The basics
It started in the early '80s as a severe eye/neurological problem, involving serious hypersensitivity to light. I'd been given atropine eye ointment, and it changed the whole behavior of my eye muscles, making them go into spasm and stay that way whenever I was around light, or tried to focus on print. This has only become worse and worse ever since. It's not just painful; there is also an extreme "current" or "electricity" that results throughout the body, but that doesn't begin to describe it. It's horrible.
In 1985 I acquired Environmental Illness (also called Multiple Chemical Sensitivities... EI or MCS). It looks as if the EI resulted from the nervous system problem I already had; either way, it's all one interconnected phenemenon now. EI means that one's system reacts to everyday substances that most people have no difficulty with, a form of allergy, but mainly to chemicals and synthetic products, especially man-made perfumes. Reactions can be severe and life-threatening, and can take any form, but also can be very hard to characterize in words.
This is not some sort of technical blog for medical experts, nor is it just a listing of symptoms. It's about the experience of a human being trapped inside a sort of invisible jail cell created by symptoms, with soundproofed walls. I'm sorry if that sounds melodramatic, but it isn't. The symptoms themselves (partly bad memory/concentration, but it's not that simple) make it very hard to talk about or describe the condition. I keep going "blank", forgetting... it becomes almost impossible to process information in my head. That's the only way I can think to put it. Therefore, getting help has been impossible. If your communication is terrible, how can you give doctors or others the information they need in order to help you? How can you persuade people who doubt you?
This blog is an attempt to get around that problem, and to talk about what it's like to experience all this. After 29 years, I have to start to be heard.
posted by Magnus Greel @ 5:43 PM
3 Comments:
I was so moved by your descriptions and writing (even if YOU feel it isn't getting across). First off, as confusing and overwhelming and isolating and hellish this is/can be (I suffer with some similar issues), you still are very articulate. Even in your struggle to convey, or even with mind-blanks, I hear you, and can relate!
Maybe it all makes so much sense to me because I, a former WRITER, struggle to describe what has happened to me physically. And continued for 15 years.
I use a lot of words and phrases like "drunk", "out of body", "numb" and "constant short-term memory loss" alot!
My condition started very stroke-like. It was ruled out, but I was not convinced. I was then considered to have MS for three years. Then that was ruled out. I'm now in the CFS/Fibro/MCS category, but MS felt much more accurate, what with all my neuro stuff that literally came on overnight (along with left-sided paralasis, pain, and then uncoordination and optic neuritis). the optic neuritis comes and goes, but my eyes have never worked well together since. I look at others with my left eye, mostly, now. Recently, I'm having severe blurriness, which is much worse in a lighted place with too much stimuli).
But enough about me for now. I have yet to read more of your story.
My point was to tell you HOW much I understand the frustation and utter loneliness I feel when trying to describe something that I live with every day, but know NOONE else that relates to it!
Not to mention living alone and not being able to commit to plans.
I DO have hope, but it waxes and wanes. Others sharing stories, like you have, keep me slighty a bit saner.
Hang in, do!;) I'll try to keep in touch.
Helene
ps--i had found your blog while on Planet Thrive, in the forum.;)
Helene--- Thanks very very much for saying everything you did-- and for following this blog. More later when I can, I hope.... horrific night.
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