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 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.
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.
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:
So just as I was claiming my identity as a person with MCS an email popped into my inbox. It was from a friend who had discovered neural retraining to treat MCS. Several years ago I had tried a set of affirmations which I received from a process called Holographic Repatterning. I read through them many times a day for a month and saw some improvement. However, it just didn’t seem like enough and it was not very sustainable to constantly read them although I eventually memorized them. The repatterning practitioner turned out to be rather aggressive and abusive telling me that I was afraid of chemicals for no reason and that I basically needed to change my mind. I was also going to an acupuncturist at the time and he said that I couldn’t just stop reacting. His opinion seemed much more sane than the other more aggressive one.
So here I am this many years later considering the neural retraining. I have been watching videos for both the DNR method of Annie Hopper and the Amygdala retraining by Ashok Gupta. I have also read a very good article and review of the methods by Cynthia Perkins, M. Ed. She really explains the causes of MCS according to the limbic model. I have always thought that the model put forth by Iris Bell was the model that made the most sense to me. Practitioners have always stressed the immune system and I have always held firm that the immune system is not the problem. The problem is in the brain. We are not talking about psychology here. The limbic model basically talks about brain malfunction as a result of an initial insult of chemical exposure.
The Gupta explanation makes a lot of sense to me. I have linked their names above to their respective websites. I will keep you posted on which method I choose. In the future this blog may well turn into a log about the next step in my healing journey.
I am back in the apartment after the hallway painting. We were going to request that the paint was no VOC paint. When we talked to the contractor he said that they had been using the no VOC paint all along at the request of a board member. We live in a condo building that is managed directly by the condo association board. After the first week of plastering and prep work, the painting started. I had made plans to spend the nights at a friend’s house in the country. When the painting started I checked the paint cans and they said nothing about no VOC. I called the paint company and read the product numbers to them. They informed me that this was just their standard paint. I am glad that I didn’t rely on the paint being no VOC. I have read where that designation is not very reliable, but that is for someone else to investigate and write about.
I spent last night in the apartment for the first time since the painting in the hallway. It was fine in the early evening, but I started to experience some cloudy thinking. I taped the crack on the hinge side of the door and that helped a lot. I had already installed weather stripping on the other two sides, but the hinge side was too tight a fit for the weather stripping. Masking tape seems to help. It will pull off the paint most likely, but I cannot tolerate blue tape.
I am running the air conditioning which seems to be fine for now. It is cooler weather, but the north wind will not come into the windows if I open them.
I received an email from someone who is trying neural retraining. I have been researching that option. I plan to post on the topic of healing sometime this week if I can stay in the apartment long enough to do so. It is frustrating to not have a computer for a week. I just cannot sit in a coffee shop or other public space for very long. Not only are the chemicals a problem, but I cannot concentrate with the loud music that plays in most public spaces.
I was talking with my attorney today about being exposed to the new paint and carpet. He said we need to plan ahead to protect my health. Don’t wait until they have to carry you out on a stretcher with cardiac arrest. I have tried to educate him about MCS and the symptoms. He is a good man and a good attorney. He helped me out of a very tight spot in 2013. I plan to write about that experience in detail at some point. For now let me just say that my illness was criminalized. There will be more on that later. What I learned today, though, from my conversation is how hard it is to actually explain the symptoms of MCS. It is not like a heart attack and very few of us would call 911 when we have an exposure. At least I know I wouldn’t. I think people are used to certain conditions having a certain set of symptoms and MCS just does not fit well into that model of illness. It is such a strange and multi-symptom condition. How can people relate to brain fog? How do people react if you tell them that their cologne or perfume makes your brain feel like two metal knitting needles are being jammed into your forehead and through the back of your head and that your brain now feels “jerky?” It is a dilemma.