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Canaries in the Coal Mine: Multiple Chemical Sensitivities, Myth Vs. Reality

Photo by Majd Mohabek via Flickr creative commons

Photo by Majd Mohabek via Flickr creative commons

When people find out that I am sensitive to the chemicals in everyday products, I almost invariably find that they believe one or more of the many myths surrounding MCS. First, what is MCS?  I’m constantly surprised by the fact that almost no one knows what I’m talking about when I use that acronym.  MCS stands for Multiple Chemical Sensitivity.  The Chemical Sensitivity Foundation defines it this way:

Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS.

Now that you know what it is, I imagine some of you are probably thinking, “Ooooh, I think I know somebody with that problem”.  With a lot of help from some of my fellow MCS sufferers, I have identified some of the more common myths associated with the disorder:

Myth #1:  People who say they have MCS really have chemophobia (fear of chemicals), anxiety, or depression and probably need psychiatric help (medication).

Most people who have MCS didn’t have any idea that everyday chemicals could be dangerous or cause life-long problems until they became ill.  Many didn’t find out what was making them ill for a long time, going from doctor to doctor looking for a solution.  Much of the time, it is not until a person begins to avoid chemicals that they begin to see the connection between their symptoms and the chemicals they had been exposed to.   It is possible that some people with MCS develop chemophobia, but it’s usually long after they have had many bouts with chemical-induced illness.

Some people with MCS do suffer from depression, but evidence suggests that the depression usually occurs after the onset of the illness, which would also suggest that it often results from the misery and social isolation of chemical sensitivity, and not the other way around.

Also, MCS causes physical illness.  It is known that physical illness is very often accompanied by mental illness.  The brain is a physical organ which, like any other organ, can be affected by toxins and disease processes.  Many of the toxicants which make us ill are known neurotoxins, which could also explain much of the anxiety and depression experienced by people with MCS.

Because of liver-function abnormalities often seen in people with MCS and a general hypersensitivity to many different chemicals, psychiatric medications are often not well-tolerated and are most definitely not a cure-all solution to this problem.

Myth #2:  People with MCS should just take antihistamines or allergy shots so they can live more normally and not have to avoid contact with common chemicals.

Standard allergy treatments often fail with MCS.  That is because the disease mechanism appears to be different from what happens in allergic illness.  In a true allergic reaction, the immune system begins to tag harmless substances as harmful invaders.  That sets off all the classic symptoms of allergies: sneezing, runny nose, coughing, hives, etc.  Many people do react in that way to chemicals, in which case allergy treatment may be beneficial.  But many others react in ways that are not typical of an allergic reaction.  Often, neurological symptoms such as pain, dizziness, brain fog, slurred speech, and tremors  are dominant.  These types of reactions will often not respond to common treatments for allergies.

Myth #3:  Common personal care and household products are mostly harmless and people with MCS are just hysterical.

Environmental Working Group would beg to differ.  They have created several databases including the Skin Deep Database which exposes not only the ingredients of common products, but also their potential toxicity to humans.  Many of the most commonly used household and personal care products listed received an F on a scale of A to F, F being a “fail”, or most dangerous. – Test your knowledge of cosmetics safety: 8 myths debunked

Myth #4:  People with chemical sensitivities just have a strong sense of smell and are bothered by odors. 

People with MCS can often react to odorless chemicals, so it’s not about the smell.

“… It should be clear … that chemicals in MCS are not acting on the classic olfactory receptors (15,16), but rather are acting as toxicants. This is opposite many published but undocumented claims that MCS is a response to odors. There is additional evidence arguing against the view that MCS is a reaction to odors. MCS sufferers who are acosmic, having no sense of smell, people who have intense nasal congestion and people whose nasal epithelia have been blocked off with nose clips can all be highly chemically sensitive (1,4). This does not necessarily mean that MCS never impacts the olfactory system. It simply means that MCS is not primarily an olfactory response.”

~ Martin L. Pall

Myth #5:  MCS is a rare disorder.

 Possibly up to 25% (depending on the study you read) of people in the US report symptoms of chemical sensitivity.  It’s likely that most of the statistics on MCS prevalence are shots in the dark, as many people who suffer with MCS go undiagnosed.  Many others who are sensitive to chemicals simply don’t know what it is that’s making them ill. – MCS statistics

Myth #6:  MCS is controversial. 

Dr. Ann McCampbell, in her article Multiple Chemical Sensitivities Under Siege, had this to say about it:

“Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it – the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS.”

The controversy surrounding MCS is not real.  It is manufactured by chemical industry leaders with a profit-driven agenda.

Myth #6:  “If I can’t smell it, it’s not there.”

If you put it on, ever, it’s there.  Often we cannot smell our own odor because of something called olfactory fatigue .

Myth #7:  The dose makes the poison.

Many people assume that “just a little won’t hurt”.  But check out what Philip and Alice Shabecoff had to say about it in their book, Poisoned for Profit: How Toxins are Making Our Children Chronically Ill:

“Chemicals capable of disrupting endocrine hormones… are now understood to be a different kind of toxin.  None of them follow “the dose makes the poison” dictum.  Even at tiny doses they can alter the way the immune and endocrine systems operate, leaving the body vulnerable to sickness or developmental damage.  Pthalates, bisphenal-A, dioxins, flame retardants, and some pesticides as well as long-banned chemicals persisting in the environment, such as DDT, are major hormone disruptors.”

Incidentally, pthalates are found in many fragrances, which also means that it’s found in many if not most fragranced products.

Myth #8:  MCS is just an excuse to “opt out of life”.

I have spoken to and read about many people who have MCS, and not one has ever seemed happy about their isolation.  In fact, what I hear most is despair approaching desperation.  Nobody wants to be shut out of life.

Myth #9:  People with MCS behave in contradictory ways.  Sometimes they say they react and sometimes they seem fine.  This must mean they are not telling the truth about their symptoms.

Symptoms of chemical sensitivity can wax and wane depending what level of health the sufferer is experiencing at the time.  When a person with MCS is feeling particularly strong, perhaps because of their efforts to heal their body, they may not have such obvious reactions to chemicals.  On the other hand, if the person is feeling run-down, it’s possible that their reactions will be more severe and long-lasting.  Things that affect sensitivity levels include stress, sleep, nutrition, and whether or not they have been able to breathe clean air in recent days.

Or…maybe they don’t want to tell you every time they start feeling ill because they are tired of be told that it’s all in their head.

Myth #10:  People with MCS just need to stop thinking about chemicals and symptoms and they will be fine.

It’s true that thoughts can be very powerful.  But as I mentioned before, most people with MCS didn’t even know that they were being made ill by chemicals at first.  Obviously, thinking about chemicals could not have played a role in the etiology of their illness if they didn’t even know to think about them in the first place.

Myth # 11:  “Normal” people shouldn’t have to worry about the products they use if there are “safe” areas set aside for those with sensitivities. 

It might seem like a good idea to provide an area set aside for people with chemical sensitivities at social events such as religious services, conferences, conventions, and concerts, but there are a couple of problems with it.  We all would like to participate fully on social occasions.  Segregation does not feel good.  It’s frustrating and disheartening.  Also segregating people with MCS away from others in a group tends to give people a false sense of having done the right thing.  They often feel that because those with sensitivities have their “safe” area, that it won’t matter how much fragrance they use or what the building is cleaned with.   It is very difficult to keep a small area of a building completely free of scent when the rest of the building is full of it. This is often due to common ventilation systems and the opening and closing of doors. It’s similar to the absurdity of setting aside non-smoking sections in restaurants.  The non-smoking section may be slightly less noxious (or not), but it will never be completely free of the presence of smoke or tobacco residues.

Myth # 12:  If my scents were making people ill, they would tell me.

People with MCS have often encountered so much skepticism and ridicule from family and friends about their symptoms that they may give up trying to talk about it.  We sometimes find ourselves having to choose between educating the public about the reality of MCS and keeping our friends.  Some of us suffer in silence. Others choose to try to quietly escape a toxic situation without making a scene.

Some cases of MCS are so severe that a reaction goes far beyond what might be considered typical.  It is possible for a reaction to cause so much brain fog that the sufferer finds it difficult to articulate thoughts and may not be able to tell you that you are making them sick.  Some reactions can include hearing loss, temporary blindness, and may even progress to the point where the sufferer actually physically collapses.  This is extremely frightening for the sufferer and for those standing by.

Myths and Facts About Chemical Sensitivity

Myth # 13:  Everyone should not have to change just to help a small minority.

The American Academy of Environmental Medicine had this to say in their Position Paper on Chemical Sensitivity:

It is believed that these chemically vulnerable modern-day “canaries in a coal mine” have an important lesson to teach us, if we would but listen – namely, that the hyperreactivity manifested by those with chemical sensitivity is an early warning sign of the alarming potential for eventual poisoning of our entire population by the numerous man-made chemical pollutants to which we are being continuously exposed. In other words, the fact that chemically sensitive individuals demonstrate exquisite vulnerability to toxic injury should serve to alert us to the disturbing reality that our modern industrial society, despite its many advantages, may ultimately compromise the health of us all.

As noted earlier, MCS is not rare.  And many of the people who are suffering from it are unaware of what it is that is making them ill, so the actual number of sufferers is likely to be much higher than the numbers that are published.  Also, many of the chemicals to which people are reacting are known human toxicants, many of them carcinogens.  We would all do well to avoid them.

It can be much easier to change our cleaning, washing, and beauty routines than many people assume.  Check out EWG Consumer Guides for help in finding non-toxic products.

Myth # 14:  People with MCS seem to get sick from every little thing.  They are over-reacting and need to loosen up.

Toxic chemicals truly are ubiquitous in the modern world.  They are nearly impossible to escape.  People with MCS are not getting sick from “every little thing”, they are getting sick from human toxicants. Often, symptoms are so severe that they cannot simply “lighten up”.  They have to protect themselves from the consequences of toxic exposure. It sometimes happens that people with MCS will go on a trip to the ocean or mountains, breath fresh, clean air, and begin to feel almost 100% better.  What does that indicate about the nature of this disorder?  What does it indicate about our society that we should have to travel many miles away from population centers in order to experience normal health?

Conclusion

The truth is that MCS is a scary, cruel, and relentless thief of health, relationships, careers, and even lives.  Yes, people really have died from it.  It should be taken as seriously as any other chronic, possibly fatal illness.  But it’s not.  And most of that seems to have to do with the greed and political meddling of powerful corporations.  It’s the story of Big Tobacco all over again.  But this time it’s worse.  Imagine what it would have been like if tobacco companies had found a way to weasel their cancer causing ingredients into so many commonly used products that it was nearly impossible to avoid them without educating yourself.  That is what we have now with artificial fragrances and other toxic chemical ingredients.

Some people with MCS have been able to get better.  But many others, in spite of persistent efforts and lots of money spent on healthcare, still suffer and must strictly avoid chemicals.  But whether they are able to recover their health or not, most of them will never be the same.  It’s like going through the looking glass into a bizarre world where nothing is as it should be.  They will never forget what they have experienced, or the people in this world who are still suffering.  To those people, I dedicate this post.  And I pray for their recovery and for the world to awaken to this disaster.

Additional Reading:

 Amputated Lives: Coping with Chemical Sensitivity

Multiple Chemical Sensitivity, A Mysterious Malady, Awake magazine

When Chemicals Make You Sick

Helping Those With MCS

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Multiple Chemical Sensitivity: Toxicological and Sensitivity Mechanisms

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I Can See Clearly Now

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I see now that this place is beautiful.  After 18 years, I see.

I was so homesick when I moved here as a young bride.  I wanted my mom.  I wanted pine trees and yellow bells and buttercups.  I wanted lakes to swim in and hills to sled down.  I just wanted to go home.

The more trapped I felt, the uglier this place became.  Ugly and mean.  Smelly and dirty.  Poisonous.  My ruin.  My hatred magnified every crime, bad smell, or dusty wind a thousand-fold.  I loathed this place.  How many times did I say it?

This place was not my ruin.  My hatred for it was. Those dark ugly feelings about my home. The ground I walk on. The earth that feeds me.  I hated that which nourished my body and could have nourished my soul.  I hated it so much that my wish to leave became a desperation, a frenzy.  And when there were no jobs and the sale of our house fell through, when staying became the only option, I disintegrated.  I fell completely apart at the seams.  My grief for my old dream of that other home was profound.  Eighteen years of striving towards my jail break had come to nothing.

That’s what it took to bust the tough outer coating of my heart-seed so that it could put tender root tendrils down into this soil.  I knew only love could save me.  The hatred finally melted and a veil was lifted.  Finally, I could see:

The lilacs and apple blossoms are heavenly.  The water on the canal sparkles, jewel-like in the sun.  The mallards and the rabbits, the robins and the meadowlarks are enchanting. The smell of sage on a rainy day, how the light and shadows play on the distant hills, the smell of river trees in the summer, and the distant snowy peaks make this place beautiful.

None of God’s creation deserves to be hated.  I may hate what man does to it, but I cannot hate the ground, the grass, the birds, the water.  All nature is capable of healing, and there is beauty everywhere for those with eyes to see and a heart to understand.

Hills and Valleys

Photo by Kristin Kokkersvold via Flicker Creative Commons

Photo by Kristin Kokkersvold via Flicker Creative Commons

The rollercoaster ride that is my life just got a lot wilder. A week and a half ago I took the plunge. I finally stopped taking Temazepam, which I had tapered very slowly over the course of 2 years.  The dose of medication I was taking when I quit was miniscule: 1/4 of a milligram.  Some nights I’m sure that even though I dutifully took my dose, the drop of water I consumed actually contained no medication.  It was time to quit this nonsense.  You would think that after a two-year turtle-taper down to a tiny pinch of powder, finally coming off would be anticlimactic. That’s what I thought.  Apparently I was wrong.

My body knows something is missing.  My muscles tighten around my head and neck like they are trying to perform a facelift without surgery.  Sometimes I feel like my head is full of helium, that it’s about to launch itself into the stratosphere.  And with the helium-head comes a feeling of altered perception you would have to experience to understand.  Some people say it’s like a bad acid trip.  I wouldn’t know, as I’ve never taken acid.  It really bothers me, though, that I know how that feels.

And the pain!  In an earlier post I wrote that I felt that I had been abused and beaten in my benzo prison.  The pain is why.  Searing nerve pain that darts across my chest and makes me afraid to breath.  A tight ache in my jaw that never goes away.  And hatchet-head.  That’s my nickname for the migraines.

I don’t like revisiting these symptoms.  It scares me.

So, I cope with techniques that I learned long ago when I suffered much more than I do now.  I use the good old affirmations, the same ones that pulled me out of my darkness back then.  I stretch and walk and meditate.  I breath.  I stop the mosquito-like negative thoughts that threaten to pull me into a pit of mental suffering.  I love on my kids, my sweet pup, and my husband.  I write and write, sometimes fast and furious, sometimes slowly and thoughtfully.  I take deep gulps of lilac scented spring air.  Yes, I will be fine.

And sometimes I really am fine.  Sometimes I’m on the crest of a hill instead of in a dark valley.  Sometimes I can’t help but grin, tears of joy making tracks down my cheeks.  I’m free!  It’s Spring and I have my whole drug-free life ahead of me.  It will be a good one, I know.

My Story

How I Slew the Benzo Beast and What I Learned in the Process

Metamorphosis

 

 

 

Metamorphosis

Free to Fly by Sid Mosdell via Flickr Creative Commons

Free to Fly by Sid Mosdell via Flickr Creative Commons

So much of my identity used to hang on the fact that I did everything gently, naturally.  I prevented health problems, I did not medicate them.

It was quite a slap in the face, then, to find myself on addictive medications – twice.  The first time they were prescribed, I was desperate and ignorant.  The last time I was desperate, but not ignorant.  I nevertheless did not want to take those pills; I was forced.  I feel violated.  I can never be the same person I was before the benzos.  They took things from me – my innocence, my reputation, relationships and my health.

I am so happy to finally be free.  But I feel like I was just let out of prison where I was raped and beaten.  Where they played games with my mind to drive me crazy.  Where they tortured me with sleep deprivation and isolation.  But because it was an invisible prison, nobody understands that that is why I’ve changed.  That is what caused the crying and the rages, the outrageous fears and the crushing exhaustion.  That was why.

I will never be the same person again.  But I can’t say that I want to be.  I’ve grown.  I’ve learned things that I might not have been able to learn any other way.  This is what suffering has taught me:

*God really does love me.

*There are some things worse than death.

*Quick relief comes with a hefty price tag.

*My mind is incredibly powerful, and I am stronger than I thought.

*Be grateful for all my blessings, both small and great.

*Being right and being understood is not as important as being a friend.

*As long as I concern myself first with what God thinks, it does not matter what people think.

*Never be afraid to share my gifts.  Maybe God gave them to me for a reason.

 

If I can remember those lessons, I believe there are amazing things ahead.  I’m a butterfly just emerged from its chrysalis, wings still shriveled and wet.  Soon, I will fly.

 

My Story

How I Slew the Benzo Beast and What I Learned in the Process

Gratitude Heals

Self Betrayal

 

How I Slew the Benzo Beast and What I Learned in the Process

Freedom by Matheus Lotero

Freedom by Matheus Lotero

The nightmare is over.  I have won my battle with the beast.  I took my last dose of Temazepam, a benzodiazepine sleeping medication, on Sunday, April 13th, 2014.  I will not be going back.

In case you are one of the many people who don’t know what benzodiazepines are, I need only say two words: Valium and Xanax.  Most people know what those are.  Some are even aware of the fact that they are both notoriously addictive and incredibly difficult to come off of.  All benzodiazepines work in generally the same way, and all are highly addictive including my beast, Temazepam.  (Benzodiazepine Withdrawal Symptoms)

I spoke a little of my struggle with Temazepam in my story.  I want to share some of my journal entries from the past two years to show you where I’ve been and how much has changed since I first began to taper from my medication.

The Early Days

I started writing in my journal while in the hospital for depression.  I spent a couple of weeks recovering from the hospital stay and allowing myself to sleep on the full dose of medication.  I soon realized, however, that the medication was making me very ill.  I would wake up in the mornings and feel like I had the flu.  By the afternoon I was a bundle of nerves, although so tired I could barely get out of bed.  I knew I had to taper, and I wanted off as quickly as possible.  So I made a few mistakes in the beginning.  Please forgive the incoherence of some of these entries.  I was in deep misery and did not have all my faculties.

March 17, 2012

Tomorrow I get out of the hospital.  I am absolutely grief-stricken that I was not helped here.  I’m now on a benzo again and terribly frightened.  This is what it took to convince them that drugs don’t work for me. A miserable week getting sick on drug after drug.  My hell has only just begun.

March 26, 2012, 30 mgs

I’m so sad for what my family has lost, what more they will lose when I get off this drug.  Tonight I start my taper.  I have no idea what to expect.  I’m trying to stay positive, but I’m starting to realize it might take much longer than I thought if I don’t want to be horrendously ill.  Patience will be vital, even lifesaving in this case.

 March 30, 2012, 28 mgs

Doc wants me to rapid taper which would basically feel like cold turkey…Today was very bad.  I’m frightened.  Withdrawal hasn’t let up much and it’s already near bedtime.  I should not have made that last cut.  It was much too fast a taper plan.

April 1, 2012, 28 mgs

Extreme suffering today despite holding my dose.  2 hours sleep last night.  Severe depression/anxiety, burning muscles, nausea, sore, swollen mouth and tongue.  Pain and enervation everywhere.

April 4, 2012, 28 mgs

Not more than 2 hours sleep last night…Been a horrid day.  Tapering too fast was a huge mistake.  I keep going back and forth between severe anxiety and crushingly painful depression.  Jenny came today at just the right time.  Jehovah always knows when we’ve had enough.

April 14, 2012, 28 mgs

MISERY!  Throat is gagging, body burning.  Only 4 hours sleep.  Kids coming soon and I won’t be able to love on them…I’m in so much misery.  Throat and stomach feel sandpapered.  Chest is so tight.  Coughing and gagging.  Head pain was outrageous last night.  So screwed…Burning all over body.  Head pressure, blurry vision.  Feels like I drank acid.  Can’t stop twitching even though I’m dang tired.

 

That was the result of trying to come off my medication too quickly.  2 mgs in 2 days.  That would have had me off within two months, and probably right back in the hospital. Although I understood that tapering was the reason for my misery, I still wanted off.  I didn’t even consider staying on the medication.  I slowed my taper rate way down to a doable 10% of my current dose per month.  I had also heard that spreading out my dose throughout the day would help me to taper with less suffering.  It took me a while to muster the courage to do it, as I was fearful that taking any from my night-time dose would cause even more sleep problems.  As it turned out, just the opposite was the case.  Spreading my dose out was one of the best things I did during the whole taper.

 April 26, 2012, 27.5 mgs

I started taking med during the morning yesterday.  I did it again today and will take another 2 mgs this afternoon.  I don’t like the feeling, but it’s better than intense withdrawal.  I slept okay last night despite being short 2 1/2 mgs of med.  I’m doing okay this morning.  Just slight nausea and wooziness.  I hope this helps me come down at a more reasonable rate…Some numbness and anxiety creeping.  Ear pain, some jaw pain.  Not too bad.  Getting some laundry done and did some dishes.  Cooking lunch now.

May 15, 2012, 25.5 mgs

Woke up feeling really good today…It’s been a relatively great day.  I got a lot of laundry and housework done, spent some time in the sun, never felt any anxiety or depression and physical symptoms are somewhat milder.

May 17, 2012

Just kept falling asleep in the morning.  I felt pretty good today.  I have some energy, no depression.  Tiny bit of anxiety, but I try not to think too much.

 

My menstrual cycle seemed to make things much worse.  I usually had a few good days during the month like the ones above.  But I usually took a dive right before my period.  I notice now that I did a lot of pep talking when I felt that bad.  I think it really helped me to heal.

May 19, 2012, 25 mgs

The cottonwoods are blooming and I’m crying remembering the day last year when James and I drove out to Granger to the dinosaur park and to show him my mail route.  The cottonwoods were shedding so much it seemed like it was snowing.  It was beautiful and I was so strong and vibrant.  I will be that me again.

June 16, 2012, 22 mgs

I was up at 4:00, too hungry to go back to sleep so I had to get up and eat.  I finally got maybe another hour of sleep after that.  I had to say my affirmations for a long time before I could get out of bed.  So many scary intrusive thoughts.  I will have to work hard at staying in the moment today.

The pain in my ear, neck and throat is bad tonight.  It’s so tense.  It’s been a challenge to keep from worrying.  It’s all just a sign my brain is trying to readjust and heal.  I will heal.  I am getting better.  Remember the woman who detoxed from her medication and was seizing and had every other conceivable symptom.  She was reinstated and slow tapered.  She only had mild symptoms the whole taper and remained relatively well after.  She felt completely healed within one year of her last dose.  That will be me.  And even if not, I accept all that my body must do to heal itself.  I will help it as far as I can and I will not fear.   There is nothing to fear with Jehovah on my side.

 

The Long Hard Slog

By August, I was feeling much better, although I was still experiencing steep hills and valleys in my level of suffering.  I had continuously used positive thinking, journaling, affirmations, and certain relaxation techniques to help me through the withdrawals, and those things really began to make a difference.

August 1, 2012, 20 mgs

“God gave us, not a spirit of cowardice, but that of power and of love, and of soundness of mind.” – 2 Timothy 1:7

I’ve been feeling sort of invincible lately, like I can handle anything.  Maybe if I’m super careful and slow with my taper my suffering will remain minimal.  Today was very good.  I took a long walk this morning on the canal road.  There were some ripe blackberries and the wind was nice and cool.  I didn’t even feel overly tired after, and it was a long walk.

You can heal from any kind of mental illness.  I will not go crazy.  I will keep getting better and better.

I had to continually adjust my taper rate.  If I started to get into a continual pattern of crashing and then having to hold the taper, I knew it was time to slow it down.  It was not hard to do, as I was diluting my medication in carefully measured water and making tiny daily cuts.  All I needed to do in order to slow my rate was to make smaller cuts or increase the intervals between cuts.

September 20, 2012, 17.50 mgs

I’ve officially decided to cut my taper rate in half.  So now instead of crashing and holding all the time, I’ll just steadily take 1/2 ml every other day instead of every day.

I’m functional enough now to get meals, keep the house reasonably clean, pick up the boys after school and see to their homework.  I still get frightened and depressed.  And I’m tired to death of this never-ending taper, but I feel fortunate to be sleeping every night and be mentally and emotionally present for the boys.

Keeping my mind on positive things has been absolutely essential.  My emotions have been so fragile throughout this taper that even the slightest bit of negativity or scary news would send my into a tailspin.

November 15, 2012, 14.75 mgs

I felt really stable today – emotionally anyway.  Until I read a disturbing article about Candida.  I hate that word so much – the other C word.  I need to stay away from information about infections and disorders, it does me no good.  Positivity is life.

November 19, 2012

I just destroyed my mood by tormenting myself with tragic You Tube videos.  I don’t know what possessed me.  Then, right in the midst of that, my son handed me a letter from school about a boy from his class who has cancer.  Good way to destroy an evening.  They are not us.  We are fine.  We have nothing to fear because not even death can defeat us if we remain faithful.  I am so terribly raw right now.

 

I believe it was because of my extreme sensitivity that I continually came to understand important things about life during the past two years.  I also became very angry about certain things.   One day, I went looking for a place to walk by the river, which turned out to be very difficult.  I finally did find a place, although I found out later that I had been trespassing.  I had a wonderful walk, but it also made me think about the things that make me angry about how the earth is being ruined.

December 6, 2012

I hate what this world has become.  How despicable that the very thing that Jehovah carefully designed as our perfect home of delight and beauty has been made into a toxic wasteland.  This valley should be teeming with birds and coyotes, elk and cougars, beaver and porcupine.  It should be covered in sage and bunchgrass with desert lupine, sunflowers, phlox, desert parsley, and astragalus.  the river should run free and clear and be full of trout and bass that wouldn’t make you sick to eat it.

I feel like the whole world is a minefield of dangerous chemicals from which there is no escape.  I feel as helpless as an Oklahoma farm wife watching with dread as another black dust storm rolls across the prairie, slamming into the house and filthing everything in its path including the small and vulnerable lungs of her children.  There is no shutting it out.  Life must go on even if pneumonia is the result.

The extreme greed and utter disregard for other humans displayed by the mega-corporations that are responsible for destroying so much of the earth, including our valley, is stupefying.  It makes me sick that human beings are capable of it.

 

At one point in my taper, I took a huge nosedive.  I still am not sure why it happened.  I guess maybe I tapered too quickly.  But I was frightened.  I thought I would never be able to get completely off the pills.

June 3, 2013, 6.75 mgs

I discovered on Saturday night that I really haven’t tapered anything at all since 7.5 mgs.  I hadn’t accounted for evaporation.  I’m so sick.  Saturday and Sunday I  started using a covered jar and dividing up my dose ahead of time, which effectively caused me to drop from 7.5 to 6.75 mgs in one night.  I don’t know what I thought was going to happen – that my body would just forgive me and behave accordingly?  Did I think I could ignore the evaporation thing and maybe it would be okay?  Well it’s not.

June 5, 2013 6.75 mgs

This too shall pass!  I will follow the program (The Effortless Sleep Method) and hold until I’m stable again.  I sleep so well, there is no reason to fear.  I’ve done amazingly well throughout this entire taper.  If I can overcome what I’ve already been through, I think I can weather a difficult week like this…

I need to make allowances for the possibility of feeling bad.  I’ve been holding myself to a very high standard: total functionality.  And I’ve mostly achieved it.  But I’m feeling extreme fear right now about letting my family down again – extreme.  The fear would go if I could just let go of the absolute need to feel stable at all times.  ACCEPTANCE is the key to the least amount of suffering.  My boys are not babies anymore, they can do things for themselves. It’s good for them to feel the need to care for themselves and others.

I simply tapered a little too quickly and now my system is very hypersensitive.  It will pass if I hold and accept whatever symptoms come to me.

I’m going back to 7 mgs…

I struggled along like that for another week and a half before I got brave a tried a homeopathic remedy for the insomnia.  I had stopped taking all supplements because of my hypersensitivity, and I was afraid to try anything.  But I did it, and that’s what saved the taper, I believe.

June 16, 2013

I’m so depressed I don’t even know what to write.  I feel like it’s the end of life as I knew it, bad as it was.  It was at least tolerable.  And most importantly, I was able to be a halfway decent mom.  Poor **** keeps begging me to go camping as if nothing could ever be fun without me.  It’s breaking my heart.

I’m almost always nauseated and everything I eat goes right through me.  I can’t seem to tolerate food in any form.

I’m pretty sure I will be taking a dose of Phosphorous tomorrow morning.

June 17, 2013

I feel like my adrenals and stomach are blasted all to #$%^&.  I can’t seem to eat any meat without reacting.  It’s Monday morning and I have to get brave and take my remedy or I might never get off the poison.  (took Phosphorous 30c)

2:30

The brain fog isn’t so bad anymore and I don’t feel like dying, that’s certainly progress.  I’ve been able to take an interest in things.  I’m very weak and heavy and get head rushes when I get up, but if the mental symptoms improve, I’m happy.

June 18, 2013

Nausea: gone

Diarrhea: much improved

Mood: volatile, but much improved

Energy: better, but on the edge of exhaustion

A few days later I had to take another dose at a much higher potency, and it helped immensely.  I have since relied on Phosphorous to help me through the rest of my taper, and I believe I owe much of my stability to it.

I was not the only one who had a bad couple of years.  I lost 4 friends and two Grandmothers in death.  Most of them to cancer.  I usually call cancer the “C word” because I’ve always had such a terrible fear of it.  Well, I had to face that fear.  I had to look it right in the face and stare it down.  I had to love my Grandma, who had lung cancer, right up until that terrible beast took her life.  And I did it.  I think I loved her well.  I hope she felt that I did.

August 24, 2013, 6 mgs

Grandma died last night.

August 25, 2013

I was very, very tired and depressed this morning.  Suppressed grief.  I’m frightened at the intensity of it.  I was afraid to acknowledge it.  It made me sick.  I read an article about grief and how trying to appear strong is not healthy.  A woman who was a doctor commented that she would let herself cry at the very beginning, but after that she would push it all down in an attempt to remain strong for others.  It made her sick.  So I deliberately took my Grandma’s picture and forced myself to look at it and remember.  And sure enough, the torrent of violent emotions surfaced and nearly overwhelmed me.  But once I recovered I did feel better.  It is a relief, but it is also extremely exhausting.

This is what I wrote for my Grandma in the days following her death:   Pioneer Shoes

Two months later my other Grandma, who had been suffering from the advanced stages of Alzheimer’s, and who I had been very close to all my life, died quite suddenly from pneumonia.  I don’t have what I wrote during the week that I stayed with my mother after it happened.  This is what I wrote after I came home:

October 20, 2013, 4 mgs

“Our problems are no match for Jehovah.  Our extremities are his opportunities.” – Member of Governing Body of Jehovah’s Witnesses, Gilead Graduation

This has been one of the worst and best weeks of my life.  Worst because Grandma died and I miss her terribly, and because my mother is devastated.  Best because Jehovah gave me the strength of Samson so I would be able to do the seemingly impossible.  I stayed with mom all week and took care of her in spite of my own illness and sleep deprivation, endured large amounts of chemicals because of our numerous visitors and other reasons, and actually made it through all of Grandma’s memorial and reception dinner without leaving once…and I made it.  I’m okay.  Just understandably exhausted and very sad.

October 21, 2013 4 mgs

I don’t have any Grandmas.  Not even one…I’m so terribly tired.  I’m getting by on pure holy spirit I think.

And as if all that were not enough, five days later my dog died.

October 25, 2013 4 mgs

Elsie got hit and died today.  If I wasn’t living this I would never believe the amount of heartache and drama that have been my life for the past two years.  It’s actually surreal.  I have so much to cry about that half the time I don’t know which thing I’m grieving, or if it’s all of it.  It’s been feeling like something has been pressing on my chest and my insides are raw.  And sometimes I’m completely numb and in dumb despair.  Sometimes I even forget and start to enjoy myself, but then another storm hits.  Nothing helps. Nothing chases away the dull, heavy ache.  Oh Jehovah God help me!

The Home Stretch

I started writing on this blog, Sound as a Crystal, in November 2013, the month after my Grandma died.  It has helped me heal in so many ways.  During the past six months, I have experienced more healing than I had in all the year and a half before it.  I don’t know how much of that has to do with the self expression and how much has to do with the fact that I’ve been taking less and less medication, but I’m happy.

Sometime in early November I started to practice oil pulling.  I had already been using my remedy, Phosphorous, on a regular basis.  I had also been using bentonite clay packs to relieve some of my inflammation.  These practices seemed to have a very beneficial effect.

November 11, 2013, 3.5 mgs

I feel good.  It’s a little window.  I didn’t expect ever to feel good while detoxing, but behold!  It does work.  I am making some progress.  I continue to OP (oil pull) every day as well as use clay poultices.  This morning I took an Epsom salt bath.  I expected to crash from that at some point, but I did not.

In spite of all the good things I was doing for myself, I continued to struggle with negative thinking at times.  I had and still have terrible chemical sensitivities which prevented me from doing many things.  No parties.  No malls.  Even driving has been a challenge.  All this caused a lot of social tension.  (Read more:  Behind the Mask)

December 12, 2013, 2.75 mgs

I’m so terribly self-conscious now, and am suffering from such low self-esteem that I just have to chalk it up to benzos.  It’s so extreme.  It’s not me.  I know one of the symptoms listed for benzo withdrawal is low self-esteem.  I just don’t remember feeling this way at any time before I took any pills.  I think the heightened sensitivity unmasks fears and vulnerabilities that we usually keep well-guarded.  And the more this happens the lower goes my sense of self-worth because looking at myself through someone else’s eyes I see a neurotic.  I hate that word – neurotic.  It’s a dismissive and derogatory word.  Saying “she’s just neurotic” pretty much devalues anything she might have to say.  Aldous Huxley felt that neuroticism is a normal, healthy reaction to a world gone mad.  Maybe I agree, but I still hate the word.

This Spring has been wonderful.  I started taking daily walks again, which has strengthened me.  Many of my most troubling symptoms have fallen away. And now I am off my medication.  The thing I have strived after for two long years is accomplished.  I am now free to heal without the medication continually pushing back against my efforts.  My most recent effort to heal involves the use of the Gupta Program, which is designed to help those with CFS, Fibromyalgia, and MCS to heal.  It seems to be helping me already, as the next journal entry will illustrate:

April 14, 2014, .25 mgs

Yesterday was amazing.  I went to my parents anniversary party.  Once people started arriving I started to get really nervous and shaky.  But I took my niece for a walk by the lake for a while and when we got back, I was fine.  I was fine for the rest of the evening – no shakes or headache.  It was amazing!  It was surreal!  I got to really enjoy myself in a big group of friends.

I was teary and so very thankful yesterday.  I could hardly believe I had made it.

April 15, 2014

I’m officially medication free as of last night.  I’ve waited two long, terrible years for this.  I can finally move forward and heal more quickly and completely – no poison mucking me up.

So, if you’ve bravely slogged your way to the end of this, congratulations.  And if you are in a situation similar to the one I have been in, take courage.  We do heal.  The body and brain are amazingly resilient.  But we have to pay attention when it speaks.  We have to help it along a little.  Thoughts matter.  They matter so much.  Love God.  Love yourself.  Love everyone.  Be good to the earth and it’s creatures.  You will heal too.

Simplicity of Wellness

 

Photo under Creative Commons 2.0 license

 

 

I’m in the Fog

Photo by Armando Sotoca

Photo by Armando Sotoca

I’ve struggled all week with an absolute inability to write.  Well, not exactly absolute.  I can always journal.  But for every blog post I’ve written that was well received, I feel a need to up the ante and write something better.  I’ve reached critical mass now and seem to have overloaded my brain circuits, which is not hard to do given the fact that I’m still recovering from benzodiazepine addiction and chemical sensitivity.  So I figured, why not write about it?

I know some of my readers know just what I’m talking about.  So many illnesses result in this terrible, foggy feeling in the head.  This inability to grasp simple things or to express any complex thought our emotion in words.  This lack of inspiration.

It’s a tragic symptom.  What is more terrible than to lose the ability to think clearly?  What makes us us?  Is it not, in part, our thoughts and how we express them?

I used to be smart.  My thoughts were crystal clear and seemed lightning fast.  Now I feel that my mind plods along like an aging donkey.   It’s terribly ironic that I would have begun publishing my writing to a blog just at the time in my life when my mental faculties are at their weakest.  It’s the syndrome that’s eating at my brain that made me want to do it.  It gave me a terrible need to express myself, to find others like me.  I just wish that both the impulse to tell my story and the ability to think clearly enough to do it had coincided.

I know that sometime in the near future, I will get my brain back and this blog will bloom.  But until then, forgive my occasional lapses into profound states of mental stasis.

 

Photo Under Creative Commons License