MCS and CFS: May is International Chronic Fatigue Syndrome Awareness Month

MCS and CFS: May is International Chronic Fatigue Syndrome Awareness Month

Your Perfume is my Poison

Your Perfume is my Poison !

I am dying to tell you how your perfume is literally killing me.

Please don't be offended but... not everyone thinks perfume smells good. Fragrances make many people who suffer with Asthma, Allergies, Environmental Sensitivities, Cancer and Migraines much sicker.

We share the air, please consider the health of others before you wear fragranced products in public.

Thank you.

Letting Go -- A Wonderful Inspiration Story

Letting Go --- A Wonderful Inspiration Story

LETTING GO

It is good to be a seeker, but sooner or later you have to be a finder. It is only then that you will be able to give the gift of yourself to someone in the world who is willing to accept it. If you are trying to change or accept anything about yourself or your life, the best place to start is to learn the art of letting go. You will need this skill every day of your life, so learn and practice; practice and learn.

Learning how to let go is the beginning of knowledge. Wisdom is found in the actual act of letting go. If you argue with that statement, think back to all the times you tried to let go and failed. Each time you failed, you learned something. When you finally made it, you were wiser, weren't you? You could know everything there is to know about letting go, but until you do something until you act on knowledge it is useless. Knowledge is learning how to let go, wisdom comes after you have done it.


This is a little story about letting go and gaining strength. I have personally referred back to this story many times over the years and it has carried me through what could have been more painful and difficult situations and relationships in my life.

Human nature can be a funny thing sometimes. You and I are so different, yet so much alike. I think sometimes you wonder if I really understand the things that you feel or are going through. YES, I've been there, usually out of fear, need or greed, nonetheless... I've been there. I have done exactly what you are doing. Like you, I usually had to be pushed out or have it become so unbearably painful that I have no other choice, then I would let go.

I am often reminded of how a Gulf Coast Blue Crab grows. When it outgrows its present shell, it has to shed this old shell and grow a new one. IT HAS TO LET GO COMPLETELY, hold on to absolutely nothing all the way down to its fingers and claws. It has to let go of the struggle itself.

But can you imagine having a choice in this situation? I am afraid I would want to hang on to the old comfortable shell until the end...wouldn't you? Just think of yourself, knowing that to live, you have to let go of your comfort. familiarity and protection. But also knowing that to stay in the old shell would limit you so to the point that eventually you would suffocate and die.

Growth for the crab is very difficult. It has to risk shedding its old familiar shell, become a soft crab again and be vulnerable. To survive, it has to go to the bottom, go into the mud and be associated with other crabs also on the bottom. The surviving crab must learn to have faith that its shell will become firmer and larger each hour. It develops a faith in its pain while it is growing and maturing and learns to believe that it will be prepared for what is currently unknown to it.

For me, letting go is an ongoing process. I don't know why it is so difficult to let go, until I begin to hold on to something or someone again. I not only hold on to people, places or things, I hold on to beliefs; beliefs that worked for years but are no longer useful to me.

The crab story helps me understand that for the rest of my life I will be growing and like it or not, there with be changes taking place and with these changes there might be pain. What surprises me is that I can sometimes let go and experience the feelings with excited about what is in the future for me.


Sometimes I can't wait to shed my shell, learn what I need to learn and get the old shell behind me. I hope that you can relate to some of this. When someone is trying to shed their shell, they are also trying to grow. If you don't let go, you may one day find yourself holding on to an empty, dying old shell. When we cling on to someone else, we slow him or her down and ourselves as well. To let go of another person, you must have no suggestions for them whatsoever; no arguments; no "if you would only"; no "someday you will"; no "nothing!" You have no advice for him/her, nothing more to teach or learn from this person. Remember, any struggle, any "you ought to’s" any "you shoulds" any "anything" will keep you both where you are right now... struggling to get out of a shell that no longer fits. You have no solutions for anyone else at this moment in time. This is about YOU and YOUR growth.

We simply must shed our own shells and grow. Remember, down to the ends of your fingers and claws, you must release any thought of holding on. Just think of letting go, growing stronger moving on with your life and experiencing what the world has waiting for you. You may let go just so much, feel the fear of the unknown and want to cling on more than ever before. Not so, this is your time to grow and be strong. Remember, you have no suggestions on when and how someone else should shed their shells and grow. This is about YOU and YOUR growth.

When you finally let go or get kicked off enough times, you will go through the pain and begin growing your bright, clean, beautiful, new larger shell. This time you will be free. Free enough to swim wherever you choose, with knowledge enough to guide you there. You will have a shell large enough to feel confident in yourself and to grow within. You will be so beautiful that others will ask you how you got that way. They will want to learn from you how to let go of their old shells that have become too small to live in so that they too can grow and experience a wonderful life.

An important thing to remember and think about, just to keep you humble. One day you will outgrow this beautiful new shell. However, each time you have outgrown a shell, you will go through some pain, but it will never be as difficult or as painful as the first time.... I PROMISE.

May is International Chronic Fatigue Syndrome Awareness Month

The Thief of Many Lives

The Reality of living with Chronic Fatigue Syndrome


Until you read "The Thief of Many Lives" you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.

What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day ... we must be feeling "better" ... "better" than what? Death? Unfortunately, CFS victims generally do not feel better than death ... warmed over or otherwise!

Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the "good" days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA !

CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.
May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.
BE AWARE OR BEWARE ... As you could be writing this letter from your bed next May 12th.

`````````````````````````````````````````````````

The Thief of Many Lives
© Kathleen Houghton --- Alaska CFS-MCS Association

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? 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 unraveling 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, author of The Thief of Many Lives was a professional healthcare worker dedicating many years to Pediatric Special Care nursing before CFS put her life on hold at the age of 36. She continues to be ill and is mostly housebound with Multiple Chemical Sensitivity (MCS) as well as CFS. When able, she promotes CFS and MCS Awareness through accurate community information and education.

Real Estate: Why scents may not make cents

Why scents may not make cents when trying to sell your home.

For many home sellers and real estate agents who believe the TV commercials that claim chemical sprays “sanitize” the air, plug-ins “freshen” the air and Fragrance emitting devices actually clean the air, well…this may not be music to your ears.

The savvy, health conscious home buyer has added chemical fragrances to their list of what they don’t want to smell when they are looking to buy a home. These chemical fragrances are now listed right next to mold, cigarette smoke odor and animal urine by many home buyers.

Home buyers today are more educated than ever. Even inexperienced first time home buyers understand that chemical fragrances do not clean the air, they contaminate it with toxic chemicals and more often than not these chemical fragrances make people very sick.

Home buyers have kids with asthma and allergies. They, themselves, might suffer from migraines, respiratory illness, cancer or fragrance sensitivity. Home buyers know that clean should not have a smell, not of disinfectant or chemical emitted fragrances .

So, while the location, square footage and price of your home might be perfect for your would be buyer, the smell of your home just might be the deciding factor on why an offer was not written up.

What does your house smell like?

Once plug in style fragrance emitting devices are used in a home, the oil / fragrance permeates the wallboard as well as flooring. Similar goes for the fragranced dryer sheets in the laundry room. These chemical odors then circulate in the air vent heating and cooling system and will never come out, no matter what you do.

With the growing population of people suffering with fragrance sensitivity, Asthma, respiratory conditions, various cancers and allergies, house hunting can often prove to be quite a challenge.

If you are seriously in the market to sell your home, increase your odds of getting top dollar and more offers by discontinuing the use of fragranced products. Open your windows and let the fresh air in. Clean with non-fragranced products. Your house will then be marketable to all potential buyers... even those with health issues.

After all, you do want your home to take a buyers breath away... but not literally

The Thief of Many Lives -- The Reality of living with Chronic Fatigue Syndrome

Until you read "The Thief of Many Lives" you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.

What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day ... we must be feeling "better" ... "better" than what? Death? Unfortunately, CFS victims generally do not feel better than death ... warmed over or otherwise!

Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the "good" days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA !

CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.
May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.
BE AWARE OR BEWARE ... As you could be writing this letter from your bed next May 12th.

`````````````````````````````````````````````````

The Thief of Many Lives
© Kathleen Houghton --- Alaska CFS-MCS Association

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? 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 unraveling 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, author of The Thief of Many Lives was a professional healthcare worker dedicating many years to Pediatric Special Care nursing before CFS put her life on hold at the age of 36. She continues to be ill and is mostly housebound with Multiple Chemical Sensitivity (MCS) as well as CFS. When able, she promotes CFS and MCS Awareness through accurate community information and education.

Visiting MCS

What you need to know before visiting a person who has MCS

I can't wait to get together, it has been so long since we last sat and chatted over a cup of tea. Life sure has changed in many ways since we last visited

with each other, hasn't it?
For me, interacting with other people is one of the hardest and most stressful things for me to deal with these days while having a difficult to control illness. Even well meaning people can cause me to have what may have started out as a "good day" into a life threatening medical nightmare or disaster.

Jeesh... when I think about it, I have to run as fast as I can to stay in place on most days. As if living with such a difficult health situation is not bad enough, it is often equally difficult for me to ask others not to make me ill in my own home by using various chemicals/products that seem completely harmless (to them). This causes an entire other set of issues due to isolation, alienation, resentment and even friends & family avoiding me because being in my company or visiting me is simply not "convenient" for my would be guest.

If you are planning to visit me at my home for a few minutes, hours, or for and extended over night stay, here are some basics, which may help make our visit enjoyable and lessen the chances of my becoming too ill to enjoy our visit as well as lessening your chances of feeling hurt, bad or embarrassed
for contributing to my illness.

After all, breathing is a necessity, chemicals and fragrances on ones body, hair and clothing are not. Hence, my health and ability to breathe in the company of another person is NOT negotiable.

The truth of the matter is I have never really been in the company of another person who made me sick… it was the chemicals they had on their body, hair and clothes that has gotten my health to the compromised point in which it is today.
There are not any products that I am not neurologically reactive to. It is just a matter as to how reactive or sensitive to them I am and how ill a specific product will make me.
So, please leave them all at home.
Those "all natural" fragranced products are not safe around me either. While some products are worse than others, all WILL make me sick to some degree, probably too sick for you to even come into my home or to enjoy your company.
These are just some basics, but better to ask me than to assume.
Personal hygiene Simple rules-of-thumb: If the word perfume or scented (natural or otherwise) is on the label of your product, don't use it before you come to visit me at my home … Yes, even your breath mints, gum and mint toothpaste smells could knock me for a loop as would bug sprays and "body sprays."
Things you probably cannot smell affect me and make me pretty sick; after all, it's the chemicals not the odors that make me sick, so, just ask if you're in doubt.

Cosmetics have exemptions from labeling laws, they are literally allowed to state they are fragrance free, when they in fact do have fragrances in them referred and often labeled as "masking fragrance" which is used to cover up the smell of the product itself. Obviously, chemicals are chemicals and fragrance is fragrance, if it's in there it will make me very ill.

Shampoo:

All brands you can buy in a supermarket have fragrances in it, even baby shampoo. Please do not "drop in" after you have just come from the salon or you have just shampooed or colored your hair. This will make me sick.
If you will be staying over night at our house, I will supply the guest bathroom with "safe" products (ones that do not make me ill) for you to use while visiting, including: toothpaste, shampoo, conditioner, lotion, soap etc.
Please DO NOT bring any of your own personal products
into my house.

Soap is like shampoo.

The worse offenders to me are Dial Soap and ALL other "deodorant/scented" soaps. Safer alternatives are easily available like Neutrogena Fragrance Free soap or Basis soap. Again, ask me and I will help you out here.
Keep in mind that the soap you may wash your hands with in a public rest room or in an airplane before you get to my house will make me sick because chances are good that this soap will contain a perfume /fragrance.
Currently the ONLY soap that is safe around me is Neutrogena Fragrance Free Facial soap which we also use as a GREAT shampoo bar and Kiss My Face Fragrance Free Pure Olive Oil bar.

Deodorant:

Most all deodorants have fragrances or "masking fragrances" and other harmful chemicals in them. A good alternative is the crystal sticks, or any of the chemical free varieties. Try Arrid UNSCENTED or ask me which deodorant would be ok for you to use while you are visiting me at my home.

Hand cream & Lotions:

There does not seem to be any safe hand creams for people chemically sensitive. Best to leave yours at home. I have some nice "safe" lotion bars that are great even for your face. Perfumes, fragrances, colognes, lotions, after shave, hair care products, nail polish and/or remover etc…
I've Just got to say NO!

Lotions, hair gel, hair spray... Amazing how much stuff people pour on their body, hair and laundry every day, isn't it? Please do without these products around me, in our home or when visiting.

Clothing… What to avoid: DO NOT WEAR --- Any/all clothes washed in any scented (natural or synthetic) detergents or bleach, this will make me sick. So will clothing that has “Fabreeze” OR “Bounce” on them.

DO NOT HAVE ON --- Freshly polished nails (same day)… the same goes for "just" colored or permed hair.
Hands which were washed with a bar or liquid soap, which has fragrance or germicide in it will make me really sick.
New clothes – new fabrics are treated with formaldehyde and formaldehyde makes me terribly sick. DO NOT WEAR --- Dry-cleaned clothes DO NOT WEAR --- Moth balled clothes DO NOT WEAR --- ANY Clothes which have EVER been previously washed or dried with fabric softener / dryer sheets of any kind…
This is the worse for me and will make me very sick.

Bears repeating:

DO NOT WEAR --- ANY Clothes which have EVER been previously washed or dried with fabric softener / dryer sheets of any kind…
This is the worse for me and will make me very sick.

Do not pack (if you will be staying overnight) or wear clothes that have been in the closet next to other clothes, which have "lingering" perfume/cologne/aftershave smells, fabric softener smells, deodorant smells or detergent smells.

Overnight guests Needless to say, I do not use any fragranced detergent, softeners or laundry/cleaning products. I wash clothes in borax and/ baking soda; it works well even for dirty work clothes. Chances are good if you are staying over for more than a couple of days, you will need to do a load of laundry. Any clothing previously washed and/or dried using products that contain fragrances cannot go into my machines or come into the house for that matter. Even if they were washed and dried last month, fabric softeners and dryer sheets leave a permanent lasting waxy film that sticks on your clothing and machine

FOREVER -- this will make me very ill.

If you have any questions about any of this… please ask

BEFORE you come to visit.

Save yourself from an uncomfortable and perhaps embarrasing situation.
When you keep "forgetting," I get one of two messages:
Either you don't believe I'm really sick or you don't care.
I never get the message you just forgot.

PS… MCS is NOT an allergy or an "allergic" reaction to "smells" or “perfume-fobia.” It is a serious and very difficult to manage highly reactive neurological disorder triggered by chemicals (fragrances are chemicals) . I am obviously much more neurologically/chemically sensitive now than I probably was the last time we saw each other, but this doesn't mean we can't enjoy each others company and have some fun, it just means I need to be more careful to avoid triggering a negative reaction.


On a more personal note about MCS:
If I were to tell someone that I had Cancer or Multiple Sclerosis, that person I'm talking to can accept this in a detached and somewhat impersonal way. The issue usually does not personally challenge the other person. Now if I tell this person that perfumes, every day household chemicals, scented soaps and fabric softeners make me horribly sick to the point of disabling, since he/she most likely use one or more of these products regularly, the issue is immediately personal.

And if all of this seems too overwhelming to remember, then try this ...
Pretend it's happened to you and you are having to send this letter to your friends and family members..