A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
My Multiple Chemical Sensitivity Story
I realised the other day that I had never really written about my experiences with multiple chemical sensitivity (MCS). So I thought today I'd give a (relatively!) brief account of my journey through developing MCS, living with it at its most severe, to the point where I am now largely free from symptoms, save for the odd twitch.
I had been ill since the age of 11 and was diagnosed with ME/CFS at age 12. Having read a lot about my illness during my late teens I was aware that a large number of ME/CFS patients also suffer from allergies and MCS. I had developed hayfever a few years after being diagnosed with ME/CFS so thought it was a very real possibility that I could develop chemical sensitivities at some point.
My fears were realised in late 2002 when I was 23 years old. Ironically, I believe the straw that broke the camel's back so to speak was a general anaesthetic I was given during a catheter insertion at an integrative medicine hospital in Mexico. I spent 3 weeks there receiving treatment for ME/CFS having flown over from my home in the UK.
I was still living with my parents and sister at this time and following my return to the UK I started noticing a strange collection of symptoms every time either my mum or sister wore perfume. I would become dizzy, disorientated, weak (especially a weak in the knees sensation), my heart would pound and then as time wore on following expsoure I would develop headaches and generally ache all over. This would later progress to the stage where I felt like I had severe flu in the days after an exposure with terrible aching and nausea etc.
In the ensuing months the things that triggered this reaction increased in number, slowly at first and then more quickly. My dad is a smoker and his cigarette smoke was the next thing that began to trigger symptoms after perfume. This was quickly followed by nail polish remover (no, not mine!), deoderants, and fabric softener. For a while the outdoors were my sanctuary but soon I began to experience symptoms simply walking past people who were wearing deoderant or perfume. Soon after I began to get ill from vehicle exhaust.
After a few months of this rapidly increasing sensitisation I became ill after exposure to minute amounts of pretty much every source of volatile organic compounds (VOCs) in the house as well as those encountered outside. Initially I could easily tell what was triggering my symptoms from the smell but as things progressed I was sensitive to so many things and at such small amounts that I often didn't know what the trigger was.
Now, to those individuals who persist with the notion that MCS sufferers have simply developed a psychological aversion to chemical odours I'd like to point something out. As all of this was happening to me I was understandably stressed, and yes I did become anxious in anticipation of being exposed to chemicals but this was because I became physically ill when I was! My anxiety had a basis in reality. Chemicals made me ill so I was anxious about them and began to avoid them, just as you know not to touch a hot pan cos it will cause pain. At least for me the symptoms of MCS associated with a triggering substance were clearly distinct from symptoms of anxiety or even panic. I will go so far as to say that on occassion what I initially thought was an MCS reaction was just the symptoms of anxiety when I thought I had encountered a triggering substance. In these instances it quickly became apparent when this was the case however as the symptoms didn't progress in the same way. To suggest that MCS sufferers can't distinguish between symptoms of anxiety and something which is completely new and unique (an MCS reaction) is simply ignorance.
Around 6 months after my initial development of sensitivity to perfume things had become unbearable. Rather than having the occasional reaction to various things and then recovering I was now constantly in great distress and getting worse and worse as every chemical in the house was adding to the severity of my symptoms. I was in a state of total despair and panic not knowing what to do. It wasn't just horrible for me either, it was extremely stressful for my whole family. I think they felt I was blaming them for just going about their normal lives. There's no way they could understand how much I was suffering.
Fortunately my parents owned a flat/apartment which they rented out and to my great relief it became available just as I was at the limit of what I could bare. I moved into the flat in June 2003 and immediately felt better with no perfume, cigarette smoke or any other chemical triggers to set off and worsen my symptoms. I had my safe haven.
I did discover however that I couldn't go in the kitchen without it triggering my symptoms. I removed all the household chemical products and anything else that could potentially be a source of VOCs. I never used the gas stove. Still I became sick whenever I went in the kitchen. To this day I'm not sure what the trigger was.
At this time I discovered a website that sold face masks with carbon filters which it said would filter out any VOCs in the air. The company is Called I Can Breathe and I highly recommend their masks to any MCS sufferer. On receiving my first mask I was delighted to find they worked brilliantly. Wearing the mask I was able to go in the kitchen without a problem and also I found, I was able to be around people wearing perfume or in any environment with triggers present and I never became ill. As a result I spent around 3 years wearing a face mask whenever I went in the kitcken, whenever I went outside, and whenever I was in the company of other people. Being a rather shy and self-concious person this was one hell of an exercise in character development! Sure enough after a while I learned to ignore the stares and everything else. Thankfully it turned out I had some really good friends who didn't care about the mask...in fact it provided them with a source of endless new nicknames for me. I was happy just to be socialising again!
I don't think people really have any comprehension of what us MCS sufferers have to give up because of your illness. We are essentially prisoners in our own bodies and in our own homes. Not by choice as some suggest but because we have no other option, other than wearing what looks like a surgeon's mask! For the 3 years my MCS was at its worst I couldn't do a LOT of things from the seemingly small such as smelling the air outside (the mask blocks that as well as the chemicals!) to the soul crushing things such as being unable to have a relationship. As I said, I was 23 when I developed MCS, I wanted nothing more at that time than to be out metting girls....sadly an impossibility.
At first I simply avoided using any chemical products, I figured better safe than sorry and who was going to smell me wearing no deoderant anyway as I was hardly ever around people. Slowly After researching on the internet and reading various books, as well as experimenting for myself, I discovered safe alternatives to the fragranced petrochemical based products that are so ubiquitous in our modern society. Sticking with the deoderant example I found products based on mineral salts which absorb the sweat and odour extremely effectively. They are also not expensive and last a long time. They contain no volatile chemicals or fragrances at all so don't trigger symptoms. There are equally effective and affordable alternatives for cleaning the home, washing clothes and everything else.
After being in my parents flat for about 9 months I applied for council housing and on the basis of my illness they put me to the top of the list and I was found a flat within 3 months. I consider myself extremely lucky not only that my parents were able to offer me somewhere safe right away but also that the authorities were so understanding. I have no doubt that the majority of MCS sufferers have a much harder time. I also count myself lucky that I was young and had not yet settled down and had a family. I can't imagine the strain MCS puts of relationships with spouses and kids, it must be a living nightmare every day.
Since I first developed MCS I had been searching not just for safe products but also for effective treatments to reverse my condition. I was determined that there was no way I was going to spend the rest of my life (which could have been 60 years+) a prisoner in my own home.
From reading the available medical research on MCS (of which there is a surprisingly large amount) and from my symptoms and other observations I became convinced that MCS is a neurological illness or toxic injury to the brain, rather than an allergic type immune reaction to chemicals as is often suggested. The neurological hypothesis much better explaisn the symptoms and the spreading phenomena (rapidly becoming sensitive to more and more chemicals).
Dr. Mark Donohoe, an Australian GP who now specializes in environmental medicine, believes this to be the case and has written a great book on MCS entitled 'Killing Us Softly' which is available online for free at http://web.mac.com/doctormark/DoctorMark/KUS.html
Sure enough I found that treatments which affected brain function were the ones that brought the most relief. So much so in fact that I now no longer react to anything! I attribute my recovery mainly to treatment of underactive thyroid and adrenal function with T3 thyroid hormone, DHEA and licorice to raise low cortisol levels. All of these have a profound effect on brain function and rapidly improved my MCS. As I said at the start I only have the occasional twinge nowadays. I am sure avoiding triggers diligently for a number of years also played a big part in my recovery and I still avoid VOCs as much as possible now I have learned my lesson in the harshest way possible!
I hope this gives at least a bit of hope to those of you currently struggling with the nightmare of MCS. It is possibe to replace every product you used to use with safe alternatives and not deprive yourself of things. It is also possible to conquer MCS and regain your health no matter what you may have been told elsewhere.
Talking about your struggles can also be therapeutic so please do so on this site if you want to. You can reply to this blog using the comments section below or write your own blog after you register with the site (free and no confidential information required).
If you'd like to talk to me privately about MCS or anything else please email me from the Contact Us page.