On a Summer's Day

Hello, friends,

It's a lovely day outside and, after a long time away from this blog, I'm inspired to write once again.

While I wouldn't put myself in a room with a burning, synthetically scented candle and other strong chemical irritants -- and perhaps not with a non-burning synthetically scented candle if the scent could be felt by me (some synthetic scents carry an abrasive texture when smelled by chemically sensitive people) -- my chemical sensitivity has gone way down.

And yet I would not linger in front of a laundry vent or in a place where heavy laundry scents were evident.

However, lately I have enjoyed the experience of smelling various chemically scented products for the sheer beauty of the scent -- despite my hard-earned knowledge of the drawbacks.  Still, knowing the extent of the damage that synthetically scented molecules -- whether perceived by the senses or not -- can do to the body, I cannot disregard this invaluable, perhaps life-saving, information.

I'm at the point where I have to make decisions about many such products without the exponentially amplified chemical sensitivity to guide me.  This is progress -- tremendous progress.  I've done not a thing to have earned it, except to have been treated with herbal products for Lyme disease two summers ago.

I wish to leave all of my research/links in place for those whose chemical sensitivity is still active and mushrooming.

My writing here, going forward, will deal with a variety of topics both physical and biological, from an anecdotal perspective supplemented by occasional scientific/anecdotal links of a relevant nature.

I'm very happy to have learned that, as opposed to a fulminating, systemic problem, I have inflammation in one foot due to an orthopedic, mechanical difficulty.  For months, I'd put off looking into the matter for fear that I'd be told I'm a metabolic disaster.

Imagine my surprise to learn that surgery on a little toe, over 30 years ago, left the toe so unstable and strained that I'm walking funny -- the body's involuntary compensation for the weakness and instability of that one toe.  Other toes/parts of the foot grow inflamed as a result of the motoric compensation . . .

The good news is that this can easily be alleviated with a new surgery on that toe . . . which I never thought about and did not know.

It's wonderful when something is not systemic and not a disaster -- just a challenge.  :)

Cheers!   :)

~ Carolyn

      

Trying to Realize

I remember starting this blog in sunny May weather, 2011.  My incentive was high and the words were all stacked up inside of me, ready to be called upon and arranged for posting.  The chemical "burn" of neurological proportions needed to be described for those who had never felt it and who disbelieved that such a chemical sensitivity reaction could occur.

I set about my work, making some headway.  I felt good about this venture.

Lately, I've been getting down in the dumps every time I look at this blog.  I've not been able to work to bring in new readers, because I haven't had any chemical reactivity stories to tell.  I've read those of others lately . . . and I've felt set apart -- left out.

Wait a minute.  "Left out?" I asked myself seriously last night.  "Left out" of chemical sensitivity reactions?  So much so that I have nothing to write about them?  "Do you realize what this means?" I asked myself. 

It's really hard to get this through my head . . . but . . . for the third time or so, I'm reminded that I'm actually doing much, much better.  While I miss that immediate bond with other MCS sufferers which would have inspired me to write and write and write more and more and more about this issue . . .

I've had to shore up my awareness and my gratitude.  I'm getting better.  When will I believe this and actually react to it?   I've been so lonely looking at other people's MCS postings, I haven't been able to work through that and actually embrace the fact that I'm healing from this physiological, neurological nightmare.  Strange to say, I actually think I feel a kind of "survivor guilt." 

So my recovery is dawning on me slowly.  Very, very slowly.  I suspect that, once I can grab hold of the fact that I'm getting seriously better from MCS -- and internalize this as a reality -- only then will I be able to discern what kind of assistance I can best "offer back" to the MCS community through this blog. 

After over two decades of having to give up doing this, and give up doing that, and take time off to let chemical reactions run their course, I've now got all of this leftover sludge in my system.  I'm very disappointed in myself for that.  This probably has a big effect on my ability to rejoice.  So I've set about a walking plan.  I don't care what the experts say -- one walk a day isn't nearly enough.  About six walks a day, for me, would begin to turn things around.  Every so often, I tell myself, "Just put that coat on and get outside."

So I've begun building up my walking length and frequency.  It has to be done.  In rain, in snow, sleet, hail -- whatever.

As I trudge up and down the road, each footstep reminds me that my legs still have power in them, my lung capacity can still expand, and I'm moving forward.

I'm left with questions.  The first one being, "So was the chemical sensitivity actually a peripheral manifestation of Lyme disease?"  I mean this in the same way that one becomes sensitive to sound, light, smells, tastes, and touch when one has a fever . . .   When we're sick, our senses go on red-alert as part of the sickness.  And some sicknesses affect certain bodily systems more than others.

My second question is, "When I took the herbs to wipe out the Lyme, did the herbs also chelate out some additional toxins which had been blocking my ability to recover?"

My third question is, "Did getting well from Lyme and setting everything straight immunologically simply free up my body to put up a stronger defense to common chemicals?"

All of this having been said, I realize I'm not equipped to pronounce on these answers.

These questions will probably be with me always.  I drop them off here in order to inspire both reflection and hope in those who are still suffering in a big way with MCS, and in those who are trying their best to help them.

Cheers!

~ Carolyn

More and More

After beginning the day very energetically, I underwent a global slowdown when I clonked my head hard on a tile wall this afternoon while cleaning.  But I'm going to work my way through this post to capture some more cogent thoughts I'd had earlier today.

I spent my morning in a department store.  When chemical sensitivity mushroomed in my life, this kind of thing became a once-a-year event, if at all.  It was hot and dry inside, for sure, but there was a profound difference in my reactivity to scents and to the natural gas heating.  Even if a migraine were, in fact, going to happen later this day or two days from now (this is now impossible to discern, given that I clunked my head and a headache would be a natural thing), I can still report here that, thus far, my reactivity to synthetic scents has already been profoundly different this day from what it would have been, under similar conditions, in previous years.

And now I'm going to walk into some comparatively uncharted territory in reflections on chemical sensitivity  . . .

I'd like to talk about memory.  While many scents still remain immediately aversive to me and I instinctively pull away from them, they're not "getting in," systemically speaking, as they had been accustomed to doing.  Those few seconds or minutes of my unwanted exposure to them have not been doing the neurological and inflammatory damage to me that they used to do.  I'm not getting that unmistakable neurological buzz and pulsing around my forehead, nose, and eye sockets.  I'm not getting that systemically sickened, "sideways" feeling.  I'm walking through these scents, sniffing them, and often coming away "okay."

And, sometimes -- this is the thing that I wondered if I'd ever be able to say again -- I'm enjoying them.  Now that (pause of speechlessness) - that is something.

Can you believe this?

I do, because I'm living it.  It's incredible.  There's an amazing amount of "normal" coming back to me.  And with it comes . . .

"Snow flurries" of memory.  Those tiny little pieces of moments, days, seasons, and years that make up a lifetime.  Little "snowflakes" of this or that day, or a familiar kind of day, or "a day just like today," or a "season that felt so much like this" converge upon me as I drive along on various errands -- and I'm amazed at how very much memory can just shower a multiplicity of feelings and impressions upon you all at once.

Makes a person want to cry, partially with joy, partially with a bittersweet sadness -- because there's just so much there.  I have to believe that these cascades of memory are enabled by my increasing ability to tolerate, specifically, chemical fragrances.  Many of which were once a part of my daily life. 

When you're chemically sensitive, huge pieces of that "scent aspect" of life get tossed aside by medical necessity.  I'm now realizing how very much this deprivation of familiar old types of scents can impede the normal flow of memory and paralyze one's sense of continuity.  You realize what you've missed, and just how much you've missed it, often only when it returns.  [If that "often only" didn't make perfect sense, please excuse it because I can't, at the moment with my thick-feeling skull, come up with an alternate word combination.]

I personally think that this return of "familiar memory" in so many infinitesimal bits and pieces, this progressive filling in of the empty places of one's own spirit, must also have a strengthening effect upon the neurology of the brain itself.  This, in turn, would further assist the brain to return to a more normal "baseline" of reactivity to chemicals.  Basically, the more you recover, the more you recover.

If that makes sense.    :)     
 

While Feeling Like Eeyore . . .

If I'm truly honest with myself, I'm much more comfortable, in my writing here, with no salutation and no signature line.  I'd prefer to jump right in and, when I'm done writing, just be done.  So here we go:
 
When something happens to hurt me very badly, emotionally, I usually don't want to go back to the person who hurt me and say, "Look, this really hurt."  I'd rather write about it in a nonpersonal way and send it out to the world on the next breeze, so to speak . . . keeping forgiveness in my heart without a lot of emotionalism and fuss.  But -- and this is an important "but" -- I have to satisfactorily make my point when I speak of the hurt -- to whomever.  Clarifying my point, or points, to myself and others -- this is a big thing with me.  Because then, after I've worked it all out in this way, I'll have peace.

It was thus that I began this blog.  I had so many points stored up from so many instances of being patronized, screamed at, flat-out disbelieved, avoided, and picked apart verbally over my chemical sensitivity . . . I had to make those points.  I had to state them, once and for all.  In my earliest pieces, I think I really did that.

The method worked.  I realize there are probably hundreds of cogent points that one can make about the reality of chemical sensitivity; however, I believe I truly addressed the ones that meant the most to me, personally.  I backed up my points with the numerous articles in the tabs up above.

On a cognitive level, this relaxed things.  I no longer had that burning "edge" to state this or that in precisely this or that way to ensure maximum comprehension.

Then I got sick with Lyme and I had no cognitive "edge" at all.  Things were over the top in a brand new way, with swollen legs and feet.  I got the message loud and clear that something microbial was out to annihilate me.

Although the swelling has greatly lessened since the spring and summer, I still have it.  My health feels pummeled.  I get frequent whiffs of hopelessness -- and then I raise my head again.   

Which is why it's so very strange that now, of all times, when I feel completely drained and utterly defeated in so many ways, my chemical sensitivity is still lessening to a noticeable degree. 

I've wondered if, perhaps, the collection of herbal drops that I took steadily for a month or so for the Lyme actually chelated out some serious toxins that had been buried deep in my body.  It was after those herbal treatments that the improvement in my chemical sensitivity really skyrocketed.

Or was it that the chemical sensitivity, itself, had been instigated by chronic Lyme?

I know one thing:  My emotional tenor has not felt this low in decades.  That puts theories of "So you lessened your chemical sensitivity with a more optimistic outlook!" to rest.  I haven't felt optimistic at all.  I've felt gloomy, horrible.  I've felt completely unwanted as a writer, for one thing.  I don't even know why I'm writing this.  It's the equivalent of Eeyore grabbing pen and pad.

Perhaps writing this will turn out to have been "good for me" and -- this would be nice if only it could be so, which I doubt, but let's give it a chance -- for other people, too.