# cfs awareness day



## trbell (Nov 1, 2000)

MAY12 - AWARENESS MESSAGEFROM ALASKA CFS-MCS ASSOCIATION 2002--------------------------------------------------------------Until you read "The Thief of Many Lives" you too may havequestioned the validity of Chronic Fatigue Syndrome as a realillness. It is VERY real, especially for us the sufferers and ourcaregivers. The credibility and validity of this disease has longbeen a most difficult message to convey to our Government,Physicians, Healthcare Professionals, friends, families andgeneral public. What makes this even more challenging than howwe might physically appear is the inappropriate name given tosuch a serious and debilitating disease. Consequently, one ofthe worse things someone can say to a person with CFS is howwell we look on a particular day... we must be feeling "better" ..."better" than what? Death? Unfortunately, CFS victims generallydo not feel better than death... warmed over or otherwise!Lengths of time go by, months, seasons, and then years when allof our reserved energy is used simply to eat and breathe andthose are the "good" days. Unfortunately, not many see this, asmost people with CFS are left to suffer behind closed doors.Unexplainably, our cries for awareness, and validity continue tofall upon deaf ears. WAKE UP AMERICA (or other country)!!!CFS is at epidemic proportions destroying lives and affectingmillions of people worldwide.May 12th is International CFS Awareness Day. Please makeyour voice be heard. Inform others about the tragic impact thisillness is having on you, your loved one and our nation (yourcountry). BE AWARE OR BEWARE& As you could be writingthis letter from your bed next May 12th.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Thief of Many Lives--------------------------------ï¿½ Kathleen Houghton --- Alaska CFS-MCS Association 2002.I am constantly on the prowl in search of new victims. I do notdiscriminate---health care workers, teachers, students, airlinepersonnel, teens, moms, dads, and innocent children are myprey. If you are dynamic and have a lust for life, I will seek youout, and I will find you.Just when you are at the peak of your endeavors, climbing thatcareer ladder or building your family and home, I will find you.There is nothing that you have in your life today that I am notcapable of destroying tomorrow, your career, your education,your goals, your dreams, your family, and your life. I will have itall. I will strip you of your ability to function at any level aboveminimal, 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 Iwill. It will take a marathon effort for you just to get out of bed. Ata cellular level your immune system will be in a constant warbattling itself and unnamed viruses, which will painfully bereplicating in your brain. I promise you, I will bring you despairalong with pain, isolation and losses far beyond what you canever imagine. Your mind will be in a constant "fogged" state,your expression will be unable to express, and your eyes willhave a noticeable "glazed over/drugged out" look. You will find itmost difficult to pay attention, concentrate, or even process thesimplest of thoughts. Making change from a dollar may well bebeyond your ability now. Your mouth may feel like it is full ofmarbles when you try to speak, as your tongue twists and nothingyou try to say comes out right. Who would believe your level ofeducation when you can't even string enough words together tomake a complete sentence ... or one that makes any sense forthat matter. I promise, I will bring you at any unsuspecting time,severe abdominal pain, nausea, vomiting and diarrhea alongwith a host of gastro-intestinal disorders. I will make you weakand lifeless as one could be without being confirmed dead. Youwill be housebound or in bed for several years if not the rest ofyour life. As part of incapacitating you, I will make your heart raceand your head pound; your throat will constantly be sore andyour lymph glands will swell. That will all seem trivial after Iinflame and spasm muscles throughout your body. Crushing agrape between your fingers may take too much energy or be toopainful now.On those nights that I allow you to sleep, you will awakendrenched with sweat or throbbing with pain. Perhaps I mighteven throw in a little seizure activity. On those nights that I do notallow sleep to occur; I will torture you with thoughts of death....Not suicide, but death. Simply because you have not come torealize that this is your new life, and that you are not living. Youwill need to re-create your being every day, as every day I willbring you unpredicted symptoms and suffering.I have also done a few things that you may not be aware of yet. Iplaced some lesions on your brain (have you noticed how youhave difficulty with balance and memory yet?) and I havepermanently altered your immune system. I have shorted out yournervous system so that you have intermittent numbness andtingling, which might resemble an electrical current zappingyou from time to time. This is called neuropathy. Nope, it's notcurable either!Now I have you. I have taken over your body and mind. I havestolen your life but left you alive, not very functional, but by clinicaldefinition you are still alive.Your family will not be able to give you all the constant care thatyou need on a daily basis. As for your friends, well, they're still onthat ladder climbing up. Rest assured, I am looking for them too.By now, chances are good that most of your family and friendshave abandoned you, so you must have learned the definition ofisolation. This newfound isolation will save you from having toexplain how sick you really are to others, they won't understandanyway. Isolation will save you all that energy.Your health insurance has already been or will shortly bediscontinued as you lost your job from not being able to "keepup." Perhaps you got caught dozing off or called in sick one toomany times. Now that you are no longer employable or insurable,when you seek medical care, any medical professional thatfigures me out will diagnose you and say that what you have ispresently not curable.Now it is time for you to seek out medical care, nation if notworldwide. However, most so called medical professionals willnot even have the ability to recognize me when they see me, asthey have not learned about me in medical school. So, chancesare good that you will be misdiagnosed. You will give moreblood samples and have more examinations than you everimagined existed. Then you can take the results to dozens ofdoctors in search of a diagnosis. One that is valid as well associally and medically acceptable. One that does not label youas depressed or say that "it is all in your head!!!" Most doctorswill suggest a vacation, weight loss diet, new or increased lovelife, help with the children, or change of scenery as the "cure,"mainly because you may look like the picture of health. This ismy mask of deception.You will pray for a positive word from current research.Research, which you will soon learn, is quite limited due to lackof funding and government support. You will learn newvocabulary which contains words like: T-Cells, Cytokines,Nuclear Antigens, Natural Killer Cells, Immunoglobulins,Cytomegalovirus, Seratonin, Cerebral lesions, and ImmuneDysfunction are among a few. However the most importantwords that you will need to know and fight for are Social SecurityDisability and Medicare.At one point I may give you a false sense of recovery orremission. Let me assure you, I will be back, as you are myprisoner and that makes me your keeper. I have placed the livesof millions of people nationwide in limbo, I continue to do thesame world wide. I would consider this an epidemic, wouldn'tyou?Eventually I will bring the government, health care workers, andsociety to its knees in search of unraveling my complexities,which are crippling humanity. I leave it up to you, my victims, andyour caretakers, to educate the public and let them know that Iam very real and that you are very sick. Unfortunately, I havebeen given a totally ridiculous name, which will make your jobeven more difficult. Until that name is changed, I am. CHRONICFATIGUE AND IMMUNE DYSFUNCTION SYNDROME````````About the author: Kathleen Houghton is a 47 year old womanwho has battled CFS, FM and MCS for more than a dozenyears. Pre-illness, Kathleen worked as a pediatric special carenurse caring for infants and children on life support. Kathleen,now mostly homebound, works in conjunction with other national& international health organizations, researchers and medicalprofessionals providing information, education and awarenessabout Chronic Fatigue Syndrome, Environmental Illness &Multiple Chemical Sensitivity.Kathleen Houghtoncfs-mcs###gci.net````````````````````````````````````````````Lydia NeilsonMAY12 - CONTRIBUTIONS WANTED FOR NEW BOOK FROMARTISTS, PHOTOGRAPHERS & WRITERS WITH ME/CFS---------------------------------------------------------------------------------*Calling all artists, photographers & writers with ME/CFS*Contributions required for a brand new book, describing whatME/CFS actually 'feels' like, through the words and pictures ofsufferers. All prose, poetry, photos & artwork considered. Do youhave a story to tell, an image to show the world? Internationalpublication planned. For guidelines and submission form see:www.geocities.com/mecfsbook or send self-addressedenvelope (+ international reply coupons) to: 'ME/CFSContributions', 18 Bishops Way, Buckden, Huntingdon, Cambs,PE19 5TZ, United Kingdom.~~~~~~~~~~~~~~ --------------------------------------------- Too much mail? Try a digest version. See http://www.co-cure.org/digest.htm Send posts to mailto:CO-CURE###listserv.nodak.edu Join or leave the list at http://www.co-cure.org/sub.htm ---------------------------------------------tom


----------



## M&M (Jan 20, 2002)

Thanks for posting that Tom. It was really good!


----------



## moldie (Sep 25, 1999)

Hmmm, why do I feel like crying now? That was soooo depressing! Glaringly true, but depressing.They had info about May 12 being CFS and Myofacial Syndrome day in Annie's column yesterday. I felt Fibromyalgia was sadly left out. Never mentioned it. Some people with Fibro suffer worse than people with CFS. We are supposedly to have been in the group according to this and other years. Perhaps the person writing in did not have Fibro, so she couldn't relate? Perhaps she thought Miofacial pain and Fibro were one in the same? Now I will have to go back and read what someone posted on this and maybe I'll have a clue.


----------



## Susan Purry (Nov 6, 2001)

> quote:Some people with Fibro suffer worse than people with CFS.


and vice versa! I'm very glad with this awareness day not to see Fibro and ME/CFS lumped together for once. It's helpful often to have the two combined for patient support and self-help as with this forum, but for awareness, diagnosis, treatment and management I think it's useful to have them tackled separately. They are after all different conditions even though they have some symptoms and some consequences in common.


----------



## moldie (Sep 25, 1999)

Sorry Susan. Didn't mean to imply that fibro people suffer worse symptoms. It depends upon the severity of both. I'm having an especially bad day today. Everything hurts and I am so fatigued I can't think straight. It seems all the things on the list I have are attacking me at once. My intestines have been acting up big time. Just when I thought I was beginning to gain a little control - POW! Right back to square one! I apologize for my whining.


----------



## M&M (Jan 20, 2002)

Well, one thing we do have in common between Fibro and CFS - We are all sicker than most "normal" people, and we all have it hit us especially bad on certain days. I'm sicker than a lot of people I know who have the same diagnosis, but I'm sure somewhere someone is sicker than me with the same diagnosis. That poor person!


----------



## Susan Purry (Nov 6, 2001)

moldie, you don't have to apologise for venting on this forum! Being knocked back down by everything at once after a good spell is so frustrating isn't it. I hope you feel better soon.


----------



## moldie (Sep 25, 1999)

Thanks. You guys (gals) have a way of putting things in perspective and lifting me up again. That's why I like to come back here. I'm feeling better today.







M.


----------



## Guest (May 21, 2003)

Thanx, Tom... I remind myself of the validity and reality of Chronic Fatigue Syndrome and Fibromyalgia every time I have to sit down on the mall floor while shopping, lie down on the dance floor during technique workout, fall asleep on my bed after an afternoon of running errands or a long hard day at work........ or when I have to cry just to help myself feel better when the pain, fatigue and depression are closing in.  Evie


----------

