Celebrating MCS Improvements Part 1

How do I know I am healing?

I noticed tiny things at first...

• a few extra moments before a reaction set in
• a reaction less severe than I was used to
• a faster recovery after exposure

Then my body seemed to reach a point where the healing took on a life of it's own. A momentum had picked up and I seemed to move forward steadily.

• I could use the blender, vacuum, toaster without wearing a mask - as long as I did it quickly and left the room afterward.
• I was able to read select books again if they were not too old, new or scented.
• terpenes from grass didn't bother me much anymore (in small doses)
• I could touch paper whitened with chlorine without an instant skin reaction.
• I could walk in a pine forest without getting instantly 'stoned' from the terpenes
  
• I could eat small amounts of foods that had 'flavour' as an ingredient (many chemicals in flavour are similar to ones in fragrance due to how our sense of taste is connected to sense of smell)
• I could be around leaf mold, coffee, potted plants and more with much less reaction
  

All of the above are things that only a few years ago caused such severe reactions that I went to great lengths to avoid them.

Now I can read most books - even new, old or somewhat scented. I can even read books from the library (notorious for having picked up fragrances/smoke from people's houses).

I vacuum, use the blender, toaster and more without even thinking about it. I don't have to hold my breath, leave the room or worry about how long I vacuum for!

I go to a few restaurants, garden with no mask, have a few potted plants in my house, cut my own lawn (electric mower)... I can even have certain cut flowers from my garden inside my house. It used to be only totally scentless flowers I could tolerate but now I can even have higher VOC flowers inside.

Small exposures to dryer exhaust, wood smoke and cigarette smoke from neighbours while I am in my yard cause little or no reaction. This is such an awesome thing because I can actually use my nose as a warning system and still have time to go inside before an actual reaction happens. Before, even a few seconds was too much/too late.

When did all of this happen? I don't exactly know.
The dramatic changes happened sometime in the last year I think - the lesser ones in the year before that. Most of my healing happened so gradually and softly that I only notice things in hindsight.

I know how good it makes me feel now to notice so I've been trying to do it often.
If I had noticed more as I went along, I think I might have healed even faster due to the mind-body connection.

As I move forward, my 'normal' keeps shifting. I keep having a new normal.
It's exciting to think of how far I have come and know that one day, the way I am now will be far in the past and will seem incredibly limited!

Thoughts On Healing from MCS - 'Insurmountable Odds'

I have been thinking about people who defy the outcomes that health care professionals predict for them. People who surmount supposedly 'insurmountable' odds. These are very inspiring people and they exist in all walks of physical and mental health conditions, illnesses, disabilities etc.
I feel so much could be learned from these people!


Dr. Bernie Siegel has written a lot about how attitude, expectations, outlook and approach can dramatically alter the outcome of patients with terminal illnesses.

In one brief article here, he says, "Physicians call the most dramatic healings "spontaneous remissions." Once we have labeled them, we learn nothing from the people in whom those remissions take place. We cannot afford to ignore these remarkable successes. We are all at risk for a great many diseases, and as the world gets smaller the list of things we are exposed to grows larger. We need to learn from people who recover and people who stay healthy."

You can read the full article here:
http://www.shareguide.com/Siegel.html


Although MCS is generally not a terminal diagnosis, it is often thought to be a 'life sentence' and I feel we can learn a lot from people who defy 'death sentences'.


Many people I have spoken with know of someone who had a 'terminal' diagnosis and went on to live many years beyond the date they were 'supposed' to die.


In hindsight, I notice that my more dramatic improvements from MCS began happening shortly after I decided that I could be one of the people who recovered with MCS, who defied the 'life sentence'.
I believe that wanting to be one of those people wasn't enough for me. I had been wanting that for years. At some point, somehow, that wanting transformed into almost a knowing - a confidence that I would be able to recover. I do not have a knowing about how long this recovery will take. Perhaps that will come in time.


Since I came to have this 'knowing' about my healing, my symptoms have improved faster than I had dreamed might be possible. That confidence alone seems to have really sped up my healing which, I suppose, makes sense if I consider how stress itself is proven to negatively effect the body.
Feeling hopeless, trapped and doomed causes a massive amount of stress. It's almost like a vicious circle: One is sick and feels no hope of getting better which stresses the body so much that it truly makes it less able to get better and so it can become almost a self-fulfilling prophecy.


To an outsider, my life still looks (and is) extremely limited by MCS. But I am aware, almost every day, of how I am doing things that used to be non-options... or that I am having mild or no reactions to things that used to put me out of commission for days.


I find that the more I notice the ways in which I am much better than I used to be, the better I feel - the more hopeful, positive and confident of my body's amazing powers of healing.

I believe this state of mind actually effects my body in a positive way.
At the very least, it lessens stress. Which frees up energy for the body to put towards healing.
Stress is a big energy drain.

50-page guide: Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living

As I mentioned before, Pamela Reed Gibson's book is one I found quite helpful.
Unfortunately, due to finances, it is often not an option for people with MCS to buy it.

I just noticed that a 50 page booklet written by her can be viewed online and can be reproduced (for noncommercial use) for free without permission. This guide may be useful to share with health care providers we see who are open to learning/understanding.

Many thanks to Pamela Reed Gibson and ILRU for providing free access to the guide:

Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living

http://www.ilru.org/html/publications/bookshelf/MCS.html

The 50-page guide is written by Pamela Reed Gibson, Ph.D. published by IL NET, a cooperative National Training and Technical Assistance Project of the Independent Living Research Utilization (ILRU) Program and the National Council on Independent Living.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, freestanding medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

"This guide may be reproduced for noncommercial use without prior permission if the author and ILRU are cited."

Sensitivity To People's 'Energy', Tone etc

Many, though not all, people with MCS are also sensitive to things in addition to chemicals. Temperature, barometric pressure, sound, light, EMF etc.
I find I am also sensitive to energy from other people - both good and bad - and have found that I can react with unpleasant physical symptoms from it if it is hostile.

One of the things I have found very helpful in my healing journey has been to avoid exposures to what I think of as 'toxic' people and 'toxic energy'. By this I mean energy or people that feel toxic to me.

I feel this sensitivity can be a gift - especially for those who want to help others heal.
However, until I have learned more effective methods for shielding myself, I need to practice avoidance of 'toxic' energy in the same way I practice chemical avoidance.

The idea that some people heal from MCS is a controversial one it seems! I have received some very venomous, hostile communication in the short time since this blog has been up.

I am in the process of finding someone who can screen the comments for me and when that happens, they will be enabled again.

Thank you for your patience :-)

*update*
A friend is now moderating comments before they get to me so comments have been enabled once again.  Sorry for any delay in my replies :-)

Some Books I Have Found Helpful

I had MCS mildly for a number of years before the crash that left me unemployable and housebound in 2004.
During the first few years after the crash, it was almost impossible for me to even be in the same room as a book without reacting to the inks and the chlorine-bleached paper.
During that time, if I wanted to read, I had a home-made reading box but it was quite a pain so I rarely read.

The exception to this was Pamela Gibson's book about MCS which, to my joy, was printed with soy-based inks on chlorine-free paper! The copy I came across was already a few years old so I don't know how safe it would have been for me if brand new.

Although I didn't personally resonate with everything in it, I still found it a very helpful book.

The second edition was released in 2006. I haven't read it yet and don't know if it used the same safer printing techniques.

Pamela Gibson's book is:.

MULTIPLE CHEMICAL SENSITIVITY: A SURVIVAL GUIDE, SECOND EDITION 2006

Pamela Reed Gibson, Ph.D. from Earthrive Books

There is a link for an order form on this page: http://www.earthrivebooks.com/

*Please note*

Even if this book is printed with the same safer techniques as the first edition, there is no guarantee that an individual will not react to it. We all vary greatly in our sensitivities.

_____________________


After I had improved somewhat and was able to read again, a book I found excellent was Dr. Martin Pall's book exploring a new disease paradigm that may explain so-called 'unexplained' illnesses including MCS.

Dr. Pall's book is:

Explaining "Unexplained Illnesses": Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Post-Traumatic Stress Disorder, Gulf War Syndrome and Others

by Martin L. Pall, PhD


When I first got this book, my cognitive functioning was still suffering enough that I found it unreadable. It is very scientific and, as someone with no scientific background, I found it confusing, overwhelming and downright difficult.
However, as I have slowly healed, my cognitive functioning has also slowly improved and I am now able to read this book, albeit slowly.
The parts of most interest to me personally were the chapters on PTSD and MCS.
I found the arguments against MCS being psychosomatic really helpful and encouraging.
If I had my journey to live over again, I'd show copies of that part of the book to any of the health care professionals who implied MCS was all on one's head.
I also read with great interest the list of supplements he reviewed.

Haworth Press seems to be in the process of joining with another company and I was unable to access information on the book directly at the publisher's website.
However, it is available on Amazon.com, Amazon.ca and similar sites.

*Note*
This book is printed with normal inks and does smell.

__________________


*Please note*
I have no financial interest in either of these books.

One Woman's Description of Recovery From MCS

I felt very inspired and hopeful while reading Debra Lynn Dadd's description of her recovery and wanted to share it with you.
I encourage you to follow the link after this small quote and explore her website.
She has a free newsletter and a massive amount of valuable information available.
Please make sure to read her wise disclaimer posted on this same page. Emphasis on the final sentence is entirely mine.
Many thanks to Debra for permission to quote and link to her.

"Recovery" has several definitions. I'm referring to "restoration or return to health from sickness" (definition #3 in The American College Dictionary, 1956). I have not only regained the ability to have the life I choose, but my life today is even better than it was prior to the challenge of MCS. I am happy, productive, married, able to do anything that I choose to do, and tolerate all environments I need and want to be in. I can drive my car, shop, travel, eat in restaurants, go out with friends, and anything else that I want to do without having symptoms."

http://www.dld123.com/mcs/index.html

Intro to blog

I intend this blog to be a way for me to share about my healing journey from MCS (multiple chemical sensitivities).

When I first found out that I had this health condition/disability, almost all of the information I received led me to believe that it was a life sentence and there was no hope of healing enough to go out in the world again (I was housebound).
I used to accept this without question but, over the years, I heard stories of people with MCS who were now living a normal life and began to hope this may be possible for me one day as well.

I am now definitely on a healing journey and have had dramatic improvements.

I want to share about them here so that others can feel hope instead of just the life sentence that is accepted as the norm.

I also plan to link to other blogs or webpages of people with MCS who are healing from MCS or at the least have found ways to still live a juicy and fulfilling life despite their illness :-)

I am a slow writer so my posts will likely be intermittent.

~May your day be safe and happy~