How It Feels to Have MCS (Daisies' view)

Hello, Friends,

My two posts, "Daisies" and "Daisies - Part II" were detailed and admittedly grueling to write, but I wrote both with the purpose of telling you a significant part of my own chemically afflicted background -- and to make it perfectly clear why I recognize homelessness as being the looming threat that it is to all chemically sensitive people.

Likewise, I've detailed my recent experiences with iodine as they relate to my present health status -- again with the hopes of plugging into something that might possibly be relevant to other chemically sensitive individuals.

Having said that, I would like to explore the topic of how it feels to be a toxically injured/chemically sensitive person --- and how it feels to write or talk about chemical sensitivity.  As each chemically sensitive person is unique and varies from the next person in background and emotional makeup, I wish to stress that, of course, I realize I can speak here only for myself.

My predominant emotional reaction to my own chemical sensitivity is a disgusted despondency, a self-conscious embarrassment.  Not embarrassment about the reality or nature of the affliction, itself, but embarrassment at being forced to speak about myself in this way to another person, merely in order to mitigate or eliminate something that makes me feel, for lack of a better word, "sick."  My own social code, otherwise, would propel me away, far away, from having to direct any attention to myself in this manner -- often upon just being introduced to someone, or upon seeing someone again after a long time . . .  And the topic is so unattractive, so seemingly ungracious.  It's a blot upon social loveliness.

In short, chemical sensitivity causes me to appear to misrepresent myself, and my idea of social graces, right off the bat.

I also feel extremely mortified every time I write a post, here, relating to myself or my physical condition.  I try to put that sense of mortification in the back of my mind, but I tell you honestly, I find the concept of detailing these things odious, ugly.  I forge my way through it with the hopes of ending it as quickly as possible and getting onto a more desirable topic.

But I know how very much the smallest details of other people's histories can, at times, beam an unexpected bright light into a very dark and bewildering experience.  If other people had not detailed their own agonizing experiences to what I'd generally consider a potentially "mortifying" extent, then I might never have realized what, exactly, afflicted me.  The same goes for mothers of sensory-challenged children, as another example, who might initially have no idea of what ails their child until they read the painstaking details of another child's story, written by his parent(s).  I also consider, as one more example, the mind-bending awakening of parents who realize, suddenly, through the smallest details of stories told by another parent, that their child might actually be on drugs.

Details matter.

The sad fact is that, while diligently compiling and transmitting details, the chemically sensitive person runs an extremely high risk of being misinterpreted and having his otherwise intact credibility being swept away by others' misunderstanding.

In colloquial terms, this knowledge leaves me with a weary, despondent feeling of, "Yes [deep sigh], I'm one of those persons."  Meaning, I'm one of those persons who are often mistakenly thought to be a little bit "off" in the head, a little paranoid, a little bit . . . let's say it:  crazy.  Oh, others may be nice about it, because they don't think you're really that far off the beam -- but, well, just a little bit off to the side somewhere.  But you're still lovable, although you really must be taken with a grain of salt . . .

So there is often this subtle, polite, guarded mistrust on the part of others.  A chemically sensitive person who has had to squeeze through this invisible barbed wire knows well the sense of this. 

There are, in this world, persons who are truly hysterical hypochondriacs who see doomsday at every turn.  I cannot tell you who they are and who they aren't.  But we humans know that these "afflictions of the mind" exist.  And simply knowing that hypochondriacs exist is enough to inspire in anyone a fear of being considered one of them.

Consequently, I often experience a sinking, "drop in the stomach" feeling at the thought of my own writing on this blog.  Every time I write a post, I experience an internal flinch, a quick flash of "subclinical" terror in which I ask myself, "Will I survive this post?"  

Translated:  "Will others now believe I've lost all my credibility?  Will they tune me out?"

Many will.  

But some won't.  And those "some" make this blog well worth the writing.

Cheers!

~ Daisies

A Time to Weep

After watching the video of Dr. L. Christine Oliver (Harvard/Massachusetts General Hospital) and Alison Johnson, author, speaking frankly about the reality of toxic injury/MCS, I knew what my next subject had to be.

Reading from her book, Amputated Lives - Coping with Chemical Sensitivity, Ms. Johnson draws our attention to the ravages of misunderstanding and disbelief which can lead an MCS sufferer to suicide or to repeat attempts at suicide.  She points out that "there are many ways to assist in suicide" -- one way being through disbelief in the reality of MCS.

Disbelief can feel scathing at times.  When we feel strong enough within, we can try to let it roll off our backs. When we feel extremely poisoned, weak, helpless, sad, and lonely, disbelief can feel like a cruel punishment.  We might then rack our brains for ways to explain our ongoing state of toxic injury better "the next time."  Simultaneously, we already know how very low the common tolerance is for such verbosity on our parts.  We're walking a thin line and we know it.  

When we really need the physical assistance of others to accomplish physical labors, we often can't accept the help that is offered.  Due to others' often incomplete picture of chemical sensitivity (what they've already heard from us in the course of things is quite enough, thank you), they're liable to come to us wearing one scented product or another that still puts our bodies over the edge.  If we mention this lingering scent, let it suffice to say that reactions to such a "complaint" can vary widely.  The mere mention of the problem could send the help right back out the door in disgust.

But, more often than that, it will simply inspire further, more intractable disbelief.  And where do we go from there?

To be disbelieved when you're telling the truth, when your nose really is that bionic, when the loss of balance really is that bad, when the drugged, electrically charged feeling intensifies just as you're speaking to the person about the scent in your midst, when you know that you're going to be disabled for the next two or three days for every few minutes longer you speak with this person  . . . or, one step worse, you've had to give up even broaching the subject at all . . . . .

This is a phenomenon so grinding, so cognitively torturous, and so physically sickening, I'd rather not even go there.

But this -- this continual need to prove oneself and beg while "under the gun" for real support, support which often does not materialize while friendship blithely burns out -- this is what drives worn down, desperate souls to the brink.

The toxically injured are often pushed out of the easy come-and-go of social life, only to find, once we are "out there," that very few people -- if any -- actually miss us.  Why is this so?  Because we've been pushed back so long and so steadily by persistent disbelief in our toxic injury, by lack of real concern for our plight, and by others' nonnegotiable choice of fragrances over us, they've finally just assumed that "we left them."

If we lack a loving spouse or a close-to-the-heart best friend, this is a terrifyingly cold, abandoned place to be.

And many are there right now.

Please, friends and new readers, remember them.

~ Carolyn

Stumbling Blocks

Good day!

Now that I've finally got this site up and running, I'm realizing that I'm also relying on it as a personal tool to convey to others (who are interested) how they can help me to be able to be around them.

I'm finding that, if people aren't thoroughly understanding the way in which toxic injury and repeat chemical exposures operate, they will keep thinking they've "got it."  Then, they will continue to be surprised, dismayed, or feeling contradicted when one of their accommodations doesn't work for me, or when a brand new accommodation is necessary.

Two things seem to "throw" people the most:

1)  The body has a variable toxic load each day, and the most minute environmental conditions can tip the scale this way or that in terms of reactivity, speed of reactivity, or strength of reactivity.

2)  The way toxins fill and cling to an environment is not often fully understood or appreciated.

Also, one further thing which becomes yet another stumbling block, on the strictly social level:

It isn't always polite or prudent for someone with toxic injury to mention every single reaction or suspected chemical trigger, even to those who are supportive of him.  Sometimes it is not prudent to do so because the other person already believes, to his own satisfaction (based upon his own level of knowledge of your difficulty), that you haven't reacted to this or that product in the past.  You look at the person, see how hard he's been trying to accommodate you, and you can't quite bring yourself to say, "You know, this product might actually be a problem for me, but I can't explain it yet."  You realize, in advance, how much time and further "testing" you'll have to do to be able to speak with some kind of certainty on the matter.  Furthermore, sometimes the person is pretty firm about how you definitely did not react to this or that. . . . . and you start to feel as though you might frankly appear to be a liar or, worse (?), a hypochondriac who is now taking things just a little "too far."

Getting past this might take time and energy that neither you nor the other person presently has.

Perhaps, for instance, you didn't choose to mention a reaction after being around others because (1) you weren't sure what was going on, at all; because they assured you they were clear of offending substances; (2) you needed to test your idea under different and repeat conditions; (3) the conditions of proximity of exposure differed each time (perhaps in one instance there were things which interfered with the travel of the scent or directed it away); and (4) you were more toxic internally on this day than on that day.  This is far too much to mention routinely even to people who are beginning to learn about this issue.  Talk about information overload!

People often assure us that they are clear of offending substances, but we must quickly realize that this assessment is based only upon their knowledge of potentially offending substances and how those substances linger in the environment.  If this knowledge is still in formation, with large gaps in their knowledge due to infrequency of exposure to this topic, many people will feel misled or disbelieving when you have to tell them that this substance, too, is a problem for you.  Perhaps they believed that this particular substance couldn't possibly have been on your "avoid" list -- when in fact it had always been on your "avoid" list, but the mention of the substance just never came up.  You assumed the substance in question wasn't present at all -- and they assumed it wasn't a problem!  If it had never come up in conversation, it couldn't have been explained or addressed beforehand.

The "testing" process behind figuring out, "Is something in this environment triggering me?" is interminable and exhausting, often requiring several bouts of severe reactivity for one to be able to say, "Something here is really bad for me."  To drag others along mentally as one goes through this process is just . . . socially unthinkable.  The way I see it, understanding toxic injury is burden enough to others, just as it is, without my mentioning every single loose thread that I'm trying to tie up as I go along.  And the process of convincing others of all these possibilities and "tests" and conclusions . . . . .

Way over the top.  I find I'm lacking both the energy and time -- and other people's energy and time! -- to go over such minute details with such frequency.  And so I ask, even beg, others who already know me to begin browsing through this blog at their own convenience to get a true "handle" on toxic injury and toxins in common products.

People have misunderstood my writing of this blog as some kind of "therapy" for me which will be able to clear my head of tensions or what have you . . . in order for me to heal -- I suppose psychologically -- from my toxic injury.  This is not the case.  I get no catharsis and no comfort from writing these posts.  On the contrary, I often get more discouraged and worn out than ever!  But one must take the time and effort to plant something if one ever hopes to see it grow.  I seek merely to disseminate accurate and useful information to further people's understanding of toxic injury and its ongoing ramifications, so that all of us may better address it and assist each other properly.

Cheers to you on this breathtaking Spring day, and happy socializing!

~ Carolyn

Naming the Beast

The word "sensitivity" in "chemical sensitivity" has always troubled me.  If my cellular defenses against chemicals were still perfectly intact and I were hearing about a "chemically sensitive" person for the very first time, I confess I might feel an ugly backlash in the privacy of my mind and heart.  I might look at the person sideways, wondering what type of self-centered coddling was driving such hysteria.  I might be tempted to tell the poor person to "straighten up and fly right."  I would be irritated.  The term would rankle me. 

It does rankle me.    

I associate the word "sensitivity" with the emotional connotations of "hypersensitivity" -- an overly sensitive nature prone to taking offense at the slightest thing.  Translated into the physical realm, the term "sensitivity" conjures up visions of flagrantly effusive and paranoid hypochondria . . . not to mention the maddening narcissism of excessive self-preoccupation. 

So, when I use the phrase "chemical sensitivity" or "multiple chemical sensitivity," I feel as though I've agreed to play ball by somebody else's rules -- rules by which I've already lost the game.  I believe now that, by calling myself "chemically sensitive,"  I've unwittingly consented to demean myself as an allegedly sappy, weak character with an allegedly sappy, weak physical constitution goaded on by my allegedly sappy, weak, and presumably self-consumed emotional disposition.  Never mind the chemicals -- the matter of chemicals is quickly forgotten in favor of the more visible, tangible thing at hand; namely, me.  With that, the spotlight is already shining on the wrong end of the problem.

Having pondered this long enough, I'm now choosing to refer to MCS as "toxic injury" -- harm done by actual poisonous substances to the cellular defenses of the body.  This term, I believe, puts the emphasis where it belongs:  on the toxic substances.  Focusing on the victim's personality, state of mind, or presumed character flaws is a handy and often effective distraction fomented by the opposition.  The essence of the matter is this:  EVEN an extremely irritating and self-consumed hypochondriac can fall prey to toxic injury.  As can the most rational, selfless, balanced humanitarian.  Personality traits neither rule in nor rule out toxic injury.  Toxic injury is so very real and so very bad, it stands boldly on its own.

And so it happened that, this very evening, the mouth of the beast (a neighboring dryer vent) opened to spew out its carcinogenic, nose-burning, nerve-crippling fumes into my friend's backyard, instantly ending our conversation and my visit.  (There were lesser but potential irritants inside, so outside had been deemed better.)

Within seconds, the invisible cloud of caustic scent overtook my friend's entire house and yard.  Her windows, far from airtight, would not have been sufficient to block the fumes.  As I ran to the shelter of my car, the insanity of it all hit me hard.  "'Sensitivity,' my foot," I thought to myself.  "This is slow and steady poisoning, over and over and over again."

Yes, some are poisoned and disabled sooner than others.  But how horrifying it is to have to contemplate who will be better off, in the long run -- those who can smell this stuff and feel it now for the poison that it is, or those whose bodies are literally swimming in excessive amounts of it, while they are totally unaware of its tenacious, destructive strength?

The chemicals in common laundry products and other common products really are "that bad."  Under such dire conditions, the last thing I want to do is rankle unknowing others by introducing explanations of toxic injury with potentially irritating and distracting terminology which helps to discredit me the minute I speak.

Where does that leave the rest of my blog, which is bursting at the seams with referrals to the syndrome of "MCS?"  It leaves the rest of my blog just as it is.  I fully recognize that the word "sensitivity" is an accepted medical term in its own right, applicable to many different types of physical sensitivities.  I fully recognize, also, that "Multiple Chemical Sensitivity/MCS" has become a common "language" of choice for the phenonemon and ensuing repercussions of toxic injury.  Furthermore, I fully recognize that I and many, many others have grabbed onto the subject of toxic injury and its repercussions by this very name -- "MCS" -- and that the experts whom I tremendously respect are also using this term.  I am not in any way attempting to downgrade those who continue to use this term.  How could I?  I wouldn't have a leg to stand on.  I, myself, have used the term "MCS" for 20 years now.  Please rest assured that all of you, no matter how you choose to refer to the syndrome of toxic injury and its destructive ramifications, have my ongoing respect and regard.  I'm putting my new point of view on this matter "out there" specifically for your reflection and discussion.

I've been suspecting for a while that there is an unspoken dignity to the phrase "toxic injury" which the phrase "multiple chemical sensitivity" simply does not enjoy.  I believe this because I've seen at least one person give clear concern and immediate attention to the issue when it was called 'toxic injury" as opposed to when the issue was approached with the less definitive, less assertive-sounding term "chemical sensitivity," or "MCS," or the "certain smells make me sick" approach.  "Multiple chemical sensitivity" is also a more cumbersome phraseology than the short, sweet, and firm "toxic injury."  Finally, I believe that the word "sensitivity" -- which comes across in casual conversation as a tentative, vague, and highly subjective term -- fails to do justice to the outrageous resultant phenomenon of one's being repeatedly poisoned by unnecessarily toxic elements in commonly used products.

"Toxic injury," it seems to me, gets straight to the point.  And the negative emphasis is on the molecular aggressor, not the victim.  While it is likely that some toxically injured people were, in a sense, "set up" for this destructive invasion of their bodies by prior unrelated illnesses, medications, trauma, or other serious stressors, the fact remains that a person whose biological "walls" have, in the end, been breached by toxins now becomes a repeat victim of toxic injury whenever he encounters even small amounts of toxins.

Toxic injury is an injury that just keeps multiplying as it goes along.  Moreover, the more toxic products there are in public and private usage, the more rapidly we're lowering the threshold for that initial toxic injury to occur to more and more people.

The equation is alarming. 

Which term do you favor -- "multiple chemical sensitivity" or "toxic injury?"  Please let me know your thoughts.

Cheers!

~ Carolyn

Looking Forward to Hearing from You!

Hello, Friends!

I'd just like to take a moment to urge you to contribute your own comments to my blog -- and your own thoughts in reference to the articles/research pieces I've linked to that are most relevant to you, personally.  You don't need to "sign in" first or type out any letter code.  And there is no one "favored" subtopic here.  I did, however, put HOMELESSNESS in capital letters, up top, because so many of us MCS sufferers have already faced, are presently facing, or might face in the future the actual or potential reality of homelessness.

Also, if you support my effort, via this blog, to increase public awareness of the growing scourge of MCS, I ask you, please, to join this blog as a "Follower."

It would be very interesting to know what your own primary MCS triggering substances are, and what your own experience has been in your attempts to explain your MCS to others.

I am no medical specialist -- just a layperson suffering and coping for years with MCS.  Neither my own words nor my links are meant to replace the diagnosis, philosophy, advice, diet, treatment, or prescribed medications of anyone's doctor(s).  Nor do my links imply that I agree with every single idea of every single author to whom I link.  I am simply following a "general" line of informational relevance in each link I choose.

I provide, here, links to the best pieces I can both locate and link to successfully on the Web.  I choose them according to my own personal experience and observation -- which in the end must be termed largely "anecdotal."   Still, I believe there is a distinct "logic" to our individual MCS anecdotes and to our predictable systemic reactions.  I hope to bring these predictable patterns to the attention of scientific minds who can concretely pursue the more detailed questions these patterns raise.  May these logical patterns of MCS reactivity reveal themselves in my own writing, in your comments/stories, and in the links I can manage to provide.

Also, I wish to state that part of my job, as I see it, is to provide "apologetics" backup for those who are having difficulty getting the MCS message across to others in their midst.  The word "apologetics" does not mean "an apology" but rather the effort to defend, logically, a premise or cause.  I am attempting, therefore, to provide the best "defense" for the reality of MCS that I can.  Your own ideas for the apologetics of "explaining MCS" are most welcome!

Hoping to hear from you soon!  Cheers!  

~ Carolyn

Scorching Injustice

"Just think positive," several people have advised me over the years, urging me to stop being "afraid" I'll get sick from synthetic fragrances in my midst.

"Afraid," they say, while standing before me with their fragrances or synthetic room deodorizers (including scented candles, even unlit) burning into my face, as the swelling in my nasal passages has already begun and I'm starting to feel the typical "tipsiness" that antagonizing chemicals bring on.  The inherent cruelty of this situation never escapes me.  I'm called upon to "prove myself" just as it's beginning to be hard to form logical sequences of thought -- and equally difficult, motorically, to shape the words that I desperately need in order to respond effectively.

While this is happening, such bearers of fragrance often debate with me politely regarding my tacitly presumed hysteria.  The debate can be as lengthy as a calm and gentle conversation which they seem to view as some kind of psychotherapy in action.  Or, it can be as brief as a casual laugh and a light comment -- both approaches conveying, in other words, that people describing systemic reactions to commonly used products can't be taken seriously.

All of which boils down to the fact that their nonessential personal preferences of scent and decor take clear and decisive priority over my health for the next few days.  They get to fill their rooms and surrounding upholstery with the cloying, persistent byproducts of synthetic room deodorizers (including synthetically scented candles), wear this or that brand of scented product as they approach me, then implicitly accuse me of some kind of destabilizing mental excess when I suffer physically from these things or attempt to avoid them.  I, in turn, get to sit or recline, immobilized and useless, overtaken by massive head pain plus visual and motor disturbances -- for the next few days.  Then, the next time I come into these people's midst, they will vaguely recall, "Oh, yes, you're very sensitive to fragrances, aren't you?" as they approach me (or as necessity forces me to enter their synthetically scented rooms), and the whole demoralizing and health-injuring routine begins all over again.

As though I'd said absolutely nothing.

"Afraid" . . . . .  Are pollen-allergy sufferers afraid of pollen?  Is that why their eyes stream with tears?  Moreover, can't one be "forgiven" (for lack of a better word) for having come to know, in advance, what one's own body definitively reacts to -- and for hoping to avoid a recurrence of this particular reaction?  Natural-allergy sufferers are forgiven for this all the time -- no questions asked.

As for "thinking positive," I already am.  Like the Man of La Mancha, I intend to keep dreaming that "Impossible Dream:"  My dream that others will realize that MCS is a real, medical problem.  Which, by the way, is the very reason I'm writing this blog.

Those who wish to call me "afraid" of chemical antagonists -- or who prefer to think of me as "hypochondriacal" regarding the real systemic reactions my body undergoes -- may certainly persist in this to their heart's content; but then, if there's any consistency at all to their thinking, they're going to have to think twice before they (or others they know) take medication for their seasonal allergies or avoid staying outside in certain weather.  After all, shouldn't they just try to "think positive" first?  Shouldn't they make absolutely sure that they're not simply "afraid" of flowers, weeds, or the great outdoors, itself?  Perhaps they've convinced their bodies to form antibodies to these natural substances . . . . . just as they wonder (aloud, in my presence) if my mind has possibly convinced my body to react with migraines and motor disturbances to unnatural, toxic chemicals.

And, for the record -- I do not really believe that "natural allergy" sufferers have brought their allergies on themselves (!), any more than I believe that a chemically sensitive person has brought on his own MCS.  I wrote the above paragraph to illustrate the skeptics' inconsistent stance toward "natural" allergies versus their stance toward systemic reactions to toxic chemicals.

The injustice of this inconsistency is scorching, and too many people's bodies are now feeling the burn.

I, for my part, am channeling that "burn" into a "burning" desire to educate others -- as thoroughly and quickly as possible -- about the reality of MCS.

It's truly the most positive earthly action I can take to address this crisis before I sputter and burn out completely.

Please read this eye-opening link from the Massachusetts Nurses Association detailing fragrance-free information and policies:

http://www.massnurses.org/health-and-safety/articles/chemical-exposures/p/openItem/1346. 

This link itemizes nicely and concisely the systemic effects caused by the chemicals in many personal, deodorizing, and cleaning products.

Cheers!

~ Carolyn

MCS Denial

Good morning!

What discourages me most from writing are those intervening, demoralizing "down" days -- days spent recovering from an unavoidable exposure to the usual, so-called "harmless" chemicals on persons and clothing.  Although I cannot help the way my body feels at such times, those recovery days have become an embarrassment to me, a black mark on my efficiency, and, as the MCS-denying world sees it, a major strike against my credibility as a human being.

Being human and feeling massively outnumbered, I, too, start thinking this way, butting my head against the wall to "feel OK" in spite of the fact that my body is shouting at me:  "REST!  REST!"

I am pushing myself through that dread-filled embarrassment to write today.  Yesterday was spent in a stupor of exhaustion -- which I, in dutiful conformity with the MCS-denying population -- denied; and so I did not rest. 

I cannot tell you how many times I have capitulated to MCS denial.   Perhaps at some point in the development of this blog, this insane people-pleasing reflex will finally leave me to make way for the truth:  I did not cause the existence of these toxins that are slowly killing me, I did not choose to be disabled by them; and I cannot help it when my entire person feels their repugnant, systemically sickening effects.

Whoever out there is similarly afflicted, may we support each other with this very serious reminder.

If you have an MCS story to relate, please share it here!

And, cheers!

~ Carolyn