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M.E., AKA, Chronic Fatigue Syndrome
Update 14-05-2008 in Cyan
Update 01-03-2008 updates in yellow
  For over a decade, I've suffered from the lousy bloody illness known variously as "M.E.", Chronic Fatigue Syndrome, or "Chronic Fatigue Immune Disfunction Syndrome", or the oh so trite-and-stupid "Yuppie 'Flu".
Silverblade on the BBC!
I was mentioned on the BBC, this morning! :) WOOT, GO ME!!! :p
BBC Breakfast TV, were doing an item about music therapy, to help with stress and illness, so I emailed them, and got mentioned today at 8:45 am on BBC Breakfast!

Bit they quoted from my email:

"I've had M.E. for 14 years, and it got much worse about 6 years ago. I've found that music helps, as music lowers stress. Whatever M.E. may or may not be, it does seem to react very badly to stress"

So: TODAY, THE BBC!!
TOMORROW....ZE WORLD!!!!
hehe!

It's small, silly, childish successes like that, that keep you going, don't ya know? ;)


  I didn't tell many people I had this illness for a long time, because you got responses like "Oh, it's all in your head", "You're just lazy!"...while I knew that was far from the case. It was frustrating, and it didn't help that all the medical assistance I was offered was either anti-depressants or psychiatric care!
I wonder how someone suffering from Multiple Sclerosis, or diabetes would feel if some useless jackass said they were a hypochondriac, or a doctor told them it was a psychiatric illness, hm? Well, that used to actually happen to folk with those illnesses...because Medical Science is sometimes not Science, it's just stupid, ignorant and hysterical, a despicable religious extremism, like when doctors didn't "believe" in what was proven to be Lyme Disease, that Multiple Sclerosis was "hysterical laziness", and many other such gross oversights. Sigh.
Most doctors are not like that, but alas, they do exist.

Proof of the abuse ME/CFS patients have had to suffer is in how the Centres for Disease Control in the USA misappropriated funds 10 years or so ago, as those repsonsible thought that ME/CFS was a "mental illness of hysterical menopausal women"...and $12.9 million dollars of Congressional funding, got sidelined to other projects...Congress hit back, forced the money to be refunded and properly spent...and wouldn't ya know...more hard, physical evidence was found...charming, eh? This would not be tolerated for any other illness, those responsible would be sacked, lose their medical licenses etc, but not for this issue...

CNN article on that issue:
http://www.cnn.com/HEALTH/9910/22/sick.tired/index.html?iref=newssearch


  M.E./C.F.S is a real PHYSICAL illness, evidence for this stretches back 80 years, when it was known as "Post-Polio Syndrome" or similar names (post-polio maybe a seperate illness entirely but the similarities are extensive). Following severe viral illnesses, some people simply would not recover, and that's how it came to be recognized as "M.E.": after a series of outbreaks of 'Flu-liek illness left folk with debilitating illness that couldn't be explained.

  What's M.E./C.F.S like? Well, imagine having the 'Flu for the rest of your life. Not a 'Fu-like illness, but the actual 'Flu, you know, the illness that puts you in bed for at least three days and often a week or two, and for a month and longer you feel like a dishrag. What do you think that would do to you?

  One of the peculiarities of M.E./C.F.S. is that you have "Good" and "Bad" days, at random, or following an illness, exercise, or upset, you will have a "Bad Day", and feel absolutely bloody awful. "Good Days" are liveable, you aren't well by any means, but it's not so bad.
For me it's the difference like "I've got the 'Flu like the first week, I'm weak, I can't walk far, I feel awful", and Bad Days" are "Oh heck, I can barely get out of bed, and that takes me all my time, oh shut up, go away, please, don't talk to me, you make me feel worse!" This illness is so bad sufferers commit suicide, not because they are "weak" but because it is HORRIFCALLY distressing and painful.

  Exercise makes you collapse, if you go over a certain limit, which is pretty feeble for most of us, you will collapse, your skin clammy, heart facing, and fainting. Scares you to death, because you feel like you are literally dying.
  The pain goes from annoying to monstrous, I've been burned by red hot steel, had meningitis and kidney s
tones, so I'm used to what "hurts" to compare it ;)

  I'm lucky, I used to be extremely fit, strong, very intelligent and had enough "joy de'vive" that they should have bottled my blood and sold it as a "super strength pick-me up" ;). I also had to deal with a lot of horrible crap, and for that and other reasons, I embraced philosophy / spirituality / introspection as a way to deal with those problems and cope with them.
  Without being that kind of person, I'd probably be dead, by my own hand or some nasty side effect M.E./C.F.S. causes, like heart attack or lymphoma, or just be a nothing, living-dead, doing zilch, just breathing. This illness is extremely ruinous of mind and body, I'd much rather have faced cancer: live or die, than this hell.
  But I go on, won't give in to this rat b*stard illness! Least I can still do art, which is also a good therapy, because it keeps my mind working and lets me do something worthwhile.

  This is my strategy to deal with this illness, until someone comes up with a cure, it helps me. I'm still sick as heck but I'm not so horribly distressed that death seems a nice idea, and that will do for now.


SILVER'S ANTI-ME./C.F.S STRATEGY, or "HOW TO KICK A PESKY PATHOGEN UP IT'S *ENIS!" ;)
1) It is NOT all in your head, no matter what morons, or psychiatrists who've renounced science, Common Sense and Hippocrate's old Oath, say. M.E./C.F.S is most definately NOT a mental problem. Some mental problems mimic some parts of M.E./C.F.S,. but they sure don't show up in blood tests, M.R.I scans, heart tests, nor make you collapse after a short run! Remember this: you are being attacked by a disease. Multiple Sclerosis is not a pyshciatric condition, neither is M.E./C.F.S., anyone who says otherwise can go shaft themselves with a rotating corcksrew!


For example, a physicist won't get double-speak from his geiger counter, hehe ;)
This imprecision, caused by working with very, very variable Human Beings, and doctors being Human too, means there can be problems. Currently, M.E./C.F.S. is one such area, alas for us :(

2) Identify the disease if possible. Many illnesses mimic the broad-spectrum of ME/CFS, such as Chlamydia Pneumoniae, haemochromatosis, Lyme Disease or other forms of Borolleosis (tick borne illness), Mycoplasma infections, mercury poisoning, organosphosphate poisoning, various thyroid issues and so forth, but are identifiable and treatable. ME/CFS alas, is not.

Possible agents or causes of actual ME/CFS, but which we cannnot yet test for:

  • "Cryptovirus" is it's distantly related to Mumps and hides in the nervous system.
  • A chronic form of Lyme Disease, this is disputed but logical.
  • Chronic viral infection of the intestines, this has been recently claimed for CFS and makes sense considering the amount of similar tests showing such findings. It was only comparitively recently proved that most uclers are not caused by stress and bad food, as doctors insisted for decades, but a common intestinal bacterial infection!
  • A hunch of my own is that it IS a syndrome, triggered by the body reacting to an agent it considers a threat to the nervous system & brain. For example, say the findings of chronic low level viral infection are correct, but the virus should not be harmful...what if the body's immune function is over reacting, or mis-firing, keeping you in a state similar to a 'Flu infection, many of who's symptoms are actually your own body's defence mechanism to keep the virus out of the brain etc?

3) Avoid stress. Let me say that again: AVOID STRESS!! This is crucial. Stress means "stressors": anything which puts your body under an undue stress. Undue stress is relative to your current fitness level, which with M.E./C.F.S, is shot to hell!

Stress: this means exercise, diseases, anxiety, mental exertion, extremes of temperature...normally these things aren't much of a worry and you need exercise & stimulation when healthy, but this illness reacts badly to stressors, causing a sort of "feedback loop": you will feel bad, which makes you more stressed (emotionally) which makes you more sick (physically), which makes you more stressed (emotionally)...Catch-22, and a b*tch of a one at that. Again, it' is not a psyhciatric illness, but just like having the 'Flu, if you run around doing exercise, you will get sick and maybe even die if you go overboard (from suicide due to distress or heart failure as has happened to some CFS victims who over exercised)

It's hard, but you do need exercise to keep your body going...some CFS patients though are so ill they are bed bound. So it's important to do *what is comfortable and not over doing it*, to keep your body working. For me that's walking my dog a few hundred yards once a day. Exercising your MIND is also vital, hence, my computer art keeps me going. Currently I don't have the "brain fog", since getting testosterone therapy and for bit before that actually, it has gone away or changed (which I think is more accurate), instead I have an annoying semi-permanent headache (which feels liek my brain is being sandpapered) and of course, I'm still extremely dumb at times, lol.

I've had to shut down, and concentrate my remaining mental abilities on my art, so I can do something useful in life.


4) Coping with stress. Ah, this is the hard one. Usually what you have to do is remove stressors from your life, until they are at a point you can cope with, relative to how bad your M.E./C.F.S is.That is very much a personal issue to work out.

  I can deal with stress by a way of thinking and converting it into tranquility...this is very hard to explain, Basically I relax as best I can and make hand movements: drawing in up high, pushing out softly down low..this reinforces the idea of converting stress to tranquility. Yeah, I know it sounds nuts, but it works. Or , I imagine myself sitting by a river at sunset, I used to love that and it calms me down. Since getting this illness I cannot relax properly, and I used to be enjoy meditating, the only thing that comes close is a warm bath (which I no longer have, sigh!), which I'd recommend at a temperature you find comfortable, just relax in it: really does help, as many ME/CFS patients have noted.
  A good psychologist, introspection, philosophy, faith, one or several of these may help. Although loved ones can help, you have to come to terms with M.E./C.F.S and stress in your head.

I find music helps a lot, so always have music on, on MP3 player or whatever. Nice relaxing, or upbeat music that gives you "oomph"!.
*is listening to Sky playing "Westworld" at the moment as I type! Boo-yah!! ;)


5) Good pain relief. This varies from person to person, but I find standard r Tylex and Gabapentin works. The Tylex works on the general minor aches and pains, and the Gabapentin cuts down on the hideous distress, neuralgia and headaches. See, Medical Science can be a Good Thing! (tm) hehe.
Note: Tylex seems ot work a lot better than the generic co-codamol.

A newer anti-neuralgia drug: Pregabalin, has been introduced lately, and has had good findings by some.


6) Positive Things. It's not enough to merely endure life. That is not living, that is being mummified: a state of living-death. Try to find things which are uplifting, they really raise the spirits and help keep this rat-bag illness at manageable levels. For me: love, friendship, my art, walking my dog (who's so cute and loveable it's ridiculous!), learning new things and the like.
I really enjoy and take an effort to enjoy things, don't just accept them, really take time to appreciate them. Mental stimulation and exercise tires you out with M.E./C.F.S., something ordinary folk can't easily understand, but it's important to keep your mind active, it literally is like a muscle and loses function as you vegetate.

  Computers are an ideal tool for folk with M.E./C.F.S: almost no physical effort is required, and give many possibilities. I've given in playing most computer games, they are too stressful for me in my current state, but they are very good ways to keep the mind active, management or strategy games may be good for people...digital art...chatting on forums. These and other things can give outlets, communication and goals.


7) I take several vitamin/herbal supplements. Please do not go overboard on such things, as some can be poisonous and ruin your health if abused! (like Selenium, which is a really vicious poison, hence the doses in health products are extremely tiny)
   I use: fish oil, selenium, these are all good for the brain supposedly, and selenium is an anti-dote for mercury poisoning. Considering how much mercury I've got in my mouth thanks to amalgam dental fillings, and living next to one of the most polluted sites in Europe, I think the selenium is a good idea on general grounds, fish oil also helps in that aspect. They do seem to help me.

Edit: ginko seems to have been giving me a worse headache so dropped that after short trial, also ginseng made me MUCH sicker!

8) Sleep, sleep makes a big impact on M.E./C.F.S! In fact, it's one of the thngs M.E./C.F.S particularly affects. I find only having 6 to 7 hours sleep at night, never more than that, helps reduce the awful fatigue on waking and reduces the severity of my illness in general. It's hard to achieve this because this damned illness makes sleep so bad and desperately desired anyway. I think this strategy helps because it makes me have less "dream" sleep, M.E./C.F.S seems to cause a lot of lucid dreaming for me, and that causes stress.. you have my dreams and you'd see why! ;)
FYI, it usually takes me an hour or more, on waking, to be able ot get out of bed. I feel worse, on waking, like a damned sweaty, washed-out dishrag. So it takes me a while to get over that.

9) Avoid starchy foods at breakfast. This is a general health tip and thus also helps me. Having protein for breakfast has an effect on the metabolism, so having a boiled egg, or a meat sandwich helps kick the body into a better routine for the day. Just be cautious, if you have bad cholesterol etc, ask your doctor's advice.

10) Avoid temperature extremes, humidity or glare. These all make me worse, especially hot humid days, those make life almost unbearable. So if possible, air-conditioning, or a fan will help.

11) Avoid allergenic stuff. Lot of folk with M.E./C.F.S have problems with allergies, even going to the extremes of suffering Multiple Chemical Sensitivity (a sort of "allergy from hell") as a peculiar result of M.E./C.F.S, . Each person is different, luckily I'm not allergic to anything (*touch wood*, except poverty and sickness, lol!), but I also stick to using natural fibres and avoiding a lot of chemcials in cleansing products etc.

12) Your memory will suck. That aspect of M.E./C.F.S annoys me: your memory is often impaired. Carry a pen and a small notepad, use a lot of post-it-notes, NEVER leave the kitchen when cooking, even if someone comes to the door, you WILL forget dinner's cooking!. It's grossly offensive to me, and many others with this illness, to find we are forgetful as geriatrics, sigh. Oh well, don't get stressed about it!

13) DON'T PANIC!! No matter what happens, stay calm. Don't get hyper either.

14) Accept your disabled. Despite all the politically correct, stupid attitudes abroad today, you are "disabled". If you lost a leg, you'd be "Impaired" for somethings and "disabled" only for a few things. M.E./C.F.S really, really screws you up physically and mentally. It varies in severity, some folk can still do light work, but most people are barely able to cope with life, and some poor sods are bed ridden or even paralyzed.
   I "fight" illnesses when I get sick, but with M.E./C.F.S, that just stresses you, which makes you sicker...so fight calmly. It's humiliating when you've been a big, tough man to have to admit you need help...pride in this case, is an enemy, it just makes you sicker. Sucks, oh I know, but...that's life, unfortunately.

15) Avoid folk with 'Flu etc, tell them to get to hell if they've got it, brcause if you get sick, your M.E./C.F.S will flare up worse.
16) Get a good doctor, if they are a bigotted jerk who doesn't "believe" in M.E./C.F.S, ditch him or her like the menace they are to your health. A good doctor is a major asset, but, just remember: he still may not be able to do much for you. There is no cure for M.E./C.F.S, unless you're lucky enough to have one of the nasty bugs that either act like it, or are opportunistic infections.
Pain relief, diagnosis to detect or exclude other problems, human sympathy, refferal to a good psychologist to help cope with the trauma M.E./C.F.S causes...that and some other things a good doctor can do for you. Bad ones will bloody kill you, but that's a general point on doctors, lol. Fortunately, most doctors are good and concerned people, God bless 'em! :)

17) For past year I have been on testosterone replacement therapy, whether it's the ME/CFS or something else, my output from pituitary of hormone that triggers testosterone production was almost nil...less testosterone than a 90 year old man according to the specialist. No wonder I was bad, jeesh. Considering I used to weight train before I got this bloody illness and was most definately NOT short of testosterone! :p

It has definately helped, I don't get the "sucking" fatigue so much, I know of no other way to describe it, just feels like you're having centre of chest sucked out and down to your toes: low blood pressure perhaps? feels like only time I ever fainted, similar sensation)
When I get os bad with this, I start to collapse, maybe it's like asthma, bronchial spasms (I get a sensation like breathing in super cold air or petrol fumes), clammy skin, lowering of blood pressure (fainting)?.
Anyway, the testosterone shots made life much more physically bearable, but not stopped whatever the hell ME/CFS is.

I hope this helps you :) I may add more another day.
This page started 22/06/2006.

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All original art, writing on this site, copyright of Steven James, "Silverblade the Enchanter" ©2012