Visual Issues

Everyone's Lyme Disease affects them differently, this is how mine are affecting me.
 

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Double Vision…although I would call it triple vision, these photos depict close to what I see when looking at things.  I think these images are good and (hopefully) helpful for others (like doctors) to better understand double vision issues…because it is not really like you see two or three moons…you can clearly tell what is the moon and what is extra, so the old standby test of how many fingers am I holding up doesn’t really cut it…because you can tell what the real object is…and my brain readily compensates for this.  I believe that my brain devotes most of its energy to compensating for this.

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Glow Around Objects…although this photo is taken at night with an obvious light source, which I do get this sort of halos around lights…but this is not what I mean.  It is as if the objects I look at sometimes seem like they are more illuminated and in that give a residual halo or glow.  It happens during the day, I notice it more outside…and at times it is like colors also seem more vivid…like the rich, deepness to the blue sky…or the sharp contrast with a white birch tree…and in that sharpness the white on the birch trees seem to give off a glow.  I am not sure if I am noticing this because the rest of the time colors seem so dull…but it seems to me more-vivid than normal.

 

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Glared Vision…as though there is a subtle white haze…it reminds me, or rather my reaction to it, reminds me of the glare that happens to a laptop screen when you are outside with it…a part of you wants to wipe it away, to clear your vision so you can see again.  So it is not like you can’t see…I can, I can identify the images, but it is burdensome mentally…like for this to be overcome to do so is at a cognitive cost.

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Color Dullness…on very rare occasions, color will take on an intensity that is more-so than normal color, but for the most part my sense of color has been dulled.  This is the hardest symptom for me to notice, especially to link as causative to my experience of what I see…but the effect of the dulling of color has been that I just don’t look at things much.  Like as a drive down a street of buildings, I *know* these buildings in my mind…but I do not look at them…remembering instead of processing them.  In ways, this helps ease the cognitive load from my visual issues.  Where it hurts is shopping…the isle is like a wall, a whole…and then I must overcome this to see individual items.  It effects my selection…I am less interested in selecting things…they lack the appeal that they once had.  If I don’t look, but instead rely on my memory of a food, then I can be attracted to it…like I will remember eating mushrooms and be attracted to getting them…but looking at them on the shelf with dull color I don’t, my brain doesn’t, necessarily see them as food…if that makes sense?

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Water Vision…occasionally it will be like there is water between me and what I am looking at…and it will move like a gentle rain on a smooth surface.

 

This is similar to what I call “Static Vision” (which I think is something different) where my field of vision reminds me of static or “snow” on old TVs…but different.  I can’t find a picture of it, but it is like if you printed an image on a piece of cloth…and behind the cloth someone took their fingers and sort of poked into it moving them around a bit…and in the pockets it is more like digital pixels rather than an image, and those pixels move like the static/snow on the old tvs.  This is most the time how my vision is…most of the time I am able to tune it down…or my visual brain compensates for it somehow.  It is worse the less light there is.

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Lightening(?) in field of vision…Not sure what you call it or why it is there…but I get what looks like a lightening bolt, jagged lines, that split my vision in half…it pulses quickly…and although I tend to not fear things or worry, this bothers me and I feel like something is wrong when it happens…like I am going to have a seizure or something.  But it will eventually pass.  It comes and goes.  I will have long stretches where it never happens and then have short stretches where it happens quite frequently.  Sometimes it will just happen once and then not again for a long time.  When a lot happen together, like 3x in an afternoon or 5x in a day, that is when it bothers me…and I get a little disconcerted about it….again, my fear is a seizure which is I can only guess because I had one once so that is what my brain connects it to.   But again, it passes so I don’t do anything about it.
 
The first picture shows better what it is like…only the jagged line sort of cuts and stretches the image in the field of vision and makes lines where the image is stretched.  The second picture really does not depict it very well…and it covers much more (is more wide) of the field of vision.

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Floaters…of course, we all have them I believe…only rather than on a day that you lay there looking at the sky…I have like a thick film or glaze that moves over my eye…which I think accounts for some of the visual disturbances I experience.  I will have to get other pictures and come back and describe this one better…

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Spot…I also have a spot, similar to this only darkened…like a dark brown spot…somewhat in the center of my left eye…I can see it even when I shut my eyes.  It is small, and generally does not affect my vision…or my processing of visual images…my brain tunes it out.

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Visual Processing Issues
Whereas the weird quirky things of my visual symptoms listed above are not a significant bother to me, meaning I can cope with them in my daily life without significant hardship, that said, it is the visual processing issues that I will attempt to describe below, that pose the most hardship and interfere much more greatly with my ability to function in life.

As a brief description, it is as if in my attempts to process visually what I am seeing, it seems to me as if my brain is sometimes not able to keep up with things.  In addition to what seems like an issue with my visual cortex, I often have a hard time recognizing or making sense of what I am seeing.

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Streaking of Images…the first picture shows better how it is…the second picture, however, gives you a better sense of how difficult it makes it for me to navigate through places and visually process what I am seeing.  This makes me have to rely on my memory of what things are.  So, for example, if this was a mall that I visited regularly, then I would know from memory (rather than from sight), that the store on the left is the one I go to.  But, if this were a place that was new to me, that I had never been to before, it poses a significant challenge to find my way to a specific store…and quickly becomes cognitively overwhelming…so much so, that unless it imperative that I go someplace new (like the other doctor my doctor is sending me to) I no longer attempt to go new places.

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Latent Imaging…this is hardest to explain how it impacts my ability to function, but it is like as things move the instinctual part of my brain almost reads it as something new to be figured out (ie like the part that decides if it dangerous of not) and a large chunk of my cognitive power is immediately devoted to figuring out what it is, which is mentally exhausting and distracts me from whatever it is I am doing or from whatever thought I am trying to hold in my head (like to get some potatoes for instance).  It reminds me of like when you wave a feather in front of a cat…it HAS to look at and fixate on it.  At times like this, like when I am trying to talk to someone or trying to do the grocery shopping, I try to remind my brain to just take on faith, like in the picture above, that it is the man’s leg…that that is normal…but my attention will be drawn to it anyways and it is very hard to get my attention off of it to do what I need to do.  Although I think I do admirably with it, this has been the hardest visual issue to overcome and still function despite…it has also been the hardest to hide from people.  Most noticeable in the pool during physical therapy because people move, the water moves, different things are going on…however, like at the pool, where something is a consistent matter, I can to an extent shut it off…like my brain is more willing to accept on faith that it is the water and I am fine and not trigger me as much…but, the drawback is, is that then I don’t see/process the water…like a blind spot of sorts…if it was wavy or still or what else was going on in the pool that day (even if I looked at it or my attention was caught by it) I probably would not be able to tell you because I have selectively turned that input off…so it never registered.
 
Although in my limited daily life I am, I believe, fairly safe and am for the most part able to appear as though I am functioning…these visual issues and the significant cognitive overload from them and the way in which I shut down does make me feel vulnerable.  For example, the first trip to the Courage Center they had me fill out a bunch of forms which became overwhelming and the walk to the locker room just far enough to exhaust me, I stood there starring at a shower curtain so completely absorbed in trying to figure out what it was that I likely would have stood there for hours…and if someone had come along and told me to do something or go with them I would have done it, I wouldn’t have been able to know not to.  Thankfully, my daughter was with me that day.  Or the day we were trying to find the records room at the hospital downtown where the maps on the wall made absolutely no sense…I just sat on a bench trying to make some sense of things…had I been alone…random people talk to you there…I would not have been safe alone there like that.  So my quiet and limited life makes it seem like I am more functional and more able than I truly am.  Which is good in many ways, but if things were to change, for example, if my mom were to go into the hospital…or if I could no longer care for her and had to live somewhere else…or if I had to go to different doctors in places I hadn’t been…I would be unable to manage.

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Stop-Frame Imaging…when my brain’s ability to process images is it is very bad, then it is as if my brain skips frames and I see like stop-imaging…like the individual frames in animation.  Although when this happens, I am usually exhausted to begin with…but will become extremely exhausted and usually just go to sleep.  If I am out, I will immediately not feel well, become nauseous maybe motion sickness…and just need to stop and shut my eyes.  At this point, I am functionally unable to navigate by myself.

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This is very much like how I see the world…

 

…and I do function despite the difficulties of my visual issues.  I hope this will help you to understand what I mean when I say that I am ok going to places and routes that I know, but to go down a new street, would become a tremendous cognitive load…which, on a good day, I could probably do…but there probably would be no reserve left in me to understand, for instance, what someone was saying to me, or function well afterwards…like in going to an appointment in a new place.  Even places that I regularly go, like my doctor’s appointments, there is a significant cognitive load and my capacity is diminished by the time I get there…even sitting and resting, the constant people walking by, bits of conversations that they have, the various movements they make are exhausting.  I cannot shut off (yet) my brain’s desire to understand what it is seeing…it seems to me that this is instinctual and hard-wired in.

 

Even though I may appear at times unprepared, significant preparation goes into preparing for appointments…I make lists of questions I have or things that need to get covered.  I think about what I will say.  I go over it in my mind many times…there is a threshold of amounts of times before it is secured in my mind but I can never remember how often.  While the questions I have are very important when I am at home and in the context that they are…by the time I get to the appointment I am exhausted enough that I no longer know why they are important…only that they were…I manage to remember about a quarter of what I hoped to cover…and I often do not understand what my doctor is saying as an answer.  I walk away with maybe two to three bits of information from the appointment.  I suspect that this must contribute to some level of non-compliance or things taking much longer…but it is hard to know because I don’t know what I missed.  It could also contribute to mixed signals.  Like sometimes she will tell me to think about a test and I figure I must not have communicated that I wanted the test…or her surprise when I succeed in remembering at a future appointment to ask again about the test as if she did not think I wanted it.  I know, I can pick up enough from signals, to know that I am not communicating very effectively…and that very little is being produced from communication…but I am clueless to what or how or the nature of that or how to go about fixing it.  Communicating and processing what I am hearing is another cognitive load…as this is how my vision interferes with or contributes to my dysfunction.

 

Also, I have noticed, that I will often not look at a person’s face when I am trying to say what I have…how would you say…scheduled to say…like my list of what to tell the doctor…if I look at her face, the subtle movements will pull my attention off what I am trying to say, and then am lost.  It is the same for when I am listening.  If I am looking at the person’s face when they are talking there is a very good chance that I am not understanding what they are saying.  At times, I may even be able to repeat what was said, but it does not get secured in my brain enough to make use of what was said.  Again, I do better with people that I see regularly, because I can anticipate their movements and tune out the signals of.  Despite the fact that I used to be able to have the deepest of conversations with anyone, or that I used to give talks to groups, I now cannot really process what strangers are saying to me.  Although I think I do ok in looking functional, nodding at appropriate times, I am unlikely to be able to say anything of value or to have understood anything said to me.

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