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.
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.
If I look into the darkness of the mind what do I see? I am breathing and I feel peace. My mind is clear and the brain fog is gone. I no longer monitor for chemicals and smells. There is relaxation and freedom. There are choices. There is quiet joy.
Please join me as I come home.
My Labyrinth Journey
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.
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.
I had a post from an MCS blogger pop up on my screen today. Evidently I had subscribed to the blog a good while ago. Anyway, this person attributes recovery from the Gupta Programme to people just having anxiety and not real MCS. She uses the term real MCS repeatedly. I commented on her post and just said that I respectfully disagree and referred her to my blog. She commented on one of my posts here.
I moderate comments for this very reason. I don’t want vitriolic comments on my blog. I then looked at several more posts on her website. There is just such anger there. I know there is a train of thought that says something like, that which you resist is what will make you well.
I used to think that was just silly. Really though I guess that is what happened with me. After my visit with Dr. Schrader I could tell that working through my resistance to some type of brain retraining is what saved me.
I do not know this blogger or what motivates her. I just know that I have felt this anger before from people with MCS. I don’t want to say hurtful things, but I do have observations. Many years ago I attended a support group for Chronic Fatigue sufferers. My first thought at that meeting was “What would these people do with their lives if they didn’t have their illness”. I have had people say that to me before and it made me very angry. I suppose that is how I can understand the anger.
We can all go to those places where we can think about why am I holding on to my illness or what benefit does it give me. I don’t know if there is truth to that kind of thinking or not. We can all hold onto our own beliefs a little too tightly at times.
All I know today is that I am calm most of the time. I was at a board meeting the other day and someone started to complain about the smell of a candle. I was shocked that I hadn’t even noticed the candle was burning much less the smell. I am not here to prove anything to anyone. I am here to just share my experience, strength, and hope. If you like what I have to say and find it useful, then please leave a kind word and I will post it. Otherwise, please go somewhere else.
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.