Are you ok with reading?

[Tella]

I know we have cognitive issues and any exertion is bad esp for severe patients like myself. Can you (esp if severe) read books ok? I find I can strangely read on my phone but my eyes hurt and my head gets overwhelmed when I try to read a book! So upset...

Also read somewhere cognitive exercises that are good for healthy people (even as simple as reading) overexert ME brains and chip away at our health...but in turn make us more likely to get MS and stuff ( we are more prone to it anyway as studies suggest)....

What to do? Upset as can’t read and can’t train the brain as it will make my condition worse but ALSO make MS and all that nastiness more likely... arghhggg

 

[Tella]

Wouldn’t it make more sense to have a headache and eye pain from the screen? Annoyed.......

 

[Hufsamor]

Never mind about the exercises.
I read easy stuff the days I'm better.
On excellent days, I might read books and more important stuff.

But I like to listen to books , with headphones...
Easy stuff, so I really don't have to listen.
On low volume

 

[Wishful]

If my symptoms get severe, I find it hard to read. I haven't found that reading at other times causes any problems. I'm very skeptical that reading increases the possibility of developing MS. I'm guessing that someone has taken scientific findings way out of context.

 

[Rufous McKinney]

Can you (esp if severe) read books ok?

I look across the living room at my husband who can read books. I think I"m envious. But its too much now.

Just too much.

Its easier to read on the laptop but still only short amounts for brief periods due to severe eye strain.

I am unable to wade into the deep depths of How to Fix this Illness, because of these cognitive issues.

My brother called the other day and for a few minutes I'm enjoying talking to him, the KABOOM ZAP nothing is left...I didn't even see it coming. Can't think any longer. Stop Now. Stop.

Today I tried to suggest that my husband, who can read, and is health obsessed his version...that I could use some help- wading thru- some of the topics here- that are DIRELY in need of addressing.

Its clear he is not interested. I'm on my own in solving this. Go read a 57 page treatment guidance document.

 

[Rufous McKinney]

'm very skeptical that reading increases the possibility of developing MS.

I've not heard that either...sometimes I just think this is some version of MS. The "dont' treat them" version.

I was however yesterday of energetically and stress wise, what happens when one is reminded of the exterior world's issues- and in this case- I got really emotionally upset briefly (only allowed briefly). And the incredible pre-occupation these issues (career related) had on my physical health.

My career involved massive amounts of reading and report writing....and had a very negative effect on my physical health. And I got much worse continuing to work.

So I do believe one can push mentally and emotionally that can result in a severe worsening of the MECFS.

 

[Rufous McKinney]

can’t train the brain as it will make my condition worse

the way many of us now live...in complex technological societies... I think we have expected far too much of our brains... and a Less Brain thinking and More Just Being- is in order. If society would just allow that.

 

[Tella]

If my symptoms get severe, I find it hard to read. I haven't found that reading at other times causes any problems. I'm very skeptical that reading increases the possibility of developing MS. I'm guessing that someone has taken scientific findings way out of context.

What the article said is there have been studies done with healthy people and ME patients taking some tests and their level of responsiveness, intelligence etc was measured before n after. After taking some simple tests healthy people became more astute, smart and ME patients the opposite...as any exertion is obviously harmful for ME patients but we all need to do mental work to stay brain healthy. So by not doing much brain work we become much more susceptible to MS etc...

 

[Tella]

I've not heard that either...sometimes I just think this is some version of MS. The "dont' treat them" version.

I was however yesterday of energetically and stress wise, what happens when one is reminded of the exterior world's issues- and in this case- I got really emotionally upset briefly (only allowed briefly). And the incredible pre-occupation these issues (career related) had on my physical health.

My career involved massive amounts of reading and report writing....and had a very negative effect on my physical health. And I got much worse continuing to work.

So I do believe one can push mentally and emotionally that can result in a severe worsening of the MECFS.

Pls see my comment above

 

[Rufous McKinney]

So by not doing much brain work we become much more susceptible to MS etc...

Well, it could just lead to worse ME. I'm not familiar with a study that suggests our illness may lead to MS if we are pushed....

Maybe somebody can find the literature on that!

 

[Wolfcub]

I am usually okay with reading, and don't have problems with eyes. But if I am having a bad time with symptoms flaring then I can't hold onto what I read. It simply means nothing to me.
But most of the time (and I am grateful for this) I am able to read books, but "heavy" subjects....not so much.

But one thing I have noticed deteriorating is my typing. I am getting more and more dyslexic on the keyboard. Almost everything I type I have to look at and then edit because of letters being in the wrong order.

I don 't do "training the brain" exercises either. I do what I feel like doing, whenever. Sometimes life itself gives enough problems to solve, and I think my brain has enough to cope with each day.

 

[Tella]

https://wames.org.uk/cms-english/neural-consequences-of-pem-in-mecfs/
It’s just sad we can’t do simple training ( by training I mean even reading or simple mind exercises healthy people find easy), as that obviously makes one more prone to have dementia etc earlier. It well known the ones who train their brain more (not submerge in useless endless online browsing) are more brain healthy as they age

 

[Wolfcub]

but we all need to do mental work to stay brain healthy. So by not doing much brain work we become much more susceptible to MS etc...

I am not doubting your sources (the study done) but I am still slightly dubious perhaps, because of what happened with my mother.

Her nickname was the "Bletchley Park Lady". No she didn't actually work there during world war 2, she worked in a munitions factory.
But she could break any code, solve any problem. Her brain was as sharp as a stropped knife -always.
This lasted well into her eighties, when she stormed through mind-puzzle books the way I would have read a kid's comic. She devoured them. Her brain was super-bright and got "trained" every single day.
Then suddenly she couldn't remember her sister. She couldn't remember being married. She had developed vascular dementia, and soon didn't even know where she lived, whether it was night or day, and was convinced we were travelling on a train constantly.

No she didn't have ME/CFS or MS. She got severe dementia. Right on the heels of all that brain-training daily.

 

[Jyoti]

For four years, I could not read a book. Not a single book. My custom was at least one book a week before I got sick, some technical and demanding, some just for fun. All I could read during this four-year period was online (which I too found confusing--that somehow that would be easier than a printed page) and short, to the point. Articles that went on too long or were too carefully written would cause me to lose my place, lose my focus and give up.

About a year ago, I found myself once again able to read books. I don't know why--it is not as if my overall condition improved radically, but I saw that change as a sign that things were indeed better for me. I still have to read books in small chunks of 20-30 minutes max, but I can retain what I am reading and on good days, I can read complex stuff, which is a joy.

All to say, it is sorrowful to lose the relationships we had, and for some of us, our relationship to books is a very important one. I hope that those of you are not reading books now but want to will have the gift return and soon.

 

[geraldt52]

After giving up any reading for pleasure for many years, I finally started "reading" audio books and have found them to be a fantastic diversion. I use a player that can be adjusted for speed, and that makes a great difference. If reading has become a problem of anyone I would strongly recommend investigating audio books, and not worry about what's good for you or not good for you.

 

[Rufous McKinney]

About a year ago, I found myself once again able to read books. I don't know why--it is not as if my overall condition improved radically, but I saw that change as a sign that things were indeed better for me.

Thats wonderful you've improved in this way.....and also hopeful....

I"ve been handling more music a bit lately..enjoying that.

I was going to ACTUALLY write a novel (quite seriously)..(only 3 years ago was convinced this would happen) and probably 10 articles on sciency stuff.

Mispelling words, lots of that now. (spelling bee winner who turns off Spell check cause its unnecessary).

 

[Jyoti]

I was writing articles two years ago....hard to believe because I am with you @Rufous McKinney -- the things we long took for granted just gone. Like spelling. Or for me, word-finder. It is just shut off a lot of the time.

Glad you are handling more music. That is a joy and a necessity for the soul, I think.

I guess we can be grateful that spell check is there to turn on since we need it.

 

[Tella]

I am not doubting your sources (the study done) but I am still slightly dubious perhaps, because of what happened with my mother.

Her nickname was the "Bletchley Park Lady". No she didn't actually work there during world war 2, she worked in a munitions factory.
But she could break any code, solve any problem. Her brain was as sharp as a stropped knife -always.
This lasted well into her eighties, when she stormed through mind-puzzle books the way I would have read a kid's comic. She devoured them. Her brain was super-bright and got "trained" every single day.
Then suddenly she couldn't remember her sister. She couldn't remember being married. She had developed vascular dementia, and soon didn't even know where she lived, whether it was night or day, and was convinced we were travelling on a train constantly.

No she didn't have ME/CFS or MS. She got severe dementia. Right on the heels of all that brain-training daily.

I’m sorry to hear that. Sadly we don’t know how and why some people get MS and dementia etc and some don’t just like with Cfs...like there’s one study saying a high number of MS patients have infections like cfs patients...a virus alone can make one disabled as we know.

 

[Tella]

For four years, I could not read a book. Not a single book. My custom was at least one book a week before I got sick, some technical and demanding, some just for fun. All I could read during this four-year period was online (which I too found confusing--that somehow that would be easier than a printed page) and short, to the point. Articles that went on too long or were too carefully written would cause me to lose my place, lose my focus and give up.

About a year ago, I found myself once again able to read books. I don't know why--it is not as if my overall condition improved radically, but I saw that change as a sign that things were indeed better for me. I still have to read books in small chunks of 20-30 minutes max, but I can retain what I am reading and on good days, I can read complex stuff, which is a joy.

All to say, it is sorrowful to lose the relationships we had, and for some of us, our relationship to books is a very important one. I hope that those of you are not reading books now but want to will have the gift return and soon.

Aww thanks! Gives us hope!

 

[Tella]

After giving up any reading for pleasure for many years, I finally started "reading" audio books and have found them to be a fantastic diversion. I use a player that can be adjusted for speed, and that makes a great difference. If reading has become a problem of anyone I would strongly recommend investigating audio books, and not worry about what's good for you or not good for you.

Which app do u use for it? I like audios but I’ve found since getting ME I somehow feel like I have ADHD: anyone can relate?? I can’t just relax and listen to a book. Mind racing. Body wants to move but bedbound. So I just move around in bed and end up doing smth ‘productive’ on my phone like paying bills etc....can’t sit still! Which really doesn’t help me relax my brain n body