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.
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 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.
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.
So how did I come to have a chronic condition? I was working in a Victorian style condo office building. It was a single family home originally. These houses were eventually turned into office condos. During the energy crisis of the 70’s the house had been shut up tight. Even the windows had been nailed shut. As it turns out there had been a water leak in the bathroom for a number of years. The leak was in the wall. My desk was under a stairwell just across from the bathroom door. They decided that they would fix the leak and when they opened the wall toxic mold came out.
I had had a bout of Chronic Fatigue a few years before and at first thought that I was having a relapse. I just lost all of my energy as if someone had pulled the stopper out of a bathtub full of water. Everything just drained out. I was living in an apartment at the time and what I didn’t realize is that the bedroom of the apartment was also very moldy. It was on the ground floor against a greenbelt. I thought it would be a nice quiet place to live, but it turned out to be very unhealthy.
I had an environmental consultant come to look at the office space. She determined that it was a combination of mold and pesticide that was inside the wall. I had to stay at home on my couch for several months before I could have the energy to get out of the house. A naturopath came to the apartment to see me. There was little he could do as I could not take any kind of supplements or vitamins without getting sicker. I concluded that I would just have to wait until my body was able to do something with the toxins.
During this time a cat wondered onto my patio one day. I had the sliding glass door open and the cat came in and sat on my chest as I was lying on the couch. The cat came every day that I was sick. I would hold the cat with both hands as it lay on my chest. We would stay like this for hours. I was convinced that the cat was my friend Steve who had died a few years before. It was the most interesting thing to have happen during this time. The cat just had the same gentle spirit as Steve. I don’t really know if I believe in reincarnation. I think the practical side of me won’t really allow it. I do, however, believe that we do carry parts of the whole with us. Perhaps even animals do the same. What about plants? I do not know.