Questions and Answers (Q&A), Our Way
Insightful, Conversational, Encouraging, Long-winded, and from Experience Cognitive, Thinking, Mental Processing and Memory Questions
Q&A Index See also: Practitioners Page: Eye Care
See also: Practitioners Page: Cognitive Rehabilitation See also: Resources Page: Cognitive, Memory Section READING, SEEING, UNDERSTANDING PROBLEMS VISION PROBLEMS ... Visual symptoms The visual symptoms typically encountered with CFS patients include:
Q.
Reading has become so difficult for me as my CFS and FMS has gotten
worse. Do others have this problem? It is very inconsistent. Some days are pretty good and others are awful.
A. Elly took the time to write:
There are many different forms of new difficulty for people with these conditions. You are not alone! Successful reading requires lots of mental and physical energy. It is a complex combination of seeing, optical processing, brain processing, and memory. Reading is likely to be much easier on days with more energy with less stress diverting processing power. That's why it's important to acknowledge new physical limitations, reading our body's messages more honestly while seeking new ways of stress management. That we may positively affect our reading and comprehension by paying attention to our bodies and making adjustements is an indication CFS/FMS/OI/MVPS-D have inflicted no permanent damage as some have suspected. Here are some things about reading and comprehension people with CFS and some with FM report along with some of our personal experiences and observations: Sometimes reading becomes a matter of seeing, being able to focus enough to recognize things. Sometimes we can recognize words in a kind of hyper-focus, but not groups of words. Hyper-focus makes it hard to get the meaning of a sentence. Sometimes we can't remember the words and paragraphs we just looked at, so what follows makes no sense. People often find themselves reading the same line, paragraph, or even pages over and over, having no memory of anything they've just read. Thus the old joke: we only need one book in the house because we never remember the ending...if we get that far. Often, we suddenly forget what a common word means or the spelling is suddenly unrecognizable! There are also positional problems.... if you are sitting up and sitting still to read, blood flow to parts of your brain may be adversely affected. The brain requires good blood flow and plenty of it for you to experience efficient cognitive processing. Leaning over a table to read physically and literally reduces blood flow to the brain in normal people and is a bigger strain on an already tired body. Many with CFS can no longer comfortably hold the weight of a book in their hands. If lying down, you may experience problems with: the weight of a book on your belly; trying to hold a book; your hands going numb from poor circulation to extremities. A clue for the latter is needing to switch hands or positions to hold the book. Not only are these problems distracting, they're clues your body was already in distress before trying to read. Sometimes just seeing a lot of text is overwhelming enough to be reduced to "shut-down" mode. Print size, the amount of white space, even the type of paper, all affect our ability to focus to read. Some paper produces glare we can become desperate to get away from. Some inks stink, but many CFSers are not aware how smells affect them. Even when we really want to read something important to us, we may give up because we feel so uncomfortable for any of the above reasons without being able to identify anything other than being uncomfortable or feeling overwhelmed. This next part is adapted from an email about reading and editing Toni wrote in August 2006: I love to read though I have to
work at it as I'm slow and have comprehension problems. Imagine
that - enjoying something so hard to do! I remember a lot more of
what I read now I'm down, literally nearly horizontal, and out of the
rat race (reclining as treatment strategy for OI [orthostatic
intolerance] and living on disability retirement).
My lips are almost always moving when I read. I read with my lips as if I were sounding out the words silently. I'm reading out loud what I'm typing now, and I just TYPED it. It would seem unnecessary to "sound out" the words since I thought of what to write, decided to write it, typed it and have no trouble pronouncing any of the words I typed. But I do it, all the time. And I'm becoming ok with it, happy to be able to read at all. Readers like me struggle, which often leads to a hyper-focus on what we CAN see, like mistakes such as typos, double or missing words, and poor grammar or confusing punctuation while struggling to understand the material. People without CFS or other reading problems seem to plow through or gloss over mistakes more easily. For me and others with our kinds of cognitive problems, it's often necessary to hyper-focus just to discern meaning, if possible. Yet, often, meaning is indiscernible or unworthy of the struggle. This, too, seems to bother me more than some other people. Arrrrgh. Editing other people's text gives me a constructive outlet for my frustration. I like to edit because I can't help finding simple mistakes and grammatically confusing language which completely distracts me from the point of what I'm trying to read. Reading through typos and too many words is like shopping for my favorite ginger ale: Shopping is hard enough for me in the first place. Then, my favorite ginger ale is often behind the root beer, so, I get stuck down on the floor of the store, moving around bottles of what I don't want in order to find what I want. It looks obsessive to anyone who likes ginger ale less than me, but I consider it necessary and worthwhile, often fun if I have the energy and time and my hunt is successful. Sometimes I move the bottles of root beer only to discover ginger ale is not to be found, just as the meaning of some things I read remains in the writer's brain or buried in too many words on a page. Or, I give up, because my brain/body can't proceed. I get stuck on the floor of too many typos, but especially too many words and confusing grammar and punctuation muddying the meaning of a sentence or paragraph or the whole article. I lose the big picture looking for meaning in a muddle and that's NOT fun. If I can edit, that is, make a difference, that's fun. Writing for the Nova support group of people with similar struggles, Elly and I work hard to edit for clarity with as few choice words as well spelled as possible. Sometimes we edit meeting summaries three or four times before emailing them to CFSupport members. We know more editing might make them even clearer, but we accept our own energy, time, and cognitive limits. We accept no matter how clear we are, many who receive it are likely to have trouble reading it. I've taken reading classes designed to increase reading speed and comprehension, paid good money for at least two. Reading classes I've attended include instructions to see a whole page rather than focus on individual words. Using a ruler, for example, to lead the eye down the page rhythmically with some speed, rather than right to left increases speed and comprehension. When I'm able to concentrate well enough to do this, my comprehension increases. However, I'm unable to maintain focus for very long. I dropped out of those classes, finding it harder and harder to get there. Similarly, I was assigned reading classes in 7th grade due to my low testing scores for reading speed and comprehension compared to all other categories of standardized education tests which were good or better. On Wednesdays - reading class day - I habitually left my eyeglasses at home, something I never, ever, did on any other days throughout my remaining 6 years of public school with eyeglasses. Seventh grade reading class was torture for me unless the teacher became distracted with telling stories as he often did. The reading teacher was a lovely man, who knew our needs better than the administrators, thank goodness. Speed reading instruction misses the problems of our sets of conditions. Reading while walking on a treadmill, in fact any movement increasing blood flow to the brain, but not too long, not too fast, and not too strenuously is speed reading and comprehension help more likely to work for me. In addition to reading problems, access to what I've read or heard or seen is complicated. Often I don't remember things mentioned by others until given more clues than most people think necessary. This habit of my brain is what cinched my bosses' desires to replace me, leading to disability retirement. Understanding how my brain accesses information is good news. It means information is not lost; it's accessible if I and those with whom I converse are willing and able to find the threads my brain needs to get to the information. The bad news is, those people are not likely to be employers. No two people's brains work alike. Getting the big picture is necessary in order to edit well, which I do adequately for the purposes of our support group given enough time and energy. I'm grateful I'm able to contribute in this way. People who miss the big picture when reading because they're struggling may find it too hard to read at all. Many people in our group have moved through the struggle and do much better or experience the symptoms and problems like a roller coaster, better today, worse tomorrow then better again. We often hear people describe struggling to read or file or make decisions. Recognizing and understanding the problems and symptoms may provide relief. Number 1, we are not alone; number 2, we are most likely intelligent enough; number 3, what we have trouble remembering this moment may reappear later and more and more often. Member quotes about reading "I frequently find it more
difficult to read early in the morning than later in the day. That goes
back to my general difficulties with mornings, but it really does take
a while to clear the cobwebs enough to process information.
Toni did speak for me above when she described hyper-focusing and I'm realizing that this 'obsession' is very likely what made my full-time job so stressful. I had lots of material to wade through, and I would get so focused on specific items that I would get bogged down and be unable to keep up with the work load." - D Q. Does anyone else experience early cataracts? Also, I have eye floaters, what
can be done about them? I'm wondering if they are caused by my Fibro /
gluten intolerance / CF? Elly took the time to find some links and exceprts: What is a Cataract? - MedicineNet.com Cataracts
are very common, affecting roughly 60% of people over the age of 60.
... Other factors that may lead to development of cataracts at an
earlier age include excessive ultraviolet light exposure, diabetes,
smoking, or the use of certain medications, such as oral, topical, or
inhaled steroids. Other medications that are more weakly associated
with cataracts include the long-term use of statins and phenothiazines. Medical News Today: Risk Of Developing Cataracts Increased By Anti-Depressants (SSRI's)- March, 9, 2010 Visual Dysfunction in Chronic Fatigue Syndrome By Lesley J Vedelago, O.D Visual symptoms The visual symptoms typically encountered with CFS patients include:
Toni's Answer: I
have always had vision problems. There is research suggesting reading
at desks with head bent has increased near-sightedness due to neck
capillaries being the smallest in the body. Bending head strains
capillaries, limiting blood flow to brain and eyes. Adequate flow of blood and adequate circulation are concerns for some CFS, FMS and, especially, Orthostatic Intolerance patients. I have had Orthostatic intolerance all my life and was diagnosed with cataracts in my mid-40s. So far, no surgery has been recommended for cataracts, but my vision is such I expect surgery is imminent. My eye doctor was excited for me to face surgery since my lens are replaced and I will be able to see much better without glasses, will need much lighter vision correction glasses. Eye floaters are there to stay. They are bits of viscous membrane. I have had them my entire adult life. They may become smaller but do not disappear. I experienced scary, crazy lights, colors showing up in my field of vision 14 years ago. The ophthalmologist feared blinding retinal detachment. Specialized testing found the more common viscous detachment leaving a big hunk of viscous in field of vision. Eventually, the hunk dissipated into smaller and smaller pieces. I suspect my eyesight may be affected by chronic dehydration and lack of appropriate circulation which is common in Dysautonomia/ Orthostatic Intolerance patients (OI). I have had OI all my life judging by weird behaviours I now see as accommodations to OI. One weird behaviour is rocking back and forth, as if I'm standing on the deck of an imaginary boat, while standing or sitting. Any bodily movement increases circulation of blood. This means my body is smarter than I am. I had no idea why I rocked back and forth. I just know I couldn't stop without discomfort. To increase circulation and manage chronic dehydration, for helping eyes as well as the rest.... -drink 2 to 4 liters (or quarts) of water per day, -add sea salt to your food, -move whenever you are able if only to walk around the kitchen to avoid standing still, for instance, while cooking , doing dishes, -fidget alot while sitting or resting, -recline with head back, feet and legs up which increases circulation, -sleep with head of bed on bricks to get kidneys above legs which also increases circulation during sleep, -supplement liberally several times a day with low doses of the 4 major electrolytes: magnesium, calcium, potassium, sodium (as sea salt). To help move the blood around , you can rock back and forth as if you're standing on the deck of an imaginary boat. See also: Resources Page: Cognitive, Memory Section |
||