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Lets talk Fibro & CFS

Happy Mother's Day to those who celebrate it!

In keeping with the theme this month, it is time to talk about (big word warning) Chronic Immunological & Neurological Diseases in particular two that most of us are aware of and possibly live with: Fibromyalgia & Chronic Fatigue Syndrome. I gathered these bits from various sources mainly because it was easier to let them speak to the issues we face every day then try and do it justice myself.

As good a description as I've ever heard. Fits my life pretty close too.

Kris Oulton
so periodically over the years, (as in, frequently but not every day thank god,) I wake up, go to dress myself; and all i want to do is scream from the pain of putting cloths on.
Now, some of you know my 'conditions' in this regard, but I'd like to point out something that is not always remembered by parents, guardians, teachers, doctors, fashion designers, etc...
Its not pain from body motion, its pain from when the fabric touches my flesh. Sometimes its too cold, or too hot, too wet. Sometimes its because its too heavy, or too lightweight. Today it was the fact that it was touching my skin, period. All those fine little hairs people have on their body to help them guage the sense of touch/proximity... yah, those tiny little things.... EVERY SINGLE ONE OF THEM is hyper sensitive today. It took what little energy i still had today, to just put my cloths on without screaming like i'm being fucking murdered.
Doesn't help that after sleeping for 10 hrs, i still don't feel refreshed because my body never did that thing its supposed to do when you go to sleep. So, i'm faced with two options today: Option1) Stay up be basically be a zombie, with tiny spurts of infrequent energy, unable to focus on anything, difficult to be engagingly social, and completely unable to make decision except "does it hurt? does it require energy/me to move?" or Option 2) go back to bed, forget about trying to accomplish anything today. including laying in bed mulling over floor plans and room layouts, or whatever feat of engineering peeks my interest today. Basically write off the entire day, again. ((and then be silently judged for living in a 'hoarders apartment' because i obviously don't want to tidy/orgainize or clean/thin out etc, and so i'm a dissapointment because i'm not like everyone else who lives according to the economic structure of capitalism and the disregard for materialism (which is as bad as being so cuaght up in materialism that you neglect everything else as well.) ))
So, I stay up and satisfy the requirements of soceity, even though NO ONE IS IN MY APARTMENT to witness, but it feeds the programming placed in my brain from having to go to school in this state for 12 years of life; or I stay in bed, hopefully resting, but accomplishing nothing and being the greatest dissapointment to family and society as there ever could be.
maybe i am narcissistic, psychotic, sociopathic; but i argue perhaps i am, simply because i was forced by society to engage in behaviours that did little except torment and torture me every day. and i mean every fucking day. Sunday? had to sit still in pews or chairs that were NOT comfortable at all and left me ouchie when trying to stand up, and unable to focus on what was being taught when sitting. Saturdays, often was "get out and help me with this project" (rare was the luck i had the day to myself, and usually only half the day) weekdays... at school... yah, well, we all know that story... up before i was awake, often groggy and dizzy but had to maintain a sense of normalcy or else get sent to the nurses office only to be written up as "just tried to avoid classes" and young primary classes were boredom as well as sitting discomforts, oh and a diet filled with every known possible "new" time saving chemical allowed into food stuffs. The things i wanted to do, got the greatest pleasure and least pain from, i was not allowed to enjoy. I had to figure out how to hook up the arial antennas, or a set of rabbit ears and then keeep the volume real low, and pray the signals were strong enough to pickup and watch. TV was 100% evil, except when viewed 'as a family' and then it was only highly controlled content. Sunday evening broadcasts included Muppets, Disney and evening news. I could have done without the news. but anyways... moving oonward....
So now i'm 46, unable to escape the mental judgements of a society that held no compassion or understanding of me; in a time when I should be able to be happy and proud to standup and say Yes, I'm Gay, A Furry, a Geek, A Nerd, and different. Instead, the invisible voices in my head keep the guilt on long enough each day, i feel defeated before i even wake up most days. and the required adaptions to be able to do travel, amusement parks, or things that *used to at least, uncertain now, make me happy, are cost prohibitive for my budget if i want to survive, let alone live.
Sensory tolerances are weakening, so even a night at the movies is fast becoming intolerable to me. that was one of my last few vestigages of feeling 'normal' .
to bed i think, else i'm going to start crying again this time from frustration, not just pain.


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