know it is horrible. I am sorry to hear that you're enduring this.

About the Mental Pacing, it is also physical pacing. For instance, thinking about filling the bobbin started the Mental Clock ticking down. But picking up that bobbin started the Physical Clock ... or maybe walking from the living room to my sewing room started that one. But let's just say it was picking up the bobbin. So two Doomsday Clocks are in motion.

Re: white space. Yeah, sounds like you need a great deal of it right now. Also keep in mind though if you are overwhelmed at the idea of having to lie lifeless for hours at a time. Even white space can operate by the bunny slope methodology. You can take 5 min. here, 10 min. there. If you're in a chair and in the middle of something you can close your eyes for 10 min. and let the smoke dissipate and the thunder in your ears roll off.

I discovered a thing some years back that was important for me -- our Ultradian Cycle. I wrote about that for my website http://ncubator.ca/Time_Ultradian.html Have a look, it's a short article and not full of science-y talk (something I find difficult since illness).

If we can try to operate with these natural rhythms in mind, it can make a difference.