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Some unknown aspects of (my) CFS - Part One

Posted on 2018.02.14 at 20:21
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Some months ago, I began writing a post about CFS, which I thought I would also post over at my site for real-life friends and relatives, as a part of my Xmas letter.  I thought it would be good to post, especially for my doctor to read about some particular insights I had gained.  I never finished it, maybe I never will.  So, this is the text of that unfinished post....

(Caution: This post has no entertainment value whatsoever).


I have been in a relapse for the past 4 days. First, it seems like something - a swarm of spirochetes or something - is eating my brain, producing a kind of migraine. Sometimes, this starts with the feeling that, : a caterpillar is twisting around in the middle/front of my brain."

Then, it proceeds into brain strain and brain fog. Sometimes, it is like large waves of dirty, fuzzy consciousness flow over my head through my eyes. Sometimes, it may feel like the Gulf War Syndrome guy who described his experience that, "it feels like someone is trying to pull a sock over my head."

Although, it is usually far worse than such contrite examples as these. A major problem with CFS/ME is that society forever underestimates its severity, partly based on it's inane name, or on their natural habit of trying to relate, by saying stupid things like, "Oh, I know what its like! Sometimes I think I have CFS!"

Not to dismiss your feelings, but you don't.

Other very significant problems in society include the paradox of how antagonistic people regard people with this illness. Either the victims are obviously healthy and so are lying about being ill - or are at least hypochondriac complainers - or the victims really are sick and therefore may be preyed upon or avoided.

In fact, I have learnt that both of these attitudes can exist in someone's head at the same time. Deep down they KNOW that someone w/ CFS is really sick and therefore they are bad, and since they are bad they must be lying about being sick - so they are really healthy and must be punished!

There are antagonistic people everywhere - often they are one's own friends or relatives, locked permanently in some childish competition mind-game, of which they are in denial.

Everywhere, there are people roving around who are, at heart, animals of the jungle, just waiting to jump on their next prey, for all the social esteem or power that that might bring. And so they are forever wielding double-edged swords and forked tongues, using catch-22 vices to capture anyone they can, for example: the poor.

"The poor are poor because they are bad. And they are bad because they are poor. They deserve, require, and expect to be put down. And since we are the GOOD, (with money), we have a mission to fulfill this obligation."

This is a dynamic which shows me that man is indistinguishable from ape, or insect, no matter if he may use religion to disguise, (or justify), his passive or active aggression, from himself or others. There are more ways than money to cull the herd.

After the comparatively mild introductions into my CFS relapse, I experience extreme fatigue, beyond fatigue, and or extreme migraine, beyond migraine - usually both, simultaneously. Thought and action may become impossible. But, all along, there is cognitive impairment, even at the camel's-nose beginning, and at the tail-end, of the relapse.

These are the times when little mistakes are constantly being made, snowballing, pushing an entire day back by a week, sometimes. This is the time when memories become decidedly elusive, and one can spend an entire day just looking for one's glasses, or whatever. And nerves are frayed. And everything is difficult.

But the REAL, deeper relapse takes away even this, until one loses one's very SELF. Not only to overwhelming PAIN, but to an eclipsing of the consciousness which lives at the very centre of one's brain and being.

Until they fall liek flies before illness and death, most people equate, "disability," with people in wheel chairs. They have learnt to allow space for people handicapped by impaired walking or motor abilities - thanks, partly, to progressive, hard-fought legislation.

They have even learnt to understand that there are special needs and entitlements for known blind people, known mentally challenged people, or people known to have cerebral palsy.

Certainly, all these disabled people have great disadvantage and suffering and they need and deserve special help.

But people with the likes of CFS go outside on good days, and everyone thinks they are fine. Then, the CFS victim goes home and suffers inside, deeply, for the next days or week or month, PAYING for even the slightest activity.

So, few people become convinced that these people are really sick, no matter what they may hear from the CFS victims, from the media, or from science. They are those very American, "Show-Me!," kind of people, endorsed by their social and religious authorisations.

More than this, people with CFS experience a disability which is sometimes FAR WORSE than those experience by those who cannot walk or cannot see, etc. It is very hurtful and daunting when one can never use one's legs, but to part with one's own SELF? - One's own MIND?

Sometimes, CFS can be as bad as Alzheimers or Mad Cow Disease. Not only is mere motivation lost to the swarming of destructors in the front and center and spine of the brain - complete will and idea of self - and experience or love of being - is gone! One becomes lame, blind, deaf, insane - all thin this one fell swoop, this one attack on core consciousness.

This is more than fatigue. This is more than a fatigue which is more than fatigue. This is something else and far beyond. CFS/ME has been the major chronic illness with the highest incidence of suicide - and for understandable reasons. And yet CFS/ME gets virtually no funding for research, in comparison to breast cancer, AIDS, and other, 'popular or glamourous', illnesses.

CFS/ME is in the same league as the closely-related illnesses: Fibromyalgia, and Gulf War Syndrome. Yet these, too, may even get more funding. If there is ANY advance in CFS research or treatment, it may very likely come from research ELSEWHERE. That means it will most likely NOT be fully appropriate to CFS microbiological or genetic processes.

What caused my latest relapse? It is often impossible to tell, because I am sensitive to EVERYTHING. It culd have been, and usually is, ANYTHING - and everything - in combination and accumulation. It's a bag of goodies, and barrels of monkeys, a basket of deplorables - a barrel of laughs which actually are more like bombs in a mine field...

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