Donna

Firstly, I'd like to thank Diana and the team for inviting me to be the Coordinator for Scotland, I take this as a great compliment!

I've been looking for such a position for years to try and help with MCS, but couldn't find anything. So thank you!

My story mmm!!! Well I was always ill as a child. Lots of things: tonsils, earaches, heavy colds, pneumonia twice before age four; so I had lots of penicillin in me. I am not sure if that is to blame for the beginning of MCS. I was always a bleeder too, so when I got taken to the dentist it was very worrying for my aunt Eva who brought me up, as gums would bleed heavily for days. Because of this when being taken into hospital to get my tonsils out at five years old, they decided against it.

I didn't really notice much else until around seventeen. I had started a job in a printing factory where I worked with lots of glues, inks, paper of course, (which has fine dust on when new), varnishes and the main culprit I felt at the time, Bronzing. It's on whiskey bottle labels which we had to flick through in piles to overlook for flaws. The bronzing - gold dust we called it - would fly in your face all day and leave your skin gold at the end of the day. This seemed to cause me to feel violently sick, but no one else seemed to feel it. Then I took a growth in my right eye, which I still have to this day. Forty-three years on, the docs blamed it on eye makeup and I was given drops which caused really bad headaches, so I had to stop them.

I visited my GP in the late 1960s telling him that furniture polishes and window cleaners and things at work were making me feel drained, sick, and very moody. He laughed in my face, I couldn't believe a doctor would do that, so I left with some pills for sinus problems and didn't mention it again for many years to him.

I tried at the library to find books on the allergy as I didn't know the name MCS at the time, but all I found was people with brain disturbances, so tried not to tell too many folk I had this, in case they thought I was mad.

I struggled on feeling ill for years, until around 1980 when all the new perfumes came out, (the expensive ones). Mmmm full of petro-chemicals of course, and everyone was going mad to have these, this is when I noticed the heavy load kicking in, as at work I was surrounded with CK - the most lethal of the lot - what a disgusting smell it has too. I started to look like a ghoul with dark circles above and below my eyes, feeling tired and sick all the time. My travel sickness that I'd always had was getting worse too, so my work was suffering as I worked with kids in a nursery and couldn't go on trips with them on a bus.

In the early 90s I went back to my GP and told him that this (allergy) was getting worse and asked him to send me to a hospital for tests, he listened this time and wrote out a letter to the hospital. I waited eighteen months for my appointment. I saw a top dermatologist, a Dr. Thomson who asked me some history of my life, (to determine if I'd been abused as a child, the usual stuff)! Then they took five or six blood tests and told me their was nothing wrong with my blood and asked if I was sniffing glue. I burst out laughing, not that I thought it was remotely funny, but would have cried if I hadn't laughed. He looked at me and said well not much I can do here, but I stood my ground and asked for Patch Testing to be done.

He complied, but I waited months for it. He pointed out to me that they were very expensive. Too bad, I thought, as I had asked or got nothing from the NHS in Scotland for years. I was sent for the patch tests and out of the many stuck on my back, three flared up right away. I remember the nurse pointing that out to another nurse, about how dark blue they went right away. Even they made me really ill for the two days I had to keep them on. When I got them off, the nurse told me that this had cost a lot of money and only showed up Perfume. I said that's all I wanted to prove and she looked at me as if I was mad. No follow up help, until again at my own insistence in 1996 I asked to see a homeopathic doctor.

I waited three years then contacted them asking why it was taking so long, they said they were very busy, but within weeks I got an appointment. The doctor there was lovely man. He sat patiently listening to me and did some prick tests on my arm. They showed nothing so he eventually had to admit to me that he couldn't help, as he wasn't an allergist. And surprise surprise, there weren't any in Scotland, so I asked him if I would be sent to England for treatment. He said to contact my GP again and gave me a powder for the menopause which I was going through at the time. I found that funny! Still he listened and informed me of the hopelessness of it all.

Now I took the bull by the horns, said to myself, "Right this thing exists, at last I know it exists. I'm not mad, or ill, I have an allergy which isn't an allergy but I'm gonna fight it on my own!"

I found out about Allergy UK in England, joined them, but at that time, six years ago or so, they didn't have MCS as an allergy so they referred me to AAA, who were helpful. I sat and cried when I found out there were other people like me. I wasn't a freak anymore!

Since then I've written newspaper articles to help Allergy UK bring this condition out into the open, and then did a paid "Womans Own" interview. I wasn't paid much but didn't care. I put it towards a computer with my son's help, best thing I ever did. Now I could contact the World and what a bloody mess I found the World was in.

I've since written numerous letters to the Prime Minister in London, who passed my letters on to the Scottish Parliament and the Scottish Executive. They admitted to me that they've known of this illness for many years, but have no plans at present or in the future to open new clinics for this and other respiratory conditions. Nice of them eh? So I've soldiered on and have good MP from Glasgow on my side now. He wrote to the Head of the NHS in Scotland for me, but this has gone on now for two years being passed from pillar to post from one doctor to another.

Now to conclude my epic story, an immunologist, a Dr. Caestecker is sending me back to the homeopathic clinic, even though I told her nothing could be done for me there. I asked her to see me, but she declined as I don't go into anaphylactic shock. She seemed annoyed at me over the phone, saying to me, "What exactly is it that you want us to do?". I said I want the help in Scotland that I deserve, as I've been shoved aside for years and said some stuff about the money wasted on the self-inflicted illnesses that get money ploughed into them! Better not start me on that one...

 

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