Published by Simon Lawrence on 30/09/2018
A Painfully Nuanced Life: The impact of profound Multiple Chemical Sensitivity in Severe ME.
(Published in the latest edition of “MCS Aware Magazine”)
‘How can I convey to you that I live in a totally different world than you, even if I am in the same room as you, even if you appear to be in the same physical space as me, believe me I am not experiencing anything in the same way as you.’
This is a very short extract, from my new book: ‘Caring for ME’. It is a quote from my wife.
I am sure that everyone who experiences MCS can relate to what she is saying. Suddenly when you develop MCS, a whole invisible world, previously unknown and unimagined, opens up. Smells and chemicals that others tolerate or do not notice, perfumes that they adore, become a nightmare for you.
In the most extreme cases, it cuts people off completely from normality as it was known, on every level, leaving them totally isolated in a world that torments or harms them. Their symptoms are very painful and difficult to manage.
Suddenly you are in danger from letters in the mail, which often come doused in perfume, from shopping in bags covered in perfume, especially if it delivered via a home delivery scheme, from the fresh air even, saturated by laundry conditioners, barbecue smoke, deodorants that give you a severe headache or cause you to be nauseous, develop rashes and severe symptoms such as throat paralysis.
Suddenly your world becomes painfully nuanced by other people’s lives, in ways that you simply could not have imagined and which those who perpetrate the problem cannot imagine either!
MCS makes an impossible life a nightmare. I have had to become very good at asking any tradesman who has to visit, not to wear any aftershave or perfumed product.
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.
We have not been able to find a mask that my wife can tolerate, her skin is so painful and sore to touch that she cannot bear the pressure. One that we did order had to be hung on the line for days, it smelled so much and was still unusable, sadly.
If I dare go anywhere, I need to shower and change very, very quickly.
MCS; it is a disabling lonely experience.
Into this world, the carer is thrown, having to learn what is unseen. Life with a person with MCS demands that you become acutely aware and sensitive, that you develop skills and practices in order to live with or help the other person to deal with all that is required. Not easy, especially when you cannot even smell the scent that your wife is getting so disturbed by, the one that is going to cause a devastating deterioration in her health and much more disturbance to an already painful and difficult life.
My new book is about caring for people with multiple sensitivities to chemicals, noise, light, movement, touch, food and the host of other agonising; all, disabling symptoms, that are found in Severe ME, yet are so often unseen and unknown by the normal world.
Many people do not have a clue how to approach someone safely. I have been caring for my wife full time for the last 25 years, I am still learning.
How to provide the best care then? It is only possible, we have discovered, by taking a moment by moment approach, seeing what is possible in each moment, dealing with issues that come up as and when it is possible – some moments are too incredibly difficult and painful to achieve anything. Even your presence with the person may be too much. In all moments the greatest possible tenderness and awareness, on the part of the carer is required.
This book is witness to a secret, hidden, tormented existence and unimaginable, intractable suffering, that never ends. That is its starting point. The book is part information, part a journey of self-discovery, through questions designed to challenge and hopefully affirm the carer, helping them identify areas they may need to develop further. I have answered many of the questions myself, to encourage and enable.
“Caring For ME” is a little pocketbook of encouragement and affirmation hopefully for difficult days and happier days alike.
By Greg Crowhurst