I think the answer is yes, at least I hope so. I found out that our front desk attendant was spraying OFF. I think she was using it like a room spray. It was all over the room. I informed her that that was not a good idea. I went down again this evening and the fragrance from it was very strong. Unfortunately she had just sprayed it and I am trying not to have a reaction. When you have had success in recovery from having had 20 years of MCS, you really don’t want to be covered in bug spray.
I think my amygdala is trying to go into overdrive. I have done the short version of the retraining several times. I am feeling better, not really symptomatic, maybe just exhausted from the emotion of it.
I don’t often blog in real time, but tonight I feel it is important. Yes, I think we can be safe, but there will always be surprises.
I passed the two year mark in October of starting the Gupta Progamme. It has been quite a journey. I am not one hundred percent and I don’t know if I will every consider myself to have reached that milestone. It is interesting that as humans we have trouble going for the “thriving” part of life. We too often settle for just getting by or for getting well enough. And perhaps, that is just okay at times. It all depends on the sum total of our life experiences I suppose. If we have been through a lot of challenges then good enough is a very fine destination indeed. It really is all relative, isn’t it?
I pretty much go where I want when I want without much attention to exposures. There was one episode during the holidays at our local hardware store. The store has been sold this year and they have made some changes. The gift section is pretty much full of scented candles, air fresheners, and lotions, etc. The air fresheners are those type with the sticks coming out of a bottle. They had every variety open on display with the sticks in the bottles of liquid air freshener. I was truly shocked. It was one of those instances where, even though I am better, I can still hold the belief that this is a very dangerous thing to do in the long run. There is always balance to be had, but this was way over the top.
I firmly believe that as a recovering survivor of MCS, I still can hold certain beliefs about the health of our indoor, in particular, environments. I very seldom have the capacity to change anything other than my own home environement (and sometimes not even that) but I can have opinions. Now the trick is to not let those opinions slide over into fear of a particular environment. I have to say that I was quite proud of myself at the hardware store. Even with all of that fragrance, I knew that I would not have a reaction because of my work with the Gupta Programme.
So I continue in deep gratitude to Ashok and the Programme. What a way to start a new year!
Happy New Year!
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?
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.
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.
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.