Word is that the Visual Snow study will begin next month in June. I am not sure of anything else other than it will be in the UK. I have applied and I hope I am chosen for it, well at least a part of me hopes so, but a huge part of me isn't so sure. My peripheral vision stuff.... you know, they annoying and scary choppy vision is way worse now. It seems like it's closing in more and more into my vision and I am so scared that it will consume my central vision as well. At the moment driving is a complete nightmare. I have refrained from traveling to distant states to be in family weddings and other events just because of this symptom. It makes my life absolutely miserable and frankly brings my mind questioning suicide more than I have ever in my life. **I will add the clause here that I will NEVER commit suicide- I am simply just stating the truth of how I have felt with this symptom**
I hear people complaining about Visual Snow symptoms all day long.... all of these symptoms which I've had for 6 years now and they are a walk in the park compared to this choppy vision symptom. It seems to be sooooo freaking rare in medical literature, and slightly less rare in the visual snow community. I've come across a dozen or so visual snow people who have it as well. It seems even for those who have it super bad, they don't talk about it much and have gone on with life. That gives me some hope, but it doesn't take away the fear I experience when I am even think about driving. I have tried to explain this symptom to others and the best way to explain it would be to imagine yourself looking through an oscillating fan... seeing only fragments of moving objects. The objects appear to strobe in and out while in motion, missing frames making the motion unsmooth and choppy. Imagine blinking your eyes non stop while driving.... this is what my peripheral vision looks like. It's an absolute nightmare.
I can't help but feel sorry for myself.... I think of everyone who is able to drive and get around just fine and do mundane things that they take for granted.... I would kill to have this one symptom go away.
I am so frustrated with meeting doctors who have no idea what I am talking about and who have never even heard of the condition. I hate being my own doctor!!!
I just want to find a doctor who has heard of the condition, or met someone who has this condition - even though mine is VS related, I still have abnormal brain function - I just want to be able to talk to the doctor and them not look at me like I'm crazy.... For the love of GOD, I'm a freaking human being in DISTRESS!! Don't tell me I need to just get on with life.... why don't you slam your freaking head in a car door and YOU get on with life! (Sorry.... I'm frustrated.... I mean.... I really am)
I also feel like a phony when I walk around.... I feel like everyone looks at me just the same as they do everyone else, but I am different and they have no idea. I want to tell everyone so they can chill out when they ask me to do something and get a response they don't want to hear. Believe me, I would love more than anything to hop in my car right now and just drive.... to anywhere..... I miss it so much. I'm stuck.... I feel like my soul is trying to burst out of this zombie body of mine to get on with life, but this miserable sack of skin and bones has is tethered down so well.
I have very few things of hope that I am holding on to for getting better. One of those things in the idea that my symptoms may all be autoimmune related. The one disorder I had before all of this started was Graves disease and my antibodies were and still are through the roof. I have also spoken to plenty of other VSer's who have thyroid conditions. The 2nd thing is Lyme disease.... there is so much controversy out there and I did have a positive test, even though my ID dr says Igenex is 'shaky". I just plan to keep treating it naturally to see what happens. The other thing is the Visual Snow study. Since it's starting soon, I am hoping the researchers really find a way to calm down all of this hypermetabolic stuff and speed up the hypometabolic stuff as well. It just sucks either way you look at it... the odds are against me. But I will take what little hope I have an continue to hang on because I just can't process why a small town girl like myself would have such a rare rare RARE disorder with an even rare set of symptoms to match.
