Lily (Not real name); 68 years of age; female; married; not employed or working; lives in own home with husband; lives in the West Midlands; mostly house-bound because of environmental pollution.
I had suffered from perfume sensitivity from my 30s although it became much worse in my 40s when I became aware that other chemicals also made me ill. I first became conscious that chemical-based fragrances affected me when I helped an elderly neighbour with cleaning, and she used plug-in air fresheners. I would come home and spend days in bed with flu-like symptoms. I sought help from my GP who diagnosed very bad sinus but could not offer anything more than suggest taking pain killers, antihistamines, steam treatment and avoidance of fragrances and other chemicals. By chance we heard a radio programme where a lecturer had had to give up work because of the same symptoms and attributed this to multiple chemical sensitivity. We then found that there was quite a bit of literature from America about MCS, and including much on the internet. Through contact with Allergy UK, we were advised to contact a private doctor who specialised in environmental illnesses and received a severe MCS diagnosis and CFS brought on by the MCS. We then heard about ‘Chemical Free’ which was just starting up and wrote to Nicki Greenham, who was in the process of setting up the charity and have been a member of this group ever since. I have now been suffering with severe MCS for some 20 years.
The symptoms I have are sinus pain, migraine, swollen glands, flu symptoms, brain fog, irritable bowel and retention of smells. Basically, housebound in order to avoid contact with fragrances and other chemicals. This includes not being able to use the garden when neighbours hang out their washing, have bonfires or chimney fires or are wearing perfumes. The illness even affects the ability to have hobbies, for example, I like to sew, but many materials contain formaldehyde and have been handled by people wearing perfume, which contaminates the fabric.
Contact with the GP is referred to above. I have tried to get action in relation to bonfires, but the local council is reluctant to take any action.
I found out about MCSA at the time it was being created (as Chemical Free in around 2007. We first engaged with Nicki (the founder). I was really grateful to know that there were others who suffered with MCS who I could contact about the illness. I initially contacted Nicki by letter and received much information by post and this included receiving magazines, newsletters and a pen pal list. I found a life-long friend who suffers from a similar illness, and we talk by phone every two weeks. Since the establishment of the website, I have gained much more information and sought to help the charity by referring articles of potential interest to MCSA. I frequently email MCSA with this information. I find the magazine and news letters very informative and try to use the information gained to inform friends and family.
I often look at the forum pages and have posted on this, as it can often help with issues I have, and I like to try to help others through this. I like the Facebook Group in particular as you can share information about MCS to others outside of the MCS group, thereby increasing awareness. I have also found its leaflets useful and have used them to explain the illness to others. MCSA is somewhere I constantly turn to and look at its website and Facebook page every day. Without it I would feel totally isolated. MCSA also acts in signposting me to other groups with this illness. The more information I have access to, the more I feel able to cope and MCSA has certainly helped in this regard.
