Westgate Travails or “Why isn’t anybody listening?”

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They have switched the cleaning schedule for our building lobby to the early evening hours.  Those are the hours during which I retrieve mail and packages or exit the main entrance to take an evening walk.  I had a rather severe reaction last night to the cleaning chemicals.  I am better this morning.  I did a full retraining, but the flood of memories of more perilous times came roaring back.  I felt the helplessness, the hopelessness all over again.

It seems I always want to change people.  I am reminded of an episode in an office where I once worked.  It was a small office in a converted Victorian house.  There were ants all over the front stoop.  (Which by the way was seldom used).  I had what I thought was a very respectful and informative meeting with the office manager. I was armed with pamphlets about the uses of harmful insecticides and their effects on even the non-reactive humans.  I thought she was listening rather attentively.     At the end of the meeting her only comment was “I just need to kill the ants”.  And the pest control people were dispatched that very afternoon.

I don’t know that you can change people’s minds.  When you are in recovery from anything, really, there is a feeling of constantly having to let go.  When can I just be heard?  Isn’t anybody listening?

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I’m still here

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I am still here.  This is not a simple statement.  I will celebrate two years in October of working the Gupta Program.  Sometimes I start to notice smells and I get discouraged thinking that I have not made much progress.  Nothing could be farther from the truth.  I was reading a success story which Ashok circulated the other day.  I was reminded of all the things I did for almost twenty years to accommodate my MCS.  I have to remind myself how far I have come.  Smells are really just irritations.  I still do the seven step process and the irritation disappears.

Two years ago I was actually considering lining my living space with foil.  I was spending most of my time in my car.  I was using public facilities according to the safety of their bathrooms.

I went shopping today.  I walked into a department store right through the perfume section.  I thought about the perfume, but I knew that it would not hurt me.  Yes, it was strong, I still don’t care for perfume.  But the big difference is that I knew that it would not hurt me.  The amygdala cycle did not kick into high gear and start running like a hamster wheel.

Yes, I am oh so grateful.

Normalization

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I am lucky to have a very supportive partner in my recovery process.  I can ask him things like, “Do you smell anything?”  It sounds like an ordinary question.  The part that is not ordinary is that I am asking in order to judge how I am improving and normalizing my smell.  I know people will say, “Well, what is normal?”  For someone recovering from MCS that is almost a loaded question.  Many people are bothered, for instance, by strong perfumes.  For most people they are just irritants.  If strong enough they may cause a headache in an average person.

One of the permissions which I have had to give myself if that of it being okay to be irritated by a strong odor such as perfume.  Being irritated and having strong MCS symptoms are two different things, however.  Although I do wonder if the two are linked in some way.

In other words, the normalization process is learning what is a valid and appropriate response for yourself when you smell a strong perfume.  The only way I know to judge the response is by asking someone close if they smell anything.  In this way I have been able to judge my response and in some ways calibrate my reaction.  I think this is a very subtle change that comes after one has worked the Amygdala Retraining Program for a few months.  In my opinion, the Amygdala has to calm enough in order for the more subtle changes to take place.

And then there is the oddity of cigarette or cigar smoke.  I have had experiences in the last few months where cigar smoke, in particular, has smelled really nice.  I am speaking of residual smoke and not directly breathing in the smoke.  I have heard of other people in recovery trying to identify smells.  I think that is a good approach as well.  For people with MCS the chemical based fragrances just smell like chemicals.  They never have any real identifiable odor.  I have tried this approach as well and it can be interesting.  Elevators are a good place to try this out as people leave all kinds of odors behind in an elevator.

I hope this helps those of you who are in recovery whether or not you are using the Gupta Programme.

Be well.

Moving Forward

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Well, I just finished a three night stay in a hotel and attended a three day conference with over 700 people.  I think that only a chemically sensitive person could understand the immense significance of this.

I did well.  It was challenging at times, but I paced myself.  Pacing is a big part of the Gupta program.  I also had to put things in perspective and realize the magnitude of what I was actually doing – staying in a hotel !  The important thing is to not make connections between the perfumes and air fresheners and how you are feeling.  In the Gupta program you learn how to break that connection by identifying your negative thoughts and learning to stop the cycle which those thoughts create.  The program is all about breaking the cycle of reaction by breaking the cycle of negative thoughts.  Ashok (Gupta) often tells people to talk about their recovery in terms of breaking an adrenaline cycle.  After I worked the program for a while, I could actually feel a different sensation in my brain when I would stop the cycle.  I am a highly sensitive person, as are many of us with these types of conditions.  (Just a reminder that this is a brain malfunction and not a psychological issue).  Being able to feel the changes in my brain may not be a universal experience of recovery, but it has been for me.

So today is the first day home after the trip.  There are many things that are different.  I do not feel the need to wash everything that I had in the hotel room.  I can still smell the hotel when I walk into my apartment and it kind of smells good, like a hotel.  I can, however, choose to not like a particular smell, but that seems normal to me.  Perhaps I will write in the future about the role of normalization in the recovery process.

On the journey

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The journey of healing is never linear.  I could start at the beginning and attempt to relate the events as they happened but it would force a linear template onto what is more of a spiral event.  I think the best approach would be to address the subject by topic or particular reactions or lack thereof.

For example, I go about my day and sometimes I don’t think of where I am going or what I am going to do.  You have to understand that before last fall, every action of my life was measured against whether or not I was going to have an exposure.  I hardly ever think anymore about going into a public bathroom and being exposed to air freshener.  I still would rather that the spray type air fresheners not be used, but I don’t even think about it most days.

I will not try to tell the story in a straight line, but focus on how my life is different.  To borrow from the 12 step program:

What your life was like.

How you got here.

and What your life is like now.

Underserved or Invisible?

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I have been on a quest to once again find an energy worker or body worker.  The accoutrements of those professions are almost never safe for the MCS community.  It becomes tiring to contact people who claim to be healers, but must use scented candles, incense, essential oils, and more in order to do their work.  I was in a group situation one time in a person’s home.  We were there to learn about meridians from a friend of mine who is a Chinese medical doctor.  The homeowner host wanted to do a meditation before the group started.  I asked that she not burn incense because my head would get very full with pressure and I would have to leave.  Her response was  “maybe your head needs to be full”.  She very angrily and reluctantly agreed to not burn the incense.

As anyone in the MCS community knows, it is almost impossible to find a practitioner who can accommodate us.  Countless times have I gone over every possible scenario just to have them walk in with some type of “natural” product on that I cannot tolerate.

Just over the weekend I had someone over to give me a Reiki treatment.  I went over everything with him and thought it would be better if he came to me.  He walked in covered with some type of essential oil product.  I decided to try the treatment anyway and I lay there for 45 minutes with my heart pumping in my head.  The treatment didn’t have a chance of working because I was in constant reaction.  He was new to the profession so I didn’t say anything to him.  It just didn’t seem to matter or be appropriate.  Luckily the treatment took place in another space that is not connected to my main living space.  That was a good plan on my part.

Product labels are so very important.  I have pointed out product ingredients to countless people.  Most of the time they are surprised to find that the products they are using contain scents.  It seems as well that people believe that natural is safe.  I think most of this information comes from the marketing of natural food stores and the like.  If things are bought at a particular store then they must be safe.

I guess the takeaway here would be the continual need for education.  Some people are more educatable than others.  We could all use a reminder to have more patience.  If you do not live this life with MCS it is very nearly impossible to understand.

Cigarettes

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I really do try to understand why people smoke, I really do.  I am not one to try to point out research, etc. as to why people shouldn’t or as to why I don’t want to breathe their second hand smoke.  All I know is that I get a piercing headache, head pressure and scratchy throat with even the faintest exposure to cigarette smoke.

Our downstairs neighbors were smoking last night, AGAIN.  Our building is a non-smoking building but the condo board does not have any enforcement procedures in place.  The smoking ban is based on voluntary compliance.  We don’t really live in a “voluntary compliance” kind of world, now do we?  I imagine that they think by going onto the balcony and opening their door that the smoke will be undetected.  However, when they open their balcony doors there is a suction created and everything from their apartment floods into mine.  And then, particularly in hot, humid weather, they close the balcony doors and then fire up the air freshener/incense to mask the smoke.  They are not fooling anybody, but they get away with it because they know they can.  They do not own their unit and their leasing agent who represents the owner has told them to stop smoking.  I am sure that they are really scared about that warning.  I have been told that it is very difficult to evict someone even if there is motivation on the part of the leasing agent and owner.

So why don’t we just sell out and move?  I will be posting about safe housing at some future point.