Multiple Chemical Sensitivities

[Deborah]

Well, I think I've pretty much read every post on this wonderful website, but so far, I haven't run across the answer to one of my important questions.

I am the Canary in the Coalmine. People are giving themselves cancers by using dangerous products filled with chemicals they can't even pronounce on their bodies, and people like me are red flashing lights saying, "THINK!"

I have Multiple Chemical Sensitivities. What this means is that my immune system reacts violently to some common chemicals that do not (on the surface) bother other people. One of the things that really hurts me is certain perfumes. Remember, if you can smell something, you are ingesting it. The molecules are literally entering your body. Where most people have a favorable reaction or none at all, my body goes into emergency mode, believing those molecules of perfume to be an invader and it responds by giving me swollen, stiff, aching joints, brain fog, a host of other symptoms, and a migraine that lasts about 3 days. Once my body reacts, it has difficulty calming down, and sometimes symptoms go on for literally months. One such symptom that I can't seem to get rid of is a chronic tendonitis in my wrists which makes it impossible to pull, tug, or grasp with a normal strength and a constant burning pain.

Because of this, I have been unemployed for the past 6 months. I can not be around perfumes, air fresheners, fabric softeners (which are the worst) and don't use makeup, hairspray, or any scents of any type.

One reason for my pilgrimage is to discover inside myself what I might do for a living - because at this point filing for Disability is the only option I see available for me. When I can control my environment I feel fine and to look at me you wouldn't think I'm disabled at all. But it's deceiving..

Anyway.. my question is this. Do I need to take a mask? Do people pile on perfumes and spray air freshners in the refugios?

For me, sweaty bodies and farty bathrooms are much more pleasant that sprays and perfumes. I've yet to get a migraine from natural human odors.

In some of the posts, I see that it might be possible to take a mat and sleep on the floor in another room - away from all the people. True?

What about sleeping on a mat out of doors (with no tent) during September/October?

Thanks for any answers you can give me.

 

[Ellen O'Connor]

Deborah, I'm very sympathetic to your plight, a neighbor friend has the same problem and she spent 2 years trying to get the school district she works in (art teacher) to recognize her condition and set her up in a properly ventilated room. Last year i walked the Camino, Pamplona to Leon and, though not sensitive like you, i was aware of no sprays, etc.. in the refugios i stayed at. As far as the pilgrams go, there is no one who loves perfumes and scented creams more than i, but there was absolutely NO question of bringing anything like that along with me to weigh my pack down even one ounce, and i think that's pretty true all round. There were occasional smells of vicks rub and even sometimes oils or the like scented with rose water or tea tree oil, (are you bothered by naturally produced scents?) But apart from the sun screen everyone wears (which is while walking out in the open, so not cloying) I encountered no moments of "Glade Fresh Air" or "where's that perfume coming from??" Certainly you could smell shampoo in the shower rooms, but maybe you could shower after everyone was through -? Hope that was of some help.
I think you should at least try it and see how it goes. Good luck!!
Ellen O'Connor

 

[Deborah]

Thanks!

Many Thanks Ellen for your reply!

GREEN scents such as Vicks, Camphors, Eucalyptus, Wintergreen don't seem to bother me. Pine is fine if it is natural. In fact, sometimes if I'm having a reaction, those scents can actually help.

Florals, unfortunately, give me a raging migraine. I love rose oil, but am unable to get near it. Lavendar is fine, so is lemon. But citronella is harmful. It's really bizarre. Even natural essential oils can trigger a response if they're the "wrong" ones.

Resinous incense that you burn on a charcoal (like the Church uses) does not affect me but joss sticks and those cone incenses are killer!

Most horrible of all is FEBREEZE! It's just like spraying RAID on a bug when that stuff is around me. I literally cannot function for 4 days after an exposure to it. Horrible, it doesn't get rid of smells, like people think, it just masks them and I've heard it actually has a chemical that can deaden a person's sense of smell. For me, within 30 seconds of being around it, I begin having difficulties breathing and the headache begins. It's just horrible. Room fresheners and especially those plug in ones are also really terrible for people with MCS. As are scented fabric softeners and body lotions.

I wish people would pay more attention to what goes in and on their bodies. What people put on their skin, their largest organ, horrifies me! Working in oncology really was a wake-up call for me regarding cosmetics. Do you know that women who dye their hair black have a much larger incidence of uterine cancer? No kidding...

Anyway.. I won't preach, but I'm sure glad that those offensive products are most likely too heavy to carry.. YAY! ::doing a little happy dance!:::

 

[Ellen O'Connor]

Wow, Deborah. That was fascinating. I'm going to tell my black hair died sister in law (with the weird pap smears) that info. I hope you will find your journey fulfilling and joyful (I've yet to speak with one who hasn't) I'm certainly planning to go back. You said you wished to focus on what you might do for a living now on your walk, yet you mention working in an oncology lab -isn't that a reasonably 'chem.free' environment? Not like working in a department store or Yankee Candle gift shop anyway..
My husband (who wears mens cologne) gets a pain in the side of his head like a spike a la migraine when i wear Victoria Secret body lotion (i don't spend money on these things, but people give them to me sometimes.) I agree that fabreeze is weirdly evil.
Glad the 'greens' don't bother you, because the more i thought about it, the more i realized those aromatic ache-relievers were, after all, pretty prevalent on the path. -None of the girly stuff though.
All the best, i'd love to know how you make out.
Ellen

 

[sillydoll]

Chemicals on the Camino

Hi Debbie,
It must be awful living with the sensitivities you have. I feel like a fraud in comparison but I am an asthmatic and most things that come out of a pressured can set me off, not to mention pollens, seeds, dust, fungus etc.
Walking on the camino in spring can be hard on the sinuses! The wildflowers are spectacular - and full of pollens - one walks through acres and acres of beuatifully green asparagus, wheat, vineyards and fruit orchards. The cherries in June are delicious. Walking through Burgos to the albergue was a real pain, not only the extra 8kms but the fluff from the trees was unbelievable! It was like snow falling. Walking on the meseta with the grasses, heather, erica and other scrub flowers all shedding fine seeds gave me a stuffy nose and a tight chest. 2004 was particularly dry (we had 3 rainy days in 6 weeks) and I had to use a nose spray every day.
If you have any allergies besides the chemicals, it might be an idea to take a mask. Not for the albergues, but whilst walking.
Be safe, take care.
Big hug,

 

[Deborah]

well

Well, I worked on the floor in oncology and the chemo they gave to the patients made me deathly ill. I had to quit - hospitals are horribly unhealthy places to be.

Sil, I do have a mask I carry everywhere. It's got a charcoal filter. Lightweight enough to take along, it's made by another woman with MCS. I keep it "just in case" I go to the grocery store or get stuck someplace and can't get out quick.

I'm sorry about your allergies. So far, nothing like that bothers me. Mostly chemicals for me. Although the yellow pine pollen here in Portland does give me a headache on really windy days when it gets whipped up into the air. But luckily, that's it.

I wonder what the Camino will be like in September/October? Do you think there will be fruits like grapes for the picking? Blackberries? YUM! Are there bears on the trail? YIKES!~

I can't wait. I'm so excited I don't know how I'm going to make it through the next few months.

I got my "passport" from the American Pilgrims of the Camino in SFO yesterday along with a nice magazine. I'm studying my Spanish and Portuguese so I'll be able to communicate. And I'm starting to walk a mile or two every other day to begin to break in.

WooHOO! I'm really GOING!

 

[AndyF]

Hi Deborah
Did you complete your camino
:?:
I hope everything went well
I read with interest about the MCS - a colleague of mine suspects he may be suffering from MCS but is not having much joy with the doctors :?
Can I ask if you can actually get MCS diagnosed with a doctor - I see you are in the States so perhaps the procedure is different over there :?:

Buen Camino

Andy F

 

[marktqm]

Hola Deborah,

Be forewarned: In a couple of refugios I've been to, I noticed the slight smell of freshly applied chlorine bleach on the floors e.g. albergue de peregrinos in Burgos. Are you allergic to that?

I forgot the other one.

Mark

 

[ehaldenb]

CATS in the albergues

Are there any refugios or albergues that have CATS? I love cats, but I'm deathly allergic to them. I sympathize with your sensitivities...it's so strange that something so small can affect us big humans! I hope there are no cats! I would be laid up for a day after contact with one.

 

[Anonymous]

Definitely bleach, no felines, yet. Once I stopped at an albergue where the hospitalero was smoking a cigar, parading it all over the albergue. Luckily, I was close to another refugio. Needless to say, I left, am also allergic to many things, so have to watch out for all that. A law was passed in Spain, I think a couple of years ago, banning smoking in public places. Like everywhere, there r people that comply, others that do not. I've found that most Spaniards support the law. However, I've also been to places (bars/restaurants, etc.) where nicotine smell has been awful and I have had to walk out. Best, xm 8)

 

[Ronald Boivin]

Well, I think I've pretty much read every post on this wonderful website, but so far, I haven't run across the answer to one of my important questions.

I am the Canary in the Coalmine. People are giving themselves cancers by using dangerous products filled with chemicals they can't even pronounce on their bodies, and people like me are red flashing lights saying, "THINK!"

I have Multiple Chemical Sensitivities. What this means is that my immune system reacts violently to some common chemicals that do not (on the surface) bother other people. One of the things that really hurts me is certain perfumes. Remember, if you can smell something, you are ingesting it. The molecules are literally entering your body. Where most people have a favorable reaction or none at all, my body goes into emergency mode, believing those molecules of perfume to be an invader and it responds by giving me swollen, stiff, aching joints, brain fog, a host of other symptoms, and a migraine that lasts about 3 days. Once my body reacts, it has difficulty calming down, and sometimes symptoms go on for literally months. One such symptom that I can't seem to get rid of is a chronic tendonitis in my wrists which makes it impossible to pull, tug, or grasp with a normal strength and a constant burning pain.

Because of this, I have been unemployed for the past 6 months. I can not be around perfumes, air fresheners, fabric softeners (which are the worst) and don't use makeup, hairspray, or any scents of any type.

One reason for my pilgrimage is to discover inside myself what I might do for a living - because at this point filing for Disability is the only option I see available for me. When I can control my environment I feel fine and to look at me you wouldn't think I'm disabled at all. But it's deceiving..

Anyway.. my question is this. Do I need to take a mask? Do people pile on perfumes and spray air freshners in the refugios?

For me, sweaty bodies and farty bathrooms are much more pleasant that sprays and perfumes. I've yet to get a migraine from natural human odors.

In some of the posts, I see that it might be possible to take a mat and sleep on the floor in another room - away from all the people. True?

What about sleeping on a mat out of doors (with no tent) during September/October?

Thanks for any answers you can give me.

This was my everyday experience in the 1999s until I received treatments using energy Psychology energy medicine snd Chinese medicine. Now I have ZERO reactions ! Your situation sounds dire but there is effective treatment outside regular medicine. Good luck

 

[Theatregal]

Just thought I'd mention that though chemical sensitivity remains a real concern (I also have bad reactions depending on the product), the OP is from 2006 and Deborah was last seen in 2008.

 

[Anniesantiago]

Well Hello ME!
How funny to read this, then realize after reading the entire thread that this was ME posting way back in 2006 before my first Camino! I came back from that walk feeling absolutely human again! It was very healing. My specialist had given me the option of chemical chelation or long distance walking and after researching and seeing so many people with liver and kidney damage from the chemical chelation, I chose the Camino.

Since then, I've walked more than 20 times, trying to go once and sometimes twice each year.

My MCS is much more manageable now, mostly because I've learned to recognize my triggers immediately and get the hell out of the area FAST when they pop up. The worst for me still are people's perfumes/colognes, FEBREZE, and that horrendous cleaning product they use on the floors in Spain that leave my eyes watering and my head pounding. I think it's called Fabuloso or something like that. Nasty toxic stuff! I've been known to use every towel in the bathroom to "clean" it off the floor so I can stay (in privates of course).

Anyway, this made me laugh out loud because I began answering "Deborah," then went back to see it was from 2006, then read the entire thread and realized I was the OP.

Made my morning!

 

[henrythedog]

Well Hello ME!
How funny to read this, then realize after reading the entire thread that this was ME posting way back in 2006 before my first Camino! I came back from that walk feeling absolutely human again! It was very healing. My specialist had given me the option of chemical chelation or long distance walking and after researching and seeing so many people with liver and kidney damage from the chemical chelation, I chose the Camino.

Since then, I've walked more than 20 times, trying to go once and sometimes twice each year.

My MCS is much more manageable now, mostly because I've learned to recognize my triggers immediately and get the hell out of the area FAST when they pop up. The worst for me still are people's perfumes/colognes, FEBREZE, and that horrendous cleaning product they use on the floors in Spain that leave my eyes watering and my head pounding. I think it's called Fabuloso or something like that. Nasty toxic stuff! I've been known to use every towel in the bathroom to "clean" it off the floor so I can stay (in privates of course).

Anyway, this made me laugh out loud because I began answering "Deborah," then went back to see it was from 2006, then read the entire thread and realized I was the OP.

Made my morning!

I hadn’t noticed the dates of the original posts and replies - but I was already thinking ‘I’m sure that Anniesantiago has referred to a similar issue, I should refer the OP to her’.

.. so no point in that, then.

 

[Theatregal]

The worst for me still are people's perfumes/colognes, FEBREZE,

Yes!! Me too Annie or... Deborah

FEBREZE

 

[Smallest_Sparrow]

Well Hello ME!
How funny to read this, then realize after reading the entire thread that this was ME posting way back in 2006 before my first Camino! I came back from that walk feeling absolutely human again! It was very healing. My specialist had given me the option of chemical chelation or long distance walking and after researching and seeing so many people with liver and kidney damage from the chemical chelation, I chose the Camino.

Since then, I've walked more than 20 times, trying to go once and sometimes twice each year.

My MCS is much more manageable now, mostly because I've learned to recognize my triggers immediately and get the hell out of the area FAST when they pop up. The worst for me still are people's perfumes/colognes, FEBREZE, and that horrendous cleaning product they use on the floors in Spain that leave my eyes watering and my head pounding. I think it's called Fabuloso or something like that. Nasty toxic stuff! I've been known to use every towel in the bathroom to "clean" it off the floor so I can stay (in privates of course).

Anyway, this made me laugh out loud because I began answering "Deborah," then went back to see it was from 2006, then read the entire thread and realized I was the OP.

Made my morning!

I admit I thought it odd that Deborah asked if she had to bring a mask