Hallo Diana

Just read your articles about your son and MCS. Poor you – poor him. But such spirit! You have given me much encouragement today. Thank you.


I too have MCS – and also COPD (I wonder whether my MCS has been brought on by prescription drugs, or vice versa …the two things seem so related to me now) – anyway, I suffer – A LOT! But, there is hope. And I am not going to give up fighting this.


I am 54 – I got sick like this only at 50 – on my birthday in fact – we went, with friends to an open-air music festival – which was FULL of thousands of people smoking (and I have NEVER smoked one cigarette in my life, nor has my husband or kids). Well, that’s what started it.


Plus the even worse WOOD SMOKE which fills the air where we live here in a little-known valley on the French border (we came here from the UK – we’re British - in 2001 – for my husband’s work – he’s a biologist).


Well, my wheezing and coughing – and the taste in my moth and throat much of the time - is truly terrible. But, I must say I am better than before – we now have air purifiers in each room (HEPA filters are best), I have taped up most of the windows and we only “air” the house in the middle of the night and on breezy days …..I wear a face mask most of the time – even in doors. Sometimes my husband does too – just to get from the car to our front door – because our neighbour’s smoke is so foul (they use wood for EVERYTHING – their chimney is like a furnace. But it meets all the regulations, so we can do nothing – and there are others like it all around us on this estate. And the cleaning chemicals there use here horrify us, for EVERYTHING! The air is always “scented” – we can smell people’s deodorants as they walk past us – even out in the countryside – and it is NOT nice. Why the Swiss are not all dead by now, I cannot understand, surely these products are toxic?


We never knew about all this back in UK – there we lived quite simply and we had natural gas heating and just electricity for the hot water and so on. So, when I first got ill here, we installed GAS CH in the house – which helped – but, of course, did not stop our neighbours from polluting the air WE breathe, and it was at a great cost because gas CH is feared here. (a very old fashioned place). We have concluded that the folks here have stronger lungs than us English. Although we have recently heard that this particular valley (near France) is well known for chronic bronchitis, diabetes and heart disease (all smoke related?) – and almost EVERYONE chain-smokes cigarettes and it is allowed in most public places – including restaurants (we are NOT in the EU – but some districts are now moving towards new anti-smoking policies – thank goodness).


And the MCS? Well, that just hits me sometimes like nothing on earth – perfumes, sprays, deodorants – you name it. I have to be VERY careful about even opening the front door – because of what my neighbours might be up to. This summer they were treating their woodwork (external) with something bad – oh, did I suffer. The pulse shoots up, my throat is raw, I get dizzy and confused, my muscles “go”, my head hurts, my words get jumbled up, I feel sick – I can even pass out. And of course, there is the breathing problem too. And yet, hardly anyone seems to believe me. My doctor has seen what happens – when I visited after he had disinfected his clinic. Now he knows better! And then there was the time I was taken very ill at the airport, you can imagine, and more.

I have discovered that many of the chemicals in our modern world (things like formaldehyde and toluene) are given off by wood smoke too … so it is not surprising that both get me down. Diesel fumes and paint are bad too. And then there is the stuff the farmers put on the fields – and the “disinfectant” (?) scented air-spray in the supermarkets (yes, the supermarkets) that sticks to all the packaged foods and veg. – we have to wash it off rapidly as soon as my dear husband gets home with the groceries, otherwise.


Here’s the good news - our solution is to move house – we have finally – after 4 years of searching – found an old inn about 15 mins out of town and at a higher altitude (we sold up in UK to come here, you see – and purchased our present house on what seemed to be a very nice, quiet residential estate. Little did we know – it was a warm, fresh Spring when we bought the house and moved in. The lady next-door said it would need “lots of airing”. Indeed so – pity we can never get any good air though!


Well, the new place, the old Inn, needs lots of renovation and changes to suit me – it has not been lived in properly for almost 10 years – and so we are being very careful about the work we have done on it. There are NO immediate neighbours – WONDERFUL – but it is beside a main road and summer traffic will be bad – and there is sometimes wood-smoke from the farm lower down the valley. I know it won’t be perfect – but it is the best we can do. I keep telling myself to hold on a bit longer – to keep fighting this. One step at a time. And that I am still in control – and we MCS sufferers know an ENORMOUS amount MORE about this than the medical world. I simply refuse to go to the hospital now – and I have gradually cut my nebulised asthma medication to the MINIMUM (it gave me other troubles)


I don’t have much puff – I look exhausted all the time (my husband too) and I’ve had to give up work, travel and socialising. I think you know all about this? But.

But, I shall not give in – and I am greatly encouraged to read about people like you and your son – who are also fighting this horrible environmental disaster. I am SO fed up with people saying, or at least implying, there is something wrong with ME. Yes, and NO – I say – the real problem is OUT THERE! It is what other people are doing – and it IS making them ill too – but they don’t realise it yet, why is there so much “vague” illness around? People call it “being under the weather”, “viruses”, “non-allergenic asthma” (I’ve had all those tests – they picked up NOTHING – NO biological allergies at all ….) they say they are “stressed” and “depressed” – and kiddies get “fraught” and upset at school … and then labelled as trouble-makers – or “poorly parented”, and yet, I strongly suspect much of this is because of our poor air quality. Even in so-called fresh-air – what a joke!


Poor us. Poor planet Earth. Hang on Diana – and James – and all the rest – we are like “pioneers” in this!!! One day, in the future, it will be recognised how terrible all these toxins in the air really are – even in their so-called tiny particle state. We take them into our bodies all the time. Humans are not designed for this. Maybe super-humans with super-strong lungs will eventually evolve? Who knows. But not in our lifetime. Why not just clean up the environment? And I don’t mean with chemicals (that’s what they think they are doing here, by the way – peach-scented disinfectant everywhere to blot out the smell of the smoke, YUCK!).


I send you lots of love and best wishes for 2007, Diana – thank you again for your articles.

Good luck – and God Bless you.

Josephine