POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

[Chrisb]

I always used to do a lot of reading, but that largely stopped upon becoming ill - although it has varied over the years.

At one time I realised that I was collecting reference type books on my tables. Books which could be picked up, a page picked at random, half a page read, and put down. By the time I read half a page I have lost concentration, and lost the thread.

Occasionally I come across novels which I would not normally be interested in and then experience a strange phenomenon. I will read as of old, and finish the book in a day. I will live the experience and it will all make sense in the moment. But when I put it down, if anyone asks about it, I cannot say what happened, or even name the characters.

Normally I find that processing sops long before the eyes stop scanning. I often find that the eyes have moved over a few paragraphs, but nothing has been absorbed.

 

[rosie26]

I agree about the lack of concentration. I drift off while reading a book and find myself staring out the window and then realise I am holding a book and have to find where I had left off. I think this is why reading books is so much better for me than reading online. I am more relaxed and have more rest breaks with books in hand.

 

[Valentijn]

For novels, I used to read 100 pages per hour, and loved horror, fantasy, and sci-fi. Now I can't even read a relatively short and simple young adult novel without getting a brain crash.

I do read a lot more scientific papers now, however

 

[Jenny TipsforME]

I don't read for fun anymore though I read quite a bit for information gathering or as online social life.

With my 2012 relapse I got bad ME acquired dyslexia. For a couple of years reading was really hard: the lines of text weren't straight, I muddled letters and numbers. I couldn't do those captcha things to prove I wasn't a robot! I also couldn't read for information gathering which was problematic.

 

[arewenearlythereyet]

I used to always have a book on the go for pleasure (sci fi and fantasy), never read newspapers (most of them in the UK are just too partisan) can't be bothered with magazines. I have to read a lot of scientific literature, and consumer reports for work. The work stuff used to take a large chunk of my cognitive energy for the day so at my worst I stopped reading for pleasure completely . I also developed problems turning pages of books due to numb fingers and avoided kindles because the swipe feature was a pain, as well as holding up the weight of the thing.

Now I'm a bit better I use a kindle oasis which has click buttons to turn pages (and is very light), so after a period of 4 years of not reading for pleasure I'm back reading. I only do this in bed to help drifting off to sleep and still have to re-read sections ..but it's a good sign when this happens to turn out the light and go to sleep. I only read about a chapter a day so this is a lot lower than before I got ill.

 

[Cheesus]

It's great to see how many sci-fi and fantasy fans we have!

Maybe we should start an audiobook club...

 

[Keela Too]

I used to read extensively, but since ME I, first read much less, and then switched to audio books.

However, audiobooks are slower than reading, and also harder to look back on (in a book you can easily flick back the pages etc.)

I am doing a bit better lately, and have read one physical book since. I suspect my reading has slowed.... hmmm.

 

[Rvanson]

This poll is utter nonsense, since it does not include reading online, nor even using a tablet to read Kindle. I read lots
of things, much of it pertaining to the subject of ME, but also because newspapers and magazines are so politically
biased these days.

The newspapers don't cover many of the stories that I read about online, so unless it's free I am certainly not going to shell out good money to read bad trash.

The media these days are too biased against people like me: a white, heterosexual man who is a conservative. They would have you believe that we male non-gay and non-liberal men are to blame for all of the ills in this world and I wont stand for it at all.

 

[Wonko]

@arewenearlythereyet

The first e-book I got was kindle paperwhite, it went in the draw after a few weeks coz it's nowhere near clear enough for me to be able to read. The weight thing, eat more pies, sit it on your belly

I currently use a samsung tab s2 (8 inch) as my main reader, I also have a samsung A (9.7 inch) for when my eyes are too bad for the 8 inch. It doesn't get used much due not so much to the weight but due to the torsional force it exerts on my hand even when it';s weight is taken my erm...me. Even the 8 inch hasn't been used in at least a month, all of my reading spoons are currently being used on here.

I experience most, possibly all, of the visual, memory/recall issues described by people here - a lot of the time even if I wish to read it gets abandoned within a few words due to visual issues, and trying to resolve things creates enough mental load to cause memory/processing issues which make the whole thing pointless.

 

[trails]

Throughout most of my life, I have always been a voracious reader of almost any fiction genre. Like @Wonko, I was surrounded by books.

A few years ago, at my worst, I had to stop reading completely. I'd read a paragraph, get ready to move onto the next, and realize that I couldn't remember a single word I had just read.

Today, my brain function is a little better and I have resumed reading. However, I find myself limited to what I used to refer to as potato chip books...thrillers and such, with relatively simplistic plots. The unusual character names used in sci-fi and fantasy (which I love) just don't stick in my brain anymore. The more sophisticated literary techniques of a Dostoevsky or Dickens are now quite beyond me.

All of this, of course, bothers me a great deal as reading has always been such a treasured part of my life

 

[Hip]

This poll ... does not include reading online, nor even using a tablet to read Kindle.

Yes it does. This poll does include reading of newspapers or long essays or long articles online, and does include reading books on a tablet or smartphone. It does not matter where you do your in-depth reading; this poll just asks whether the amount of in-depth reading you do has changed since you developed ME/CFS.


The only sort of reading this poll excludes is the information hunting or information processing-type of reading. For example, I recently spent about an hour or so researching kitchen weighting scales online, in order to find a good scale for the kitchen. But that sort of reading is excluded, as there is little depth to it; it's just information hunting.

I find there is a difference in mental state between in depth reading of books or long articles, and information hunting-type reading. In the latter, I find the mind is usually quite keyed up and aroused, with attention sharp and narrowly focused on finding or processing the relevant information. It is like being at work.

Whereas with the enjoyable in-depth reading of books and long interesting articles, I find it is the opposite: the mind usually goes into a relaxed, almost meditative state, and attention becomes softer and more widely encompassing, as your mind is filled with all the wonderful minutiae and nuances of the text. This is not like work, it is more like pleasure.

 

[Mrs Sowester]

I used to read 2 or 3 novels a week, the Guardian newspaper and books on botany and plant physiology before I got ill. Then I struggled with reading a paragraph and pretty much gave up trying - it hurts not to be able to do something you love.
I've found I can reread old familiar novels I know well, but an old novel is hardly novel, that's an oxymoron isn't it?

This last year I've managed to read 2 1/2 novels for young adults about fairies, at a rate of 3-4 pages per bath! And a Jon Ronson book, his style is journalistic and easy to read.
This year's pitiful total of 3 1/2 books is actually a huge, fourfold leap for me.

 

[Invisible Woman]

I have always been s bookworm. Fantasy, sci-fi, horror - all sorts.

For work, I had to read and write a lot. Mainly very technical stuff. So I suppose I read less overall since becoming ill but a lot more fiction.

When I'm really I'll I lose the ability to read altogether.

My kindle is one of most treasured possessions as books are so heavy. Also I can adjust backlight, fontsize etc. when my eyes are struggling.

I frequently have to go back and figure out who is who cause I've lost the plot .On the plus side I can reread books which saves money!


I loathe audio books - I lose track of what's going on. When I tire the sound of human voice really grates. Shame.

 

[erin]

Got ME 2005, diagnosed 2008; my reading skills declined gradually. It was more or less OK until 2007, declined slowly until 20014 and it is reduced drastically from 20014 than now. It was not a sudden process.

 

[Wonko]

)

 

[Kenshin]

Have only read Hip's first post (Ironically too brainfogged to read through it now).
I chose 90% less in depth reading. I still browse forums ok most of the time.
I've switched to audiobooks which are great.

 

[perchance dreamer]

No matter how how brainfogged and bad I feel on a particular day, I can always read. It's something this illness has not taken away from me. I've devoured books my whole life, and it got me through a difficult childhood and continues to give me a huge amount of pleasure.

I'm not sure why I can read with good comprehension, but have such a difficult time with audio processing. That was the case even before I got sick. It's often very hard to understand what someone is saying, but I get it if I can read it.

 

[msf]

I read fewer novels now. I probably read slightly less (although, maybe not, as I have more free time), but the biggest change is I use my Kindle more (it´s lighter) and sometimes I will listen to lectures on a particular subject rather than read a book about it.

I should say that I have moderate ME, and that when it was more severe, I basically only listened to podcasts (generally humorous ones that I could zone out from) and watched TV.

By the way, I think we should get points for Reading pubmed articles - that stuff is much heavier than Tolstoy, etc!

 

[anciendaze]

I still read a lot, mainly because I can't consistently do much of anything else. There was an entire year when I was unable to read a single book. I've struggled back from that, but still have problems with heavy technical material. I will often go through a light book in a day.

A friend who viewed my collection of books when I moved said there was a lot of interesting stuff, but he wouldn't get through it in 20 years.

 

[Wishful]

I still read a lot--a mix of fiction and non-fiction, some fairly technical. There are days when I find it hard to read for more than a few minutes (I become aware that my mind keeps drifting away), and that's usually a fairly severe PEM day. More commonly, I can read easy material--light fiction or old favourites--but feel daunted by the thought of starting something that requires more mental energy. I'd say that my total amount of reading is about the same, but has shifted in the type of material (difficulty).

I've noticed another change, but it's 'closeness to end of life' rather than ME/CFS: I'm less likely to read about global issues, such as politics, economics, etc. I realize that I'm not going to have any effect on global issues, so there's no point in getting stressed over them. The hole in the sand is feeling comfier.