PERFUME SENSITIVITY IN SEVERE/ VERY SEVERE ME

Stonebird

Perfume Sensitivity makes an impossible life a nightmare. I have become very good at asking any tradesman who has to visit, not to wear any aftershave or perfumed product.

Not easy!

If someone pats our irresistibly cute Corgi, who goes around wagging his tail and making eyes at everyone, it's horrifying if they are wearing perfume. Hours of torment can follow.

The neighbour's washing, wafting waves of fabric conditioner across our garden, makes outside a no go area.

Letters and parcels are a huge problem; inevitably they smell of chemicals. Just the slightest whiff does immense harm. We have to be so careful, gloves and bags at hand.

We have not been able to find a mask that Linda can tolerate. One that we did order, from a so-called Eco store, had to be hung on the line for days, it smelt so much.

If I dare go anywhere, I need to shower and change very, very quickly.

The house badly needs decorating. We spent a fortune, £70 a can, on "Odour-free" paint, only to find it isn't. The company refuses to take it back.

Perfume Sensitivity; it has to be the most disabling, most lonely symptom of all.


Comments

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more