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.

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The days go on

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I am just now thinking about how nice it is to not worry about new things.  I don’t worry about a new car.  I even made it through new carpeting in the hallway of my building.  I do notice things still, but I have to stop a minute and feel the enormous gratitude in how far I have traveled in this journey.  I just ordered a little pressure point therapy ball and I didn’t even think about whether or not it will smell when I receive it.  Just 18 months ago the MCS prevented me from having anything new.  I would have to air things out for weeks before I could have them inside the house.

I am just sitting here in the afternoon as the light is fading and feeling very grateful.

Needing to be Well

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Do you need to be well?  The answer to this question seems obvious.  Who wouldn’t need to be well?  Life would be so much different and I would be free.  What does that freedom look like?  How would new life look?

Many of us suffering from long term chronic illnesses have become very used to the lives we are living.  Rutted paths can be very hard to change.  It takes a lot of thinking to uncover our motivations and the roots of our illness.  Even if we are offered a magic pill we may still have doubts about taking it.

There is magic or there is no magic.  Is the choice ours?  What do we do when we are well?  What is life going be like without the illness?  What will I do with all of the energy that I put into managing my condition?

These are questions that need to be asked as we are recovering.

Observations on MCS

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I do recognize that everyone is different.  People who have MCS differ in many ways.  I am not an expert.  However, I do have some observations.  These observations are probably more helpful to people who are really trying to figure out the underlying causes of the condition.

I have noticed in the MCS community that there seems to be a need for hierarchy.  A very common thing to say is “They are not as sick as we are”, or “They haven’t been as sick as long as we have”.  It is almost as if we need to set ourselves apart as being very, very sick for a very long time.  Does this give some sort of status to the sufferer?  I don’t know.

Also, as I have noted before, there seems to be a lot of anger.  Quite naturally this would make sense in light of a person’s not being able to be out in the world without having a myriad of reactions.  One does wonder, though, if at least some of the anger predates the onset of the condition.

Another thing is the resistance to the suggestion that MCS is a psychological condition.  I, personally, do not believe that it is a psychological condition.  It is, however, a thinking condition.  I hesitate to use the word mental because most people have a hard time drawing a distinction between mental and psychological.  I am not speaking in clinical terms, but just making a distinction between a clinical psychological condition and a “thinking disorder”.  The latter being much of what forms the basis of the Gupta Amygdala Retraining Programme.  The suggestion that it could be a psychological disorder brings up incredibly strong emotions in sufferers of MCS.  I understand this reaction as I once had the same emotional reaction.  I posted earlier about my experience in talking with Dr. Shrader in Santa Fe about MCS.  He suggested that the problem lay in faulty thinking.  It was hard for me to hear that in a way that didn’t imply that MCS is a psychological condition.  He kept stressing to me, however, that it was mental in that it was about the thought process.  He helped me to accept that, perhaps, one’s thoughts are the underlying cause.  That interaction set me on my current path of recovery.  I am truly grateful.

The Individual

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I have been thinking about the woman who seems so intent on debunking all of Ashok’s theories.  I feel sad for her.  She states defiantly that MCS has nothing to do with anxiety, but her own anxiety is so apparent.  On the other hand, the program may not work for her.  I have no way of knowing which people would benefit from the program and which would not.

Let’s take this idea out into the world in general.  Do we ever really know what is best for another person?  Could it be that it is always better just to listen and support people on their own personal, individual journeys?

Granted, there are times when we need to try and guide people to better choices, but ultimately the decision always belongs to the other person and not to me.

So I can feel sad.  I can want recovery for everyone.  I am not the one who decides.

Being Tired

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Being tired is the place where I believe that MCS and Chronic Fatigue recovery intersect.  Ashok Gupta talks about the Amygdala Retraining Programme as being one which deals with getting rid of negative thoughts.  I have discovered that negative thoughts really do impact our energy levels.

Just recently I was becoming very tired in the late afternoons.  My diet had not changed and I was sleeping very well at night.  I couldn’t quite figure it out and grew concerned.  Then I started paying more attention to my thought process.  I realized that I was not being very diligent with identifying negative thoughts.  It was a time with some added stress as well and the negative thoughts were just piling up as the day went along.  I started back with my commitment to the program, with more regular meditation, and just more closely monitoring my thoughts.  Now I am not having those slumps anymore.  I had Chronic Fatigue several years ago and I know what that level of fatigue feels like.  That level of fatigue is more than a slump.

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.