How to find peace living with MCS

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This has been the hardest thing that I have ever been challenged with. Living with MCS is a very difficult thing to do. Life has for me taken on a whole new meaning. MCS is a very challenging illness. So many of the variables that make you sick will be out of your control. The key to remember I think is to put as many of they variables under your own control as possible then you must face the reality of your illness. For me in finding peace I found there were many steps that I had to take to be where I am with this illness.

In the first phase you are very sick and are usually going from doctor to doctor to try and find what is wrong with you. In doing so with MCS you will usually (as in my case) you wind up very lost and scared. Things are happening with your health of which you have not control. The physicians you are seeing are trying things that are time consuming and you are not getting any better, quite often worse. For me worse because of all the exposures at the Doctor's, labs and in the travel to and from these places. This was a critical phase for me. Many of times I broke down in tears wondering if they would ever figure out what was wrong with me or take me serious. You really must be strong at this point! You MUST continue to search for answers and educate yourself. If you find a doctor that is not taking you serious...find another!!! Keep trying until you find one that understands or believes that Chemical Sensitivity is real. You must remember if you don't fight for your health who will? Environmental Doctor's, Integrative Doctor's and Naturopathic Doctors are your best bets. Followed by D.O.'s and Epidemiologist's. This has been the doctors that have worked the best for me and so many others I have spoken with. Just know that mainstream medicine may not be ready for you! Keep the faith here!!
Read all that you can if you even suspect MCS or are suffering from Chronic Fatigue and Fibromyalgia. The reason I say this is that when I first got ill I had what appeared to be Chronic Fatigue. As time went on it became very apparent it was only the tip of the iceberg for me. I would say if you are experiencing Chronic Fatigue don't just accept that as you diagnosis. Work hard with your doctor and or on your own to find an answer to this unexplained fatigue. I have many books listed that I found very useful.

I found a few of the books on my list wonderful. One in particular I found was excellent, but at the time having only Chronic Fatigue this book was not about me. Later I found this book would be with me allot. Chronic Fatigue, Fibromyalgia & Environmental Illness. Also more Books to check out

It was imperative for me to find a doctor that understood MCS/EI. Once I found a doctor that knew what this was and stated me on a treatment plan I felt more peace. But I was only using supplements to try and boost the Immune System. It is very important to make your home environment as toxin free as possible.

Eliminate all toxic cleaners, perfumes, perfumed/scented products from your environment. This will include soaps, hand soaps, cleaning products, dishwashing detergent, laundry detergent, fabric softeners, hairsprays/gels, permanent markers, dry erase markers, plastic products (especially soft plastics) like shower curtain liners, plastic/rubber sink drain mats, moth balls, film canisters,

In the beginning stages of my illness I had no clue of what was to come. I basically thought I was like so many other who suffered from headaches and Sinus troubles due to allergies. I would get headaches every day. I went to the Doctor over and over. Everything seemed fine except I had allergies I was told. I would take Sudafed just about everyday to relieve the headaches. About 4 summers ago I got some sort of flu. I had terrible migraine headaches and was extremely sensitive to the light. This was the WRONG approach, but I didn't know any better.

Phase two- Once you find a doctor that is accepting of what is wrong or even remotely wrong. You may get a diagnosis of CFS (Chronic Fatigue Syndrome or MCS (Multiple Chemical Sensitivity). Don't stop there! For me I needed to know WHY! What was causing this fatigue or why am I reacting to these chemicals. That is where the research and education of yourself comes in. I found the Internet to be a HUGE storehouse of information. You must however visit reputable sites that you can trust and know the difference if it is not one you can trust. Gather information. It seems for me the truth helped to set me free. Once I was diagnosed and I had a name I knew what I was up against it made it somewhat easier. But unfortunately you will find this illness seems to be controversial or political. See Trade Secrets a Bill Moyer's special on the Chemical industry. You will find that there seems to be quite a bit of research all around MCS, but it does seem to avoid large research and a search for a cure. I am one does not need to be a "Rocket Scientist" to figure out why there seems to be companies and Doctor's standing in the way of these research projects and a search for a cure. But we must not get discouraged! We must remain hopeful. Even knowing there may never be a cure leads one down another path....leading to stage three.

Phase three- Anger and Denial- This one is a BIGGIE! Well it was for me personally. I isolated myself allot. to meditate, think and to explore my life. What it was in the past, what it is now and what I think I can make of it having a chronic illness. I have indulged in things that I enjoy like photography and animals. It was a very selfish time for me. That is however not in my character. I spent allot of time with just me. Thinking, reading and exploring. I read allot, I have spent allot of time researching this illness. Reading books, medical journals, articles and anything frankly I could get my hands on. I became very angry at WHY this is happening to innocent people and how many people are affected. It seemed to me that the Government was not doing a good enough job at protecting us. They don't seem to be stringent with the chemical companies on requiring them to do adequate testing on the health risks involved with using these chemicals that will be in common everyday things; we the general public are in contact with on a daily basis. They also are not requiring them to do testing on these chemicals being combined and what risk this places on health and the environment. They also are relaxing standards for pollution and emissions instead of tightening the standards. All of this made me so angry! One way I have dealt with that anger is to try and promote change. I have been sending letters and emails to Senators, The President, Vide President etc. I am getting very involved. In doing this I have found several avenues that help to alert you of things that need immediate attention. I have become a Cyber Activist! ( No accident I have this in Green!) We can make a difference! I receive daily alerts from Green Peace.org, ENS (Environment New Service), Naturalist Network, Ecology Fund.com, Greenpeace.org, Care2.com, . These are just some of the ways that I get involved and you can too. Follow the hyperlinks and get started today. Also learn to buy Organic and Green. These are things that we can do to help our environment, help ensure healthy practices and also make a statement about us not wanting these chemical laden products. Make sure you write to your Senators, Congress and whomever you think needs to hear "The Voice of MCS." In this phase I was very angry and even had my religious beliefs in question. I felt especially bad about that. I went into talk to the Priest at my church and he was very supporting and put my fears to rest. He helped me to understand that these feelings were very normal. But the fact that I wanted to speak with him was a wonderful sign that my faith was just fine. I do know that in this and the above phases you will lose friends and family. They will not understand you and why you cannot get well. They cannot understand why you cannot get well even after being to all these doctors. You become well aware of what they are thinking. Most or allot of them quit calling or visiting. I was very angry at this phase. I also had one really good friend open my eyes to some of what I feel happened. My friend listened to what happened. She didn't seem to disbelieve what she heard or believe. Then I quit hearing from her. One day about 6-9 months later I saw this friend. We talked for a long while. She said to me "I miss you my friend, I don't know how to be a friend anymore to you!" "I can't come see you because it will make you sick and I don't want to do that to you." I nearly broke down and cried like a baby. I thought that it was just about people giving up on you because they don't have time for a broken down friend. I learned allot that day. I learned that with this illness, it makes others uncomfortable and uneasy. They are uncertain on how to deal with you as a person and a friend. I learned that I had to overcome that and help them through it. In realizing that I have gained back three very valuable people in my life. Thank you my friend M.R! In this phase too you MUST realize that you need to talk about your illness...you need to get it out. Whether joining an online support group or helping others by education. I do both. I have let people ask me whatever they like and are comfortable with in order to help educate them. In doing this I feel better and they also seem to relate it to someone they know or maybe problems they are experiencing. I know in my heart that I am helping people...one person at a time. This is a wonderful thing for me to do as I enjoy working and being with people.

Phase four- Acceptance- This is another tuff one. Basically you must have really struggled with the last phase. For me, I had an extensive amount of anger and denial. I kept telling myself I was not that bad and this would pass. As time went by, it was pretty apparent that was not the case. I have prayed allot during this phase and the last one for God to help me understand why these things happened. In all the prayer, meditation and quiet reflection. I found peace finally. I have come to terms with this illness. I now have the attitude "If life gives you lemons, you make lemonade!" I basically have been dealt something different than most people. "It is what I choose to do with it that makes all the difference in the world." I chose to educate myself and with having done that I realized that I was not making the most ecologically sound choices I could have for myself and my family. Now I really scrutinize products for their composition and their usefulness. My eyes have been opened very wide about health, the environment, activism, politics, consumerism and the over-all bottom-line. I now know that even one person can make a huge difference if we fight for what we believe in. My morals are very strong and now I think my education is more in line with my morals. For this I owe MCS a debt of gratitude, as I have been made much stronger and much more educated. One huge helper in getting yourself prepared for acceptance is finding a new way of life. You must find new doctors, personal care products, bedding and household items. I have done huge amounts of research on this and wanted to share some of that with you. There is a huge listing or retailers that carry everything from soap, shampoo, makeup to Organic bedding and foods. I hope this listing will prove useful to you. In order for me to find peace I had to first replace all the toxic chemical products around me. So that I could at least have a safe shower or bath and also a nice safe warm and snuggly place to sleep. Those are two of the places that I find almost spiritual. They are relaxing, detoxifying times that are so very critical to your health and well-being. Please see my listing of Tolerated or not. This is a listing of items that I personally tried and gave details about my experiences with them. Once you feel like you can be safe and still function in some ways that were near and dear to you, the journey toward acceptance is much easier. Also in this phase, I cam look at my family and see how they are progressing. I saw that in this phase I could look at my husband and children and see where they were in these phases. I realized that I had to do double time to educate they and help them overcome their fears and anger and move toward the acceptance phase. It is almost like you are a teacher at this point. There are many books for the chronically ill and those who are their main caregivers and spouses. I have not personally read them, I have just received one and will be reading that one. Also there are books for children to become involved in caring and compassion of the chronically ill persons. I have included a booklist of books that I found particularly useful in trying to gain understanding of MCS. Please see Books to Check out. For a longer list of books on this subject please see Chemically Sensitive Booklist- This listing of books have not been reviewed by me. In finding your peace I have found that religion, nurturing your spirit, quiet reflection and times to pamper yourself are absolutely vital. I have included pages for natural beauty care recipes. You can have someone deliver natural products or order online ingredients to make these delightful chemical free body care products to help nurture your spirit. The pages include hair, body, nail and skin care recipes. These pages also include product safety and cosmetic information pages and references.

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