I don't use an app. The National Library Service has a program for the blind and disabled where you can get books and a player on a doctor's recommendation. The program is free in California, but that's about as much as I know about it. https://www.loc.gov/nls/
Are you ok with reading?
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I don't use an app. The National Library Service has a program for the blind and disabled where you can get books and a player on a doctor's recommendation. The program is free in California, but that's about as much as I know about it. https://www.loc.gov/nls/
It makes our ME symptoms temporarily worse, but it doesn't mean permanent degradation. Some of us have had temporary remissions: we abruptly switch back into the fully healthy state for maybe a few hours before abruptly switching back into the ME state. Because of that, I don't worry about PEM causing permanent harm. I'm convinced that if there was a proper drug for ME, we could take a pill and be fully healthy again maybe an hour later. Some of us might have to rebuild muscle stamina or brain stamina, but that's not permanent ME damage. I try to avoid PEM because it feels unpleasant, not because of worries about cumulative effects.
Rufous McKinney
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In the past my spell check would highlight words it simply: didn't yet know those...so I could ignore the red line with confidence..knowing I had in fact likely spelled all that correctly.
Now I just figure, whatever- its sortta right, but maybe not exactly...but we know most peoples brains will make the correction. and Bill Maher says never send a second text fixing the Autocorrect mistake.
sorrta is underlined in red; sortta is underlined in red above. Sort of...is not underlined.
starlily88
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I used to read at least 1/2 books a month. Now it is very difficult, unless it is very simple reading like James Patterson books. This week I decided to challenge my brain by reading Ernest Hemingway's "For whom the bell Tolls". I keep it in the bathroom, and every time I have to pee - I read a page - that is all I can do now.
keepswimming
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It depends how tired I am. Sometimes I can read, sometimes the words just swim round on the page.
I really like audio books too. I completely understand the difficulty of needing to rest but struggling to relax. Personally I find lying with my eyes shut listening to an audio book one of the best ways to rest. I often relax better listening to something than I do having no stimulation at all, because then my mind starts racing!
If you want to try some for free and don't mind listening to older books, Librivox is a really good website/app. They are all copyright expired books read by volunteers. Some of the readers are excellent. Or my local library runs an online library which includes audio books - might be worth checking for in your area?
I also have a text to speech app on my phone, which I use less often. If there's an article online I want to read, it gives me the option of listening instead of reading.
I really like audio books too. I completely understand the difficulty of needing to rest but struggling to relax. Personally I find lying with my eyes shut listening to an audio book one of the best ways to rest. I often relax better listening to something than I do having no stimulation at all, because then my mind starts racing!
If you want to try some for free and don't mind listening to older books, Librivox is a really good website/app. They are all copyright expired books read by volunteers. Some of the readers are excellent. Or my local library runs an online library which includes audio books - might be worth checking for in your area?
I also have a text to speech app on my phone, which I use less often. If there's an article online I want to read, it gives me the option of listening instead of reading.
starlily88
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To Keepswimming - I never did an audio book perhaps because I am old school, and like to hold a book but my Dad had one on in his car on long business trips.
Stupid question - but is an audio book a DVD or CD?
Can I play it on my DVD player?
Librivox - website/app - I have cheap Iphone SE so it doesn't download stuff.
Would I have to download a book on my desktop computer?
Then I would have to be in an uncomfortable chair to listen to a book.
Thanks Starlily88
keepswimming
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It would be a CD, I think you could probably play it on your DVD player but I'm not 100% as I guess it would depend on the player.
You don't have to download the book, you can play the chapters straight from the website if you prefer - you would just have to remember where you'd finished last time to know where to start again!
Or you could download it onto your computer. If you don't want to sit into an uncomfortable chair, you could always buy a cheap mp3 player and transfer it from your computer onto there. Then you could listen to it anywhere.
I hope that helps
ahmo
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Reading is one of the things that saves me. I've always been a reader. I read news online, but spend some hours lying down and reading novels. No more non-fiction. Reading is quite soothing for my brain.
It depends on the day. I read a lot, but some days I need that to be really easy stuff. Last year a friend went to the library for me and got me several series of children's books that I remembered from childhood.
I can't read much nonfiction at all. I used to be able to enjoy heavy theory stuff that my professors struggled with for breakfast when I was at 50% health, and now, well, even lighter nonfiction is a struggle.
It's a loss for me, but I am glad I have been able to keep some reading. Even if on bad days it's just in the 3-5 years range.
hb8847
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Since developing CFS I have had physical issues with my eyes that are only apparent when I try to read.
It's a very strange sensation and I've not encountered anyone else with the same issue or read about it anywhere, but it's basically that when I try to follow the words across the line (like this line) I find it difficult to control the "aim" of my eyes.
It's almost like my eyes are in a wave machine and the focus sort of veers above and below the line a bit, and then at the end of the line when I try to go down to the next one my aim is always off.
It doesn't sound much but it really prevents me from reading properly and unless it's something I'm really keen on reading I just give up as it's too frustrating. If I use a pen or something to direct my eyes it becomes easier but I can't do this when reading books or computers so it tends to just be articles on my phone.
Prior to developing CFS I never had these eye issues (I had previously had cognitive and mental issues for many years before anything physical developed) and since improving my physical issues a bit over the last 3 years my eyes have gradually gotten a bit better.
For clarity, I don't have any problems with my vision which is pretty perfect as far as I'm aware, just my "eye coordination" and it only really manifests itself at all when I read.
It tends to get worse when my inflammation worsens. Like for example I have SIBO and if I take medication to address that my CFS symptoms worsen (achiness, fatigue) and so does my vision problem, which makes me think the two are linked. I also take methylation supplements as this has been a serious issue for me in the past but if I've overdone it and feel my inflammation has gone up I get the eye issues again.
Anyone have any experience of this? Or any idea what it might be about?
Frankly I havent given the whole thing a massive amount of thought as to be honest the vision stuff is the least of my worries and is little more than a minor annoyance compared with some of the other symptoms I've had to endure.
Plus I sort of feel that if I can fix the CFS my vision will hopefully just sort itself out on its own accord. But it'd be nice to have some idea of what's going on here so any input would be great. Thanks in advance.
Hugo
It's a very strange sensation and I've not encountered anyone else with the same issue or read about it anywhere, but it's basically that when I try to follow the words across the line (like this line) I find it difficult to control the "aim" of my eyes.
It's almost like my eyes are in a wave machine and the focus sort of veers above and below the line a bit, and then at the end of the line when I try to go down to the next one my aim is always off.
It doesn't sound much but it really prevents me from reading properly and unless it's something I'm really keen on reading I just give up as it's too frustrating. If I use a pen or something to direct my eyes it becomes easier but I can't do this when reading books or computers so it tends to just be articles on my phone.
Prior to developing CFS I never had these eye issues (I had previously had cognitive and mental issues for many years before anything physical developed) and since improving my physical issues a bit over the last 3 years my eyes have gradually gotten a bit better.
For clarity, I don't have any problems with my vision which is pretty perfect as far as I'm aware, just my "eye coordination" and it only really manifests itself at all when I read.
It tends to get worse when my inflammation worsens. Like for example I have SIBO and if I take medication to address that my CFS symptoms worsen (achiness, fatigue) and so does my vision problem, which makes me think the two are linked. I also take methylation supplements as this has been a serious issue for me in the past but if I've overdone it and feel my inflammation has gone up I get the eye issues again.
Anyone have any experience of this? Or any idea what it might be about?
Frankly I havent given the whole thing a massive amount of thought as to be honest the vision stuff is the least of my worries and is little more than a minor annoyance compared with some of the other symptoms I've had to endure.
Plus I sort of feel that if I can fix the CFS my vision will hopefully just sort itself out on its own accord. But it'd be nice to have some idea of what's going on here so any input would be great. Thanks in advance.
Hugo
splusholia
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Hi, I am an English Lit graduate (so I love books!), with severe ME. I have to say that for the first three years of having ME I could not read at all. It was very distressing. Sometimes if I accidentally tried to focus on a word (eg. on a box of medication or something), I would become disoriented and have to rest for hours. It was truly awful.
I’m now four years into having ME and I can read novels and poetry again. I just finished Margaret Atwood’s latest book and loved it. So please have hope!
I don't have that exact problem, but at some point in my ME I developed double-vision, which seems to be another form of 'eyes not aiming properly'. I think ME affects neural firing, so it's reasonable that it will show up as some coordination issues. Like you, I'm just accepting it as an ME issue that can't be treated at this time and would probably go away if our ME was treated.
Rufous McKinney
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really really blurry- which leads to aching and reading very much is very tiring...
Blurry might be mis-coordination of the lens muscles. Apparently the muscles controlling the eye are considered to be inside the BBB. While I don't seem to show any problems with other muscles in my body, I'm not too surprised to have problems with my eye muscles.
Rufous McKinney
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Just returned from a supposedly competent eye exam.
Blurry here is partially- my eyes pour....mostly. Occassionally they are dry but mostly they are swimming in liquid....
They are squeezed. Your looking out of a puddle.
I'v e had issues with driving after dark for years...because of puddling, glare...
I’ve never been able to read ANY books(not Including children’s books) from start to finish...was supposedly smart as a kid in school but I never read any book I was assigned to read, it was impossible for me. I always skimmed through the pages when reading or studying, I was also a great crammed. Paying attention in class while the teacher spoke was usually very easy, so I guess I learned that way.
As an adult I realized I would buy books I was interested in but they would only pile up, never can quite get around to reading them. I can read for hours online, I can read medical papers, I can read about my hobbies etc. It would seem like I can read almost anything online (never have tried a book I wanted to read though) but paper is my kryptonite. I’ve been diagnosed with ADHD so I chalk most of it up to that...but man I’m envious of my wife and daughters and how they can read books that look like bibles. I wish I had a better understanding of this problem.
As an adult I realized I would buy books I was interested in but they would only pile up, never can quite get around to reading them. I can read for hours online, I can read medical papers, I can read about my hobbies etc. It would seem like I can read almost anything online (never have tried a book I wanted to read though) but paper is my kryptonite. I’ve been diagnosed with ADHD so I chalk most of it up to that...but man I’m envious of my wife and daughters and how they can read books that look like bibles. I wish I had a better understanding of this problem.
Dufresne
almost there...
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I was once a fairly keen reader, but I haven't been able to read more than a short paragraph at a time since 2013. This is actually due to a problem with my basal ganglia (now understood to play a role in language processing). I'm generally okay in conversation but reading taxes me far worse. Though when I'm in a crash I've to be far more careful about my word load written/spoken/whatever if I want to come out of it.
starlily88
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So sorry about your eyes.
According to the Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners there are Neurosensory, Perceptual and Motor Disturbances, which include Inability to focus Vision, Impaired Depth Perception, muscle weakness.
Slower performance in visual imagery and motor tasks (ventral anterior cingulate cortex was active when controls in study made an error but NOT in patients with ME).
I downloaded this Consensus - about 27 pages, and it has detailed medical ParaPhysiology of ME includes Nancy Klimas and David Bell. It is awe inspiring to see how much many ME patients have - I have learned a lot from this. Let me know when you fix your ME - unlike you I have it for very long time, and it has gotten much worse, which is not unusual, and it can't be fixed.
Not to discourage you, because for years I could do "normal" things with 12 hours sleep/day.
When I look back I was quite lucky - now, not so much
Starlily88