Has anyone reagained the ability to read?

[glazevedx]

For me, the worst part of this disease is that I can no longer study. I support a maximum of 10 minutes of reading. Then I get tired and start to digress completely in the book.

I wonder what's the role of Irlen syndrome in our disease.

 

[Jyoti]

I am happy to say that I have recovered SOME ability to read. For the first five years (sorry...I bet that sounds unbearable) I, who had made a habit of reading two books a week for decades, lost the ability to get through a page. I could go through the motions, but no matter how simple, I lost the plot--literally-- and soon had to acknowledge that one of my greatest solaces in life was no longer on offer.

But....with nothing other than time to offer as a suspected anodyne, I have slowly regained the capacity. Not only can I read frothy stuff, but I can read serious and difficult literature if I take it in small bites, do not expect too much of myself and am at peace with the notion that it might take me 8 months to finish a book instead of 8 days.

Maybe not what you wanted to hear, but I am ever so grateful for the improvement and will hold that you have one similar or better than mine.

 

[Wishful]

I'm an avid reader still. When my ME symptoms are severe, I can't read for long, but that passes. I don't think that wavelengths of illumination made a difference for me: daylight, LED light, paper or e-ink, all seems the same in terms of readability.

I expect brain inflammation is involved in the loss of ability to read. However, I haven't found an antiinflammatory or immunosupressant that makes a difference. Finding something that suppressed the right immune cells in the right area of the brain isn't easy. If you try a few--or maybe a large number--maybe you'll get lucky and find one that works for you.

I would really, really hate to lose my ability to get lost in a book.

 

[hmnr asg]

I also used to be an avid reader ( it was a big part of my life). After cfs I have lost the ability to focus for prolonged periods. Also, digesting complex information is very taxing on me ( like a textbook). I have completely switched to audio books because of this. I miss reading and exercising so much. I think not a day goes by that I don’t remember the old days when I would bike to a park and read on a park bench. It’s been 10 years and it’s getting a bit easier in that I’m forgetting the joys of reading gradually.

 

[Wishful]

The type of material certainly does make a difference for me. Complex technical material, is hard, and so are fiction books that have really complicated interactions between lots of characters that are hard to keep track of. I also find that re-reading is easier than new material. Some days, if I don't feel able to follow a new story well enough, I might re-read an old favourite, particularly something light.

Maybe give some youth or young adult books a try, or maybe manga. Talk to a librarian for suggestions of books that are easy to read. They might like the challenge of finding something that will give you back the pleasure of reading.

 

[glazevedx]

Maybe not what you wanted to hear, but I am ever so grateful for the improvement and will hold that you have one similar or better than mine.

Thanks, Jyoti. It was less worse you had developed the disease later. You took some time to stablize your life. What did you do to return reading more specifically? I

I'm an avid reader still. When my ME symptoms are severe, I can't read for long, but that passes

I think we have different symptoms of fatigue. Mine includes specially hypersomnia. Anyway, I have always had problems with readings because of my anxiety when I was younger. Now, mentally stable, my eyes just close after 10 minutes reading. The problem isnt even the book, but the mental work.

 

[glazevedx]

I think not a day goes by that I don’t remember the old days when I would bike to a park and read on a park bench. It’s been 10 years and it’s getting a bit easier in that I’m forgetting the joys of reading gradually.

Dont even remind me. Im young and already accepted that I wont finish the university. I'm trying to control this situation, get out of the bed and just go to just find a job (I'm mild nowadays).
I think all of us had to forget many dreams to adapt to this condition

 

[Wishful]

I think we have different symptoms of fatigue.

I don't consider 'fatigue' to be one of my symptoms. It's the mental lethargy and/or brainfog that prevents me from following what I'm reading. I consider ME to be a disorder that alters brain function in different ways in different parts of the brain. It probably doesn't take much of a chemical or physical alteration to interfere with the ability to think clearly.

 

[gbells]

For me, the worst part of this disease is that I can no longer study. I support a maximum of 10 minutes of reading. Then I get tired and start to digress completely in the book.

I wonder what's the role of Irlen syndrome in our disease.

Yes. With intensive immunotherapy it has improved a lot. I can also enjoy music again. You can follow my progress on my self-experimentation blog.

 

[hmnr asg]

Dont even remind me. Im young and already accepted that I wont finish the university. I'm trying to control this situation, get out of the bed and just go to just find a job (I'm mild nowadays).
I think all of us had to forget many dreams to adapt to this condition

I got sick *during* grad school. It was a nightmare.

I don't consider 'fatigue' to be one of my symptoms. It's the mental lethargy and/or brainfog that prevents me from following what I'm reading. I consider ME to be a disorder that alters brain function in different ways in different parts of the brain. It probably doesn't take much of a chemical or physical alteration to interfere with the ability to think clearly.

I agree, its more than just fatigue. I explain it in a perhaps not politically correct way, but i tell my wife my "brain is going retarded".

 

[gbells]

I got sick *during* grad school. It was a nightmare.


I agree, its more than just fatigue. I explain it in a perhaps not politically correct way, but i tell my wife my "brain is going retarded".

I flagged big problems on the neuropsychological test where you have to name animals starting with a letter. I could name 3 then froze.

Thankfully, I have regained a lot of my ability using antiviral immunotherapy (see blog).

 

[YippeeKi YOW !!]

Maybe give some youth or young adult books a try

My mother taught me to read when I was three, and I've been reading ever since, sometimes 4 or 5 books simultaneously, switching around when something became too challenging for my mood at that particular moment, or when I just wanted to explore other universes, including the lighter and more trivial, so losing this ability was crippling....

For several years, about 6, I could no longer read at all. I'd forget the sentence I'd just read by the time I got to the end of it. It was hell. I've always been a heavy reader on a wide range of subjects, including challenging subjects that I knew little or nothing about, and I loved it.

When I started to get a little better and tried reading again, I was bummd to discover I still couldnt follow anything too taxing. That's when I decided tht Harry Potter and Hogwarts was calling ....

It was a gradual re-entry and I cant swear that Harry Potter was the key, but whatever it was, it worked. I still can't settle down for a 2 hour read/browse/submerging, but I can manage as much as 15-20 minutes on a good day, and 10 minutes on a not great one, with pretty solid comprehension and retention, so that's a huge bounce forward ...

Give some Young Adult lit a shot. A lot of it is surprizingly good and very enjoyable, and it's a real upper to see authors who aren;t writing down to their perceived readers ....

I think all of us had to forget many dreams to adapt to this condition

I prefer to think of it as a temporary pause, a hitch in my git-along that may or may not come back in the same shape and form as it was originally, but WILL come back ...

This illness has changed me in a lot of ways, not all of them bad. I'm looking forward to how I'm going to reassemble the new bits with the old, and what comes out of that amalgamation ....

Don't give in, don't give up, don't lose hope, never stop growing in whatever direction this crappy little sandblaster of an illness allows, and keep fighting ....

 

[glazevedx]

Thankfully, I have regained a lot of my ability using antiviral immunotherapy (see blog).

Really happy for you. Hope you improve even more.
The problem with antiviral is that very few people can pay for It. In my country, 2 boxes cost a new car

I prefer to think of it as a temporary pause, a hitch in my git-along that may or may not come back in the same shape and form as it was originally, but WILL come back ...

Yes. I still have this hope. Specially after short remissions. How many years you are sick?

 

[YippeeKi YOW !!]

How many years you are sick?

All told, including the first few when I had no idea what was wrong with me, and God knows Drs were even more clueless, probably 11-plus .....

I'd have to go back thru notes and appt books to get a more clear-cut guesstimate ....

 

[gbells]

Really happy for you. Hope you improve even more.
The problem with antiviral is that very few people can pay for It. In my country, 2 boxes cost a new car

Thanks, my goal is to cure ME and lupus. I'm self experimenting with supplements based on the existing research related to cancer. By purchasing the supplements from China in bulk they are 90% less expensive. I'm probably spending about $2,000 per year on the whole regimen and because it is doctor approved I can deduct half of the expense through my housing assistance budget so it only ends up costing me about $1000 per year. However, if I purchased them retail I can see it costing $20,000 per year.

 

[Celandine]

My daughter did. She was (is!) young and I caught her ME early. She was in the middle of her GCSE year when things got bad and she lost the ability to read even a few paragraphs. She used to zip through novels. It was one of the long list of things that gradually came back for her as she improved. I still don't know the cause of the reading problem, but I think it was a combination of actual visual stuff--sensitivity to light, eyes always burning and dry and vision often blurry--and brain fog stuff--not being able to take in the information.
Oh, if you're not in the UK I guess GCSEs won't mean anything to you! It's an exam here and she was 15/16 at the time.

 

[glazevedx]

By purchasing the supplements from China in bulk they are 90% less expensive.

You need a specialist in cfs to do It. I think there isn't no one in Brazil. Anyway, the price is much lower from China. The unique explanation for such expensive meds is the patent.

She was (is!) young and I caught her ME early.

Probably, It was fundamental for her recovery.

 

[gbells]

You need a specialist in cfs to do It. I think there isn't no one in Brazil. Anyway, the price is much lower from China.

I purchase from NEW-HEALTH-STORE on Aliexpress. They are supplements so they don't require prescriptions.

Existing antiviral drugs don't work well for ME.

 

[glazevedx]

I purchase from NEW-HEALTH-STORE on Aliexpress. They are supplements so they don't require prescriptions.

Existing antiviral drugs don't work well for ME.

For some reason, I read your improvement happened bc of antivirals. Could you list what you are using and the what is bringing the bigger benefits?

 

[gbells]

For some reason, I read your improvement happened bc of antivirals. Could you list what you are using and the what is bringing the bigger benefits?

Follow the blog. Everything is important. My approach is to effect the following:

• Generate antibodies to signal apoptosis.
• Restore function at blocked apoptosis checkpoints.
• Improve the ability of T cells to signal apotosis of multiple infected cells.
• Minimize viral reproduction and block ability to infect new cells.
• Use neurofeedback to optimize dosing.
• Limit inflammation to reduce excess cytokine response.