Most people with chronic illnesses, such as chronic fatigue syndrome (CFS),
fibromyalgia (FM), and multiple chemical sensitivities (MCS), have been
offered well meaning advice, such as joining a club, getting some exercise,
and getting out more. These infuriating, but well meaning, suggestions often
leave the chronically ill individual feeling misunderstood. After all, would
it be appropriate to tell an paraplegic to have fun by going dancing? Of
course not!
Well meaning friends often believe that chronic illness is psychological and
victims just need to get out and have fun. Or, they may believe that the
victim would not be tired if they got in shape. Or worse, they think the
illness is affecting the chronically ill person at a psychological level and
believe that to be the reason why the ill person does want to go out more
often. In reality, those with chronic illness are quite adept at pacing
themselves to avoid exhaustion. What friends fail to realize is that
exertion is exertion, regardless of work or play. Now science has stepped in
to provide evidence of this.
Researchers in Japan noted that patients with chronic fatigue syndrome
(CFS) report substantial symptom worsening after exercise and took an
interest in the specific time course of the worsening. They investigated the
influence of exercise on the subjective symptoms and cognitive function of 9
female CFS patients and compared them with 9 healthy women. An exercise test
was conducted and monitoring of vital signs, cognitive function, and
psychological status was performed from one week prior to exercise until two
weeks after exercise.
Physical symptoms in the CFS patients did get worse on the fifth day.
However cognitive and psychological status remained constant. There was no
cognitive or psychological benefit to the exercise, yet patients became more
fatigued and suffered physical decline.
Regardless of pleasure or pain, exertion is exertion. Pleasurable exertion
holds the same fatiguing capability for the chronically ill as unpleasurable
exertion. And there are no psychological benefits to boot. The next time we
recommend to a CFS patient to get out more, have fun, and exercise, it might
be best to think twice and opt for a quite home movie that won't make the
person sicker and more discouraged instead.
This post is copyrighted (c) 2007 Lourdes Salvador
http://www.americanchronicle.com/articles/viewArticle.asp?articleID=36333
"Reprinted with Permission"
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2 comments:
In an effort to enlighten others, I wrote...
The Thief of Many Lives
I am constantly on the prowl in search of new victims. I do not
discriminate --- health care workers, teachers, students, airline personnel, teens, moms, dads, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.
Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."
I have the ability to create an invalid out of you overnight, and I will.
It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses, which will painfully be replicating in your brain. I promise you, I will bring you despair along with pain, isolation and losses far beyond what you can ever imagine.
Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense for that matter.
I promise, I will bring you at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be housebound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape between your fingers may take too much energy or be too painful now.
On those nights that I allow you to sleep, you will awaken drenched with sweat or throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur; I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living. You will need to re-create your being every day, as every day I will bring you unpredicted symptoms and suffering.
I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and I have permanently altered your immune system. I have shorted out your nervous system so that you have intermittent numbness and tingling, which might resemble an electrical current zapping you from time to time. This is called neuropathy. Nope, it's not curable either!
Now I have you. I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.
Your family will not be able to give you all the constant care that you
need on a daily basis. As for your friends, well, they're still on that ladder climbing up. Rest assured, I am looking for them too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others, they won't understand anyway. Isolation will save you all that energy.
Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable, when you seek medical care, any medical professional that figures me out will diagnose you and say that what you have is presently not curable.
Now it is time for you to seek out medical care, nation if not worldwide. However, most so called medical professionals will not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So, chances are good that you will be misdiagnosed. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid as well as socially and medically acceptable. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you may look like the picture of health. This is my mask of deception.
You will pray for a positive word from current research. Research, which you will soon learn, is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for are Social Security Disability and Medicare.
At one point I may give you a false sense of recovery or remission. Let me assure you, I will be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo, I continue to do the same world wide. I would consider this an epidemic, wouldn't you?
Eventually I will bring the government, health care workers, and society to its knees in search of unravelling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick. Unfortunately, I have been given a totally ridiculous name, which will make your job even more difficult. Until that name is changed, I am. CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
© Kathleen Houghton, Director, Alaska CFS-MCS Association
In reply to the Thief of Many lives, What you call yourself is not important, I don't really care how many names you call yourself.
There is something in my so called life that you are not capable of destroying and that is HOPE!!
Yes, you have entered our lives and stripped my innocent child of his normal ability to function at any level above minimal.
But I am here I am my child's VOICE and you cannot take that from me either.
I will fight you with all the energy I have, I will tell as many people as possible about you.
YOU WILL NOT ESCAPE ME WATCH OUT!!!
I will give my child all the constant care that you say I won't.
This is because I LOVE and CHERISH every minute I have with him.
This is because I am a MOTHER!!
Yes, when you steal his nights from my child and do not let him sleep, and cause him so much pain. I am there by his side.
As for his friends who are still climbing the ladder of normality, YOU WILL NOT CATCH THEM, I WON'T LET YOU.
SO you have a fight on your hands, not an easy one I agree.
I am going to WIN not you!!
I will fight you, the government and anyone else who gets in my way along this very difficult journey,I will not let you let us live a life of just existing.
We are going to fight back!!
Just a wee comment to you the Thief
Yes you have taken a lot from my son and our family and all the things you have mentioned sleep reversal,Isolation,loneliness,
despair,concentration and memory difficulties, most of all Pain amongst many many more symptoms.
So I call for anybody reading this PLEASE PLEASE reply DO_NOT let this Thief STEAL OUR LIVES, EVERYBODY HAS A RIGHT TO LIVE LIFE TO THE FULL.
I will find you and I am pleading with people to support me and help me raise funds and awareness of this terrible debilitating illness
I call ME.
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