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Getting Glasses When You Have ME-related Variable Eyesight

Discussion in 'Lifestyle Management' started by Ysabelle-S, Oct 30, 2017.

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Have you developed problems with blurred or variable eyesight since falling ill with ME?

  1. Yes

    35 vote(s)
    94.6%
  2. No

    0 vote(s)
    0.0%
  3. Not sure

    2 vote(s)
    5.4%
  4. I've developed other eyesight issues

    0 vote(s)
    0.0%
  1. Ysabelle-S

    Ysabelle-S Senior Member (Voting Rights)

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    When I first fell ill with the original virus, my eyesight seemed to coincidentally get worse. I had to go to the optician who prescribed reading glasses that were horrendous to use. The next optician I visited a couple of years later thought they were way too strong for me. But I did have problems with blurred eyesight early on, and it was variable. The second optician a couple of years later also prescribed a pair of glasses I couldn't use. And one of the opticians I saw was very dismissive of the variable eyesight issues in ME, just saying that everyone has variable eyesight. I decided to forget about reading glasses, and fortunately my eyesight improved.

    However, in the longer term, eyesight always deteriorates with age, so at some point I'll need to do something about it. I know some of you have different strengths of reading glasses and you just choose the strength you need at any one time.

    If anyone has anything to contribute on the blurred and/or variable eyesight, feel free to post here. It does seem to be common enough for research to have been done - I think we're supposed to have problems with tracking lines in books, amongst other things.

    Obviously seeing an optician every few years is advisable because it can pick up on other medical issues too.
     
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  2. Trish

    Trish Senior Member (Voting Rights)

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    I seem to have particular problems with eye tests that have got worse over the years, which I think is something about accommodation. As I understand it, that means being able to change the focus of the eyes quickly when moving from close up to distant.

    The effect in eye testing situations is that my eyes can't keep adjusting to the different lenses they stick in front of them in quick succession, so I have to keep asking them to slow down and give me time for my eyes to adjust.

    I have been short sighted and worn glasses for 45 years, and also have astigmatism, so the prescription has to be just right. I've been wearing varifocals for about 20 years, which helps because, to some extent, I can move my head to get the right focus.

    The last time I had my eyes tested, I had it at home - in the UK if you're disabled or over 60 you can get a home test. Even then by the time he was getting near the end I was so shattered I just said yes that's OK, when it wasn't, and had to send the glasses back and ask for a retest (which they did at no extra cost).

    The other thing that's happening more recently is that my vision blurs when I'm tired, and on waking I can't focus my eyes to read for several minutes as I used to be able to do.

    All of this could just be natural ageing process and nothing to do with ME!
     
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  3. JCB

    JCB Senior Member (Voting Rights)

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    I've been wearing glasses since I was eight, and they started calling me prof at school. Short sight. Initially I was unusual having the same prescription for each eye and no astigmatism. Both of those things have changed over the years. I don't think this has been significantly affected by ME but getting out little means I am never looking at infinity.

    I had three pairs made up after my last test - close reading, computer 1.5 metres and distance. The latter scarcely get used now and most of the time I wear the middle pair. I am overdue for a new test.

    I didn't get on very well with varifocals but I do appreciate the advantages. The big problem is when reading, especially a newspaper. With reading glasses I can scan the page moving only my eyes, but having only a limited sweet spot in the varifocals I found I had to move my head and that could be tiring when bad. Shortly after I got the varifocals I got new reading glasses as well.
     
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  4. MsUnderstood

    MsUnderstood Established Member (Voting Rights)

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    My vision has changed very little over the years, and with respect to needing glasses for reading, my eyes are more like someone in their 40's than in their 60's. However, accommodation as @Trish described above is a huge problem. If I've read during a long wait before an appointment, everything looks blurry on the way home, and it takes several hours for my vision to return to normal.

    Post ME, blurry vision has always been one of the first indications I've done/am doing too much. I've learned to aggressively rest for up to a week before getting my eyes tested for new lenses. Otherwise, the vision test is inaccurate, and my new glasses a waste of money.

    One thing I have wondered . . . does anyone else experience what my husband calls "ding-dong" eyes? Apparently when looking at him, my eyes rapidly move from side to side -- something he says he's never seen in anyone else. I've certainly never seen it in him (unless he's demonstrating the effect). Although he considers it "cute" and just a part of me, I can't imagine how I must look to others.
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    Currently trying my first varifocals (aka graded lens).

    Takes a little getting used to, and probably not for everybody, but nice to be able to focus on anything without swapping glasses!

    The main limitation so far is that they are not so great for sustained reading. I still prefer fixed focus for that, especially for printed text. Not that I do much reading anymore.

    The graded ones compensate for the variable focus problem in ME quite well. Though obviously doesn't work as well when the focus is varying by different amounts in each eye, which happens sometimes to me.

    My graded lens are what they call occupational, meaning they cover from reading distance out to about 750mm (bit over an arm's length). But it really needs to go out further to 1000mm (about a yard), maybe a touch more, and I will be getting them changed.

    Also plan to try a full range set of graded lens that cover from reading distance to the horizon, for general purpose use, so I can leave them on all day, and just swap to standard fixed focus for any significant amount of reading (possibly as occupational bifocals set at reading distance and computer screen distance).
     
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  6. Graham

    Graham Senior Member (Voting Rights)

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    Does this mean that I've only got a few weeks left before it happens to me?
     
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  7. Trish

    Trish Senior Member (Voting Rights)

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    You should be OK if you start counting backwards immediately.
     
  8. Wonko

    Wonko Senior Member (Voting Rights)

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    Is this some modern substitute for sheep?
     
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  9. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Sounds like nystagmus?
     
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  10. Ysabelle-S

    Ysabelle-S Senior Member (Voting Rights)

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    Everyone who's voted so far has developed eyesight problems.
     
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  11. MsUnderstood

    MsUnderstood Established Member (Voting Rights)

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  12. Graham

    Graham Senior Member (Voting Rights)

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    I haven't developed any problems with my eyesight over most of my 18/19 years with ME, until very recently (apart from the usual deterioration that comes with growing old, but actually benefits people who are short-sighted). But then, my testosterone has dropped a lot. So until I get that sorted, I have no idea whether the ME is a factor or not.
     
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  13. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Yes, however, I think in my case it is age related and most definitely computer related. I don't think that ME has anything to do with my blurry eyesight. Most of the blame there lies with the internet and ME forums and FB.
     
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  14. markiemark

    markiemark Senior Member (Voting Rights)

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    Oh goodness, where to start... I'd argue visual stress/deficiencies/agitation/processing problems are likely the biggest contributor to PEM for me. I have over 8 unique symptoms when it comes to visual processing. It even seems to effect my perception of sound. Since getting CFS, this has definitely become worse, particularly for blurring eyesight. I honestly don't know enough about how it's all connected.
     
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  15. Wonko

    Wonko Senior Member (Voting Rights)

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    Oscillopsia (bouncing or jiggling of the vision) , that's the bunny, never met anyone, including doctors or opticians who had the faintest idea what I was talking about with that.

    Also blurred vision, variable.

    Inability to track or sometimes even see moving objects, blurring of moving objects/text, even when my vision is not otherwise blurry.

    Occasionally going "blind", no idea what that's about, it just dawns on me that I can't actually see anything, and haven't done for a "while". No sudden OMG I can't see, just a gradual realisation.

    Other things, other bizarre things. Seriously odd ;)

    edit - ah, may have answered the wrong question here :(
     
    Last edited: Oct 31, 2017
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  16. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Thank you. That's the one.

    I have a 'memory' like that but always thought it was a dream. Maybe, maybe not.
     
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  17. markiemark

    markiemark Senior Member (Voting Rights)

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    I only feel blind if I go outside without sunglasses on. It's just an absolute mess of white light and images I can't take in. (Only in the daytime of course! If I do it at night time, then that's just me being pretentious :rofl:)
     
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  18. Wonko

    Wonko Senior Member (Voting Rights)

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    When "blind" I can see edges, of moving things only, no colour, it's all black*, no shades, but somehow I can perceive the movement, and to a limited degree, the shape, until the object, normally a person/people or a vehicle, stops moving. Doesn't work with stuff moving on a tv, it's only real things. It registers as vision, but as I say I have no idea why, there is nothing there to classify has having seen something.

    I did say bizarre didn't I ;)

    There's other things occur on occasion, but not sure how to describe them.

    *edit - not the black you'd get if you were in a very dark place, down a mine say (been there lol), that has colour, your eyes make colour, little bits of it, if there is no incoming signal, this is black black - nothing.
     
    Last edited: Oct 31, 2017
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  19. markiemark

    markiemark Senior Member (Voting Rights)

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    @Wonko Goodness, that must be so bizarre to experience!
     
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  20. Wonko

    Wonko Senior Member (Voting Rights)

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    It's just...erm.....impatience turning to concern, the longer it lasts, it rarely lasts longer than a few minutes subjectively, but a few minutes outside, in a busy town centre, when not used to it is...fun.

    I don't seem to react the way most people do to things, I never have, it's only since I started having to try and explain things to people like the DWP that anything got mentioned at all, I've always just accepted that things are the way they are, from moment to moment, that I am me, and when interesting things happen I'm much more likely to stop and observe/study them than panic or worry, although eventually anger/frustration etc. can make an appearance if I get stalled too long. Apparently most people don't react this way.

    edit - but this is now getting seriously OT - at some point I may start a Wonko's a bit Weird thread for all this stuff. lol
     

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