Wednesday, May 12, 2010

For My MCS Peeps: This Is Progress!

People who have never experienced a chemical injury or some kind of health breakdown that causes a person to get Multiple Chemical Sensitivites may find this post a little weird... So be for-warned, let your judgments and confusion take a nap while ya keep on reading.
For those of you who have MCS, ya might have to let your judgments go too, cause I am about to talk about the most hotly debated and taboo topic in the MCS crowd - and that is about healing & possibly being cured. Yeah, i said the "C" word, and now I am gonna tell you what I really think....

Some of us who developed MCS know exactly what happened, you might have been exposed to chemical in your workplace and then watched your health take a spiral into a housebound hell, you may have been renovating your home and didn't recover, you may have been a gulf war veteran who was lied to until recently about pills you were administered, or a 911 victim...... or maybe an average person like me who was exposed to various things over time and happen to have an auto immune disease that caused enough damage to make the normal body functions take a dive 6 feet under.
However you got to the stage of MCS, no matter how hard you had to fight to be understood and never truly were by everyone... there is also this point of acceptance and letting go - letting the label of being "sensitive" be as big a deal as having brown hair.

Over the years my symptoms of MCS kinda took up and down dives, with being only generally sick when going into K-mart (who isn't sick in that place?), or when exposed directly to fresh paint, or loud amounts of perfume. These things bordered on normal, and didn't stop me from at least hanging out at thrift stores. But nearly 5 years ago I got pregnant, and very sick - when I lost the baby my mild MCS turned into raging impossible to deal with every smell makes me wanna pass out and kill people so I must hide in the woods MCS. It was so intolerable that I could no longer drive without having seizures, I could not stand for my X boyfriend to come home from the store and get near me with his smelly clothes, I could not hang out with or visit any other humans, or go anywhere in public. After nearly a year of this kind of hell-ish reclusive life, I ventured out....
I didn't go sticking my head inside of paint cans or huff glue, but I decided if the world was going to kill me, then Fuck It! Let it kill me while I am living my life and doing what I want --->
I started off slow and made small goals. Each time I reached a small goal (like buy a lottery ticket at a gas station 2 blocks away), I would set the bar higher and further till I was working on a more functional level. 4 years later.... look at the picture at the top of this post, that is me AT A PARTY that included alot of people, bon fire, some people smoking ect....

Two things I noticed over these years :::::

1. MCS is not in your head, people react to nasty shit in our environment as a natural part of our body's function.
2. I (my body) was so used to reacting, there was some auto-anxiety involved... not 'in my head' but anxiety that was learned and out of control. Anxiety bad enough to be confused - like was it a symptom or anxiety causes me discomfort?

The reason I bring this up is cause there are a few things I have done over the years that I believe have helped me improve. I am not cured, but since I am always on a steady upswing and will never give up I thought I would just jot down the things I felt were helpful to me - no matter how controversial they may be (and knowing everyone's body will need their own personal combo of things to heal!)
1. I got on the macrobiotic diet. I did not eat bad before that, in fact I have eaten all organic & whole foods long before health problems, but this diet has some really helpful ways to keep your foods appropriate for your ailments, the seasons, your body tempature, and healing in general. Over time I branched out and added back in some whole foods not strictly on this diet, but ones that help improve my energy and give me a greater variety of nutrients.

2. I got outta my head. This one will undoubtedly make some people with MCS upset cause it's not a head disease, but with any health problems sometimes the best thing we can do is get the hec outta our own way and STOP for da' love of gawd thinking about sickness, what causes sickness, how we got sick, being mad we got sick, blaming the world we got sick... ect (you know the thoughts I am talking about!) I had to start thinking about life and my dreams, and not about "sickness" stopping my life.

3. Risks. I am not recommending anyone with MCS do anything to put themselves in harms way, but for me I had to take some risks to find out what my real limits were. With all the other helpful things i was doing for my health (clean house, clean diet, homeopathic detox, being nice to myself) there would come a time when new limits needed to be tested if I was to ever be able to branch out and do anything beyond my own backyard. Each time I took a successful risk (no matter how many were unsuccessful) I was able to do that much more and that did wonders for my mental health too.

4. Homoepathic/Medicinal stuff. I tried about a billion things, but the only stuff I used that worked for helping de-tox my body in a gentle way were homeopathic pills for kids (Newton brand) and eating shittake mushrooms (takes out heavy metal and junk real gentle, easy and tastes good too!) I don't like taking pills, of any kind and I did best when I stopped taking all the pills recommended to me and just took the one homeopathic or nothing at all.

5. I got a therapist! Hell yeah I did, because being sick is not easy to deal with and it turned out I learned amazing skills and coping methods that reduced tons of stress in my life and I only had to go for a short period of time before i learned to support myself emotionally and forgive and live again. What I learned in therapy about how to deal with being sick, rolled over into every relationship for the better.

6. Exercise!! No matter what, even if it's hard and makes ya fatigued. I did this even when bed ridden and at my worst, getting the body moving and the blood circulating is your ticket to wellness.

7. Nice Home Environment. It never needed to be the Taj Mahal for MCS'ers, just had to not be freshly painted or super disgusting - I moved around more times then I can count on two hands and generally my house plants cleaned the air good enough each time. The really important part for me was not living right in a city (too much pollution), to have fresh air outside, to open my windows, to walk in the woods, to grow my own food, and have animals around me.

8. Brain re-training. I KNOW, this is the one people in the MCS community have been either seething with hate over, praising, arguing, or banning... but I tried it. Let me just tell ya'll, i didn't even watch all the CD's for the Gupta Program but only up until the specific exercise to re-train your brain and I started doing the exercise immediately everyday. Did i do it like 20 times a day like he suggests? NO way maybe like once a day... nor did i do any of his meditations and all those suggestions on how to breathe cause I already had enough self help like that in my bag of tricks. But when I had a majorly bad thought about being sick, or bad symptoms I did the exercise and then moved on. Brain re-training helped me, I can't put my finger on it but once i started thinking in a positive direction and got my brain outta auto-sick mind my bravery and ability to do things doubled up ten fold times 100!
This method has helped me tons with my newest challenge, and that is I am trying to learn to drive a car again after 5 years of being home bound! (See pic above!)

I remember when I could not breathe in a small enclosed space with any other human unless they were totally decontaminated, chem free .... but this picture below is me and my dad recently in my bathroom hanging a mirror together and the only reason my face looks like it does is cause he was calling the mirror a "f-en bastard" and scaring me with his perfectionism. :)
I am not in perfect health, I still have trouble breathing in certain places, I still feel ill to smell the fragrance detergents, I still know I am not reliable or well enough to go out and get a regular job .... BUT i am much more functional. Functional enough to begin enjoying my life again and I wanted to put this out into the world - for those with MCS or any disease do not give up, ever! The body always is working towards healing itself, the body always wants to get better and so do you... do not give up on the miracle of healing - even if it's slow and takes many years. Just know none of ya'll are alone, I am over here at my little cabin in the woods believing everyday that we all can be healthy - no matter what anyone says!



mara said...

Leslie this makes me so happy and sad at the same time. I am sad that you have to deal with such a shitty thing. I'm very proud to know someone as awesome as you that has dealt with something this sucky so well. I feel a little guilty thinking of all the bizarre chemicals that I willingly put in my body recreationally and I don't have to deal wiuth what you do. ANYWAY. I am excited and hopeful that eventually you will also be able to one day use conventional art supplies again, or maybe develope stuff that is as good and less chemical...anyway LOVE TO LOVE YOU!!!!

Erik said...


I got knocked on my ass badly last week, still recovering ... this aint easy :(

Wild Canary said...

Me, too, Eric! Thanks, Leslie, for sharing this...I want to do a punch list of what worked for me. Some controversial. I haven't looked at the Gupta thing yet, but I have believed in brAIN repatterning, or whatever you want to call it in Hs when our youth group helped repattern a child who wasn't supposed to do anything in life. hundreds of people helped...after a long time, he smiled. I watched stroke victims over the years use exercises and mind games to reprogram their brains. I didn't remember when my mind was messed up with pesticides, but somehow, something moved me in that direction. And one of my fav quotes is 'whatever is true and lovely and good, if there is any virtue, think on that...' I have watched your focus...and it is healing. It helps me to see the beauty and the detail.
I also like that you life right now looks like the drawing you made a short while ago.

Anonymous said...

I love this post. I sometimes don't understand your nature posts, but this one I completely relate to.

You're so right- our body wants to heal.

Lately my saving grace has been to down tablespoonsful of sea salt throughout the day. I can't believe I'm writing this, but I smelled perfume this morning on someone and it smelled GOOD. I am not kidding. I can't even believe I just wrote that. I feel like I wrote I Love the Devil or something. Sea salt, in large quantities (at my doctor's urging), seems to be helping my MCS hugely.

Gratuitous said...

And all this time I thought we'd have to change our evil ways to come to you... but hell if this keeps up you just might come to us! And via motor-carriage no less! Will wonders never cease?

Susie Collins said...

Leslie, I love this post! I'm so happy to see you doing so well.

Thank you much for guestblogging on The Canary Report, you have inspired many to never give up on the road to health. It's odd seeing you drive a car! (Love that photo!) But I'm telling you, I am happy to see you driving, it makes me feel much better about you being out in the middle of nowhere in your beautiful little Luck Cabin.

Thank you for all you do and all you inspire in us! xoxo

Liberty said...

this is SO AWESOME Leslie!
So many of the things you shared are things that have helped me to improve/heal on my MCS journey as well.
I know some are controversial but my hope is that people can eventually start looking at the people who are getting better and noticing common threads of what worked for them!
I'm sure that way back when, if someone suggested a sauna could help MCS, or buffered vitamin C, people probably were skeptical of that too. But in time, those have come to be accepted due to how many people persisted in saying they were helped by them.
The fact that some people do get better tells me, personally, that getting better is possible. Once I met enough who had healed, I decided I wanted that for myself!
From your list, numbers 2, 3 and 8 have been the most powerful healers. I've only done the Gupta Programme a little bit but so much of what I was doing already that I call 'Shifting Focus' is similar and had been working wonders for me so I trust it is an effective technique (though not necessarily easy at all).

I'm so happy that you are experiencing this healing Leslie - and that you are going to be driving! How awesome is that! yay!

Leslie's Gone Oko said...

Thanks to all of ya'll for the supportive comments! YAY! xoxox

I love reading too, about ways other people with MCS are healing themselves and coping.

Amestress ----> that is what happens to me if i smell Brute (which i don't even know if they make anymore), cause my first boyfriend & first kiss & first teenage love wore the hell outta some brute cologne and i could never hate the smell - it'd take me back to simple love & pleasures.

♣☆★☀ Hotaru ღ ♥ ♥ ❤ said...

:) i'm late to read your post but thanks as usual leslie , good on ya!