So what do I mean by visual issues? Well, I have quite a list of issues and symptoms, and I wanted to begin by listing them all...At least all which I can recall. Granted, a lot of the things listed below are problematic for more reasons than just visual things; I have other health issues which prevent me from doing them, but for the purpose of this I am just listing how it affects me from a visual perspective. I have had these issues for years (progressing with time), so this is a comprehensive list of ways I am affected.
Things which bother me visually:
- Any kind of scanning. This was most obvious to me in grocery stores or places where I had to scan and look around a lot. I can not remember how many times I ran out of Kroger because my visual senses were so overwhelmed from the scanning & lights that I got in my car and was practically hyperventilating. This also translates to things in my home, but I will cover those more below.
- Reading. Reading also requires scanning. I lose my place constantly, the words get jumbled together, and I have to use my finger as a guide. This also makes me feel so sick to my stomach, makes my eyes hurt, and gives me headaches. Magazines were the worst. I have an inability to flip through pages of a magazine. I get 1/4 of the way through and I am dizzy and nauseated and struggling.
- Writing. Also falling in the scanning category, writing is particularly difficult. Copying text is the toughest though, so addressing Christmas cards felt like an impossible task. Having to look at an address and then back at my envelope to write (and going back and forth) is too much. Also included in writing is using my computer to write. Every blog post you see is written in pieces. I do often do audio recordings if I have a thought I want to put on paper, and transfer over. I can't remember the last time I was able to write a blog post in one go.
- Scrolling. This includes scrolling on my phone or computer. Scrolling through webpages make me so sick.
- Watching movement on TV. You know those TV shows or movies which have that shakey camera? That's 100% a no for me. Also difficult is action scenes, scenes which show any kind of drastic movement, or ones which pan the camera in crazy ways (such as Dancing With The Stars). The worst is 3D movies. I saw Avatar in 3D many years ago and even though I had my eyes shut half the time I had never felt more miserable. It was tough! Sports can be difficult too, particularly basketball which is fast paced.
- Playing video games. I used to have a Wii and my sweet brother bought me an Xbox for entertainment purposes, but I never could use it. That kind of movement made me sick in 2 minutes flat.
- Looking around, specifically in open spaces. I never understood why taking a walk felt like it left me worse off. When I would be outside walking I often felt faint and dizzy. A combination of the light (even on the cloudiest days), and scanning in such a large open space (in comparison to my usual view of my room) is a lot for my eyes. Looking around large areas leaves me overwhelmed and fatigued.
- Coordination issues. I used to always just think I was clumsy, but now I know it's more than that. I struggle with catching a ball because I have no spacial awareness. I often bump or run into things, and I have cut myself (or come close) while opening a box with a box cutter because of this spacial awarenss issue.
- Balance issues. When I am standing I am always wobbling around. If someone tells me to just stand up straight and still I will start tilting left and right and have a lack of balance. If I put on heels then forget about it! I will wobble endlessly, and cant find my balance no matter how hard I try. Standing on one foot to balance (say while putting on a sock or shoe) is physically impossible. Closing my eyes to pray in church was always an impossible task. Thank goodness for the pew!
- Seeing movement. An example would be watching the movement of water. I feel like I will throw up in 2 seconds watching waves of water, even if I am not myself on a boat. Watching a merry-go-round or a train passing by is sickness inducing, and all other things which fall into that category. A flight simulator or those virtual reality goggles would be my own personal hell. If I see motion on TV while I am standing I get so dizzy I almost fall over and can't hold my balance.
- Escalators and Elevators are an absolute NO. When I would ride an elevator I felt every drop and movement, and when I got off I was dizzy. Escalators are much the same, when I got off I was dizzy and struggling. I would take the stairs 9 times out of 10 just to avoid them. This also goes for ellipticals and treadmills. Anything which moves under me leaves me dizzy and overwhelmed and nauseated.
- Sensitivity to light. Grocery store lights are the worst, but UV lights are tough, and some other artificial lights as well. It can vary from light to light, and I tolerate some better than others. Darkness is defintiely my friend.
- Turning my head. This includes flipping my head over, or just turning to the left or right too quickly. I get SO dizzy and feel a pressure on my head. I absolutely can not spin in a circle under any circumstances (even rather slowly), and shaking my head is also a no-go. The dizziness is extreme. This also comes into play when I am in the kitchen and say I am turning from the microwave to the counter, or looking cupboard to cupboard. Any activity where I am doing something other than looking straight ahead is hard. Turning my head back to drink even makes me dizzy.
- Crowded places. I did not understand this until recently, but prior to moving home I really had an issue with crowded places. I went to the mall to go shopping and had to run out of the store because I thought I was having an anxiety attack. The store was PACKED and the sights, sounds, and crowds made me much too sick. Attending basketball games became impossible, and I remember the last one I went to left me with a throbbing migraine and nausea. The lights, crowds, open spaces and scanning were a lot. Crowds at bars were unbearable and overwhelming. In fact, I stopped going out at all in my last few months living alone. Sometimes I could still manage to make it to dinner, but if we went to a super packed restaurant that would be very tough.
- Car rides. This was a symptom which came on slowly but absolutely perplexed me. I first realized I couldnt tolerate riding in the back of the car and needed to be a passenger. This helped for a while until I couldn't be a passenger on busy roads such as interstates. Then I couldn't be a passenger at all and HAD to be driving to handle it. Then driving on interstates became too much, and I had to take back roads and drive slower. Then even in town driving was problematic. Then I couldnt go more than a mile without getting sick. Driving was the absolute worst of them all for me. It was more than just nausea. I felt dizzy, I got clammy, I got nauseous, and if I pushed it too far it would lead to a seizure. It was terrifying. I had to medicate with anti-seizure meds to tolerate even 1 mile of driving. I would be trembling and be overwhelmed and afterwards felt sick for DAYS.
- Air, boat, train travel. Along with car rides any of the other methods of travel are even worse and not possible.
- Bending over. Bending over to open a box or tie my shoe made me dizzy, especially when coming back up. When bending over to pick something up from the floor I always have to hold onto something for support and do it very slowly because I feel like I am off balance and will fall forward. This includes emptying a dishwasher, or anything else where I have to bend forward.
- Dancing. For obvious reasons, the movement of anything of dancing is just a big big no.
All of these listed things are difficult or impossible for me. They make me feel nauseated, dizzy, and fatigued. I get eye pain, clammy hands, hot flashes, pallor, lightheadedness, and feel seizurey. I often say I feel "flustered" and like I want to "jump out of my skin." My anxiety spikes and I liken it to being in a room with a million strobe lights flashing while desperately trying to get out of there. These symptoms are overwhelming and all consuming. I ball up and tremble while having paralyzing anxiety and nausea with a queasy stomach while fighting dizziness. Light, sound, smell.. it all becomes too much. It's like someone plugged my nervous system into an outlet. Every single thing feels overwhelming to a degree that I can't properly put into words. I often cry because it is the only release I have, or otherwise I feel like I might explode from how overwhelming it feels. All I can do to stop it is lie in a dark room and just ride it out. It eventually eases, but sometimes it takes hours, and other times I feel the effects for days.
My world feels really small right now. Getting out of bed and taking a walk outside is really intense. The wide open space, the scanning, and the light leave me feeling very overwhelmed by it all. In the house even things like baking or decorating a tree or other housework would cause me to get sick to get visually overwhelmed. I can't flip my head too fast, I can't get on exercise machines, and I live my life moving very carefully. Everything is done carefully so I don't get dizzy, so I don't move too fast, or scan too much. My world feels much too small, and much too constraining. I do very little and feel like I am instantly fatigued and sick from it. Everything I do is limited by these symptoms, and I have to stop and rest and regroup multiple times a day. I have spent years of my life searching for the answers. I primarily consulted online groups for people with Lyme Disease because I thought I might find a kindred spirit there. I didnt. I have always felt very alone in this. Even after seeing endless amounts of Doctors, not one has ever said to me, "Yes I understand this, here is what you have." The best I got was my current LLMD who suspected it was caused by infections and we had hoped it would resolve and other things resolved. That was the best I had. It was the only real hope I had.
This kind of visual sickness was not the typical motion sickness. It was not coming from the inner ear, and Dramamine did not help. Through my ocular-neurologist we discovered an area of brain damage which we suspect was caused internally (by the Borrelia). This Doctor told me that likely was the cause of my symptoms. He said my motion sickness came from a disconnect in my brain between the eye and ear. There was some kind of damage there, and the two did not connect and work properly, leaving me with these visual issues. Again, the hope was just all being held in it maybe just going away one day.
Well, here I stand in January 2017 and I am now embarking on a new visual & vestibular therapy which prayerfully will heal the problem areas of my brain. As with anything, there is no guarantee. There is just a well trained Doctor who heard my plight and really felt like my issues line up with other patients he has seen, and therefore there is hope. Much of what I have accomplished so far has been built on blind faith. This is much the same, because although I check pretty much every box for this condition, the one big factor which sets me apart is the brain damage happening from an internal cause. All the other patients either inherited it or had damage from something external such as an accident. For me it was something which occured suddenly (starting slowly in 2009 and progressing), with no family history, and no outer trauma. So I am a new kind of patient in that regard, and also a new test subject without that same level of guarantee attached to it.
Many patients who have this condition notice that after a while their body starts to compensate to help them. For example the brain will shut off one eye, or create tunnel vision, or other conditions such as that. It is a survival mechanism because motion is too difficult to bare. The body slowly closes the patients world down by reducing motion as much as possible on it's own. I believe this is why I also developed Convergence Insufficiency (which I was diagnosed with a couple years ago). Convergence Insufficiency is when the two eyes can't work together and the brain shuts down one eye to compensate. These patients have spacial issues, often bumping into objects or not understanding how close things are to them in the world. This was and is a huge problem for me, which I now strongly suspect developed as a defense mechanism. It is also why it improved a bit with CI specific visual therapy, but then worsened when I stopped. The root cause itself was not solved yet.
The most interesting part of all of this (at least for me), was how it affects the autonomic nervous system. This condition keeps the body in a constant flight or fight mode. The autonomic nervous sytem becomes revved up, and stays revved up, and it puts a huge strain on the body. If you have read my blog for a while you know how much trouble I have with my autonomic nervous system and how my body stays in overdrive and I am very overly sympathetic dominant. With therapy, this has improved for people, and I am prayerful and hopeful that will be the case here as well.
I will begin daily extensive visual therapy for this condition. It will be hard. It will be uncomfortable. I will likely be blogging on here much less, and be much less present so I can devote myself to it 100%. Some patients get worse before they get better. Most all patients feel terrible during the visual therapy, and I fully understand and accept that it will be tough, but I am determined. And I pray that this will help. All that I can do is try. I plan to live in the moment and take each phase step by step. I will be blogging all my experiences on a separate sub blog, which I will make public when I am further along/finished. I havent decided just yet when I will put it out there, mostly because I want to be sure of what I conclude before I make it public. It will be more of a tool for me to look back and see how things do or don't progress. I will also write more about this condition on that blog, but for now I don't want to invite too many questions (there is very little about it on the internet), by calling it by name. Mostly because I do not know if it will work, and I would hate for someone to find my blog by it's name and either 1. get unrealistic hope, or 2. get discouraged. I hope to be able to share more with you all on it's "official name" and diagnosis in the future.
For now I will sign off and wish everyone a very happy 2017. I will blog and be on social media as often as I can, but if I don't reply to your emails etc then this is why. I also ask for prayers in every which way. Prayer that its successful, prayer that it's tolerable, and prayer that this is what I have been so desperately searching for.
Much love to everyone