Watch this space
This post is a sort of "placeholder", or I.O.U.. I need to try to describe the worst part of this condition, the part I never got to in previous posts, but which is the hardest to describe. I can't do this well right now. For now, I'll just say that a severe "hollowing" or "shallowing" of thought, emotion, and experience are involved, brought about or worsened by light, eye pressure, and some environmental factors, and pills I'm forced to take for other symptoms such as aspirin/caffeine powder.
I thought I'd come up with some very good adjectives for this. Calling it a hollowing or shallowing of emotional experience seemed like perfect wording, to me. It turns out, though, that those words mean absolutely nothing to people. It's as if I'd used no words at all. That basically kills any hope I'd had of communicating this, since apparently people cannot or will not grasp any words I can think of to describe the phenomenon.
I might need to find someone who can begin to understand, before I can try again to find other words. It's hard work fighting against the memory and concentration problems to communicate... and I guess I need to know someone's listening before I try again.
posted by Magnus Greel @ 3:58 AM
4 Comments:
Yes, am trying to understand your emotions...
V.V.--- ...or loss of them...? Thanks very much for reading and trying to understand. I'm actually startled to see a reply here.
Hello Magnus: I have a friend that has the Multiple Chemical Sensitivity issue like you. She is at a point where she started wearing a gas mask to go to the store to buy clothes, food and go to work. She makes special appointments/ requests for accommodation with work, clothing stores and hair salons, etc. to accommodate her needs. I am hoping you can do the same.
It sucks being in your situation. No one begins to understand your pain or how to help. Sometimes they just can't.
I have had Fibromyalgia, Foot Neuropathy and a host of many "mystery" illnesses. I'm also allergic to perfume and it can cause my Fibromyalgia to flare up. I know for me I was very lucky in that I made it to a doctor that has an understanding of my various issues. I take Neurontin and other stuff that at least has me working part time. I also ask my friends and co-workers to not wear perfume when they come to my home, car or work. I received money from the Department of Rehabilitation in California to start my own home based business. I have to go to the doctor a lot so the business helps. I don't think I could otherwise hold down a job from so many absences.
I encourage you to call as many government agencies as possible and look on the Internet for support groups, financial support and support to get back to work.
Teaching hospitals can be a big help as well because the newer doctors and the teaching physicians are up on the latest technology and treatments for your type of illness.
I just encourage you to not be afraid to ask for help. It is a catastrophic situation. Further, I like to focus on what I can do today and not what I can't do today. Sometimes, just getting up brushing my teeth are huge accomplishments to be applauded!
Just never take no for an answer even from yourself.
My main mottos or mantra sayings of the day are: 1) Failure is not an option. It is too much pain otherwise. 2) You don't ask you don't get.
VW... Thanks *very* much for the detailed comments and for following this blog. I'll give a real reply when I'm more up to it....
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