by Ena Bowles
Originally published by the British Allergy Foundation (now Allergy UK)
I was aged 62 in 1994 when I was finally properly diagnosed with multiple chemical and food sensitivities. The word allergy was not in my vocabulary in those days. I knew nothing about them whatsoever, nor anyone who had them, so there was never even a germ of any idea of any connection with myself. For several years prior to 1994 my medical records had been growing thicker and thicker as I proceeded to grow sicker and sicker.
My white face with such black circles beneath my eyes was not a pretty sight which led to my husband's bright idea that we could perhaps make a fortune hiring me out to haunt houses. I hardly dared to look in the mirror let alone ask of it " Mirror, mirror on the wall, who is the fairest one of all?" That mirror would have cracked laughing.
Unfortunately I was too busy feeling totally grotty and ill to assist in any hauntings, and always seemed to be having various medical procedures aimed at finding reasons for the headaches, bowel problems, indigestion, newly-acquired asthma and nausea. A barium enema, a colonoscopy, and an endoscopy all showed no sign of abnormaility.
After the endoscopy a kindly nurse comforted me with reassurances that now I knew there was nothing wrong, I would probably start to feel better soon. I'm glad that she never knew that I repaid that kind advice by the ingratitude of continuing to feel worse and worse. I am also glad that she did not know how I left that hospital feeling helpless and hopeless that yet again no reason had been found as to why I felt so ill.
Being reasonable, I did question my sanity, but could not convince myself that all of my symptoms could be attributed to neurosis. Call me neurotic if you will. The despair of being in such a situation can not be described.
During my first wekk on an asthma inhaler I experienced indigestion so severe as to cause me regular vomiting, and by the tenth day my voice disappeared as if I had laryngitis, and each puff I took immediately caused asthma reactions. Every different inhaler tried as replacements caused exactly the same reactions, but now on the very first puff of any of them.
Then came six more unpleasant months of nausea which failed to respond to any medication prescribed. I soon started to see direct connections with certain things affecting me, but though they seemed bizarre to me, the word sprang to mind but never allergies.
The list was small in those days, such as the smell of washing powder and fabric conditioner, disinfectant and perfumed products of any kind. I just felt so sick and ill, and my voice would disappear, and I would wheeze and cough. Any contact with nicotine or even the smell of a "smoker's" clothes would leave me fighting for breath. Unable to use an inhaler, life became even more difficult. My GP's suggestion of depression became more insistent.
The day she and I parted company she had wanted to try one of the original medications for my nausea, having run through all others, but after six months of such unpleasantness, and not being relieved at all, my hopelessness and helplessness flooded in and I whined that it had not worked before, and "I feel so ill". Please I think there is something wrong with me." I'm sure she did too, but her opinion probably differed from mine. Her patience was obviously exhausted as she reminded me that I also said the asthma inhalers made me worse, and with ill-concealed irritation she told me to take the anti-nausea medication or not, just as I chose, and ended with "What do you think to that?" Such puzzling illness tends to make one vulnerable, but her question raised a last burst of the kind of healthy indignation I was capable of when I used to be me. I replied, "I don't know I'm only the patient." Poor G.P. - but poor me too, because although I suspected I had somewhere along the line been relegated to the "weird" league, I had now certainly confirmed my status.
I managed to register with another poor unsuspecting G.P. in another village not too far away. Knowing that he would not have my records immediately, and preferring him to decide at an early stage if he felt he had a crank on his hands, I decided to throw him in at the deep end.
On my first appointment I handed him a list of the things by now obviously affecting me. That list, as mentioned previously, was still short then. He glanced at it, but said he'd sort the asthma out first. Bless him, he did not know what he was taking on. He prescribed several inhalers one after the other, but never questioned the fact when I returned the next day to report the same reaction every time. He even stopped prescribing them, declaring we must find out what is actually causing your particular asthma. He sent oxygen cylinders to have beside me at home. When the number of things affecting me began to increase, gathering momentum and quantity like a snowball rolling down a hill, and even when that list included my rubber hot water bottle, newspaper, ink, plastic items, and then, horror of horrors, even any clothing containing synthetic material (i.e. man-made fibres produced with chemicals) he still accepted what I reported. His open mindedness was remarkable, but he showed real character the day I went to him and responded to his enquiry of "how are you?" with "it's a eureka week!"
I went on to explain about my son's visit. He was a computer consultant with no medical background whatsoever.
It had been some time since he was able to get up from London, and shocked by my new appearance, he had asked why I was ill, and of course I had to admit that nobody knew.
After asking me just a few of the things which were affecting me he told me I was allergic to chemicals. I would have been gob-smacked had I believed in miracles, but it seemed too ridiculous, and I'd never heard of such a thing. I argued that that I'd had an asthma attack only a few days ago in the doctor's waiting room, and I knew it was triggered by just the smell of the jacket the lady next to me was wearing. He asked what type of jacket it had been, and then explained that the country jacket/ wax jacket/ barbour has a chemical finish to waterproof it.
There it was at last!
I can't believe there can be too many G.p's who would react with as much pleasure as mine displayed without any resentment whatsoever at the source of the "diagnosis". He agreed with the opinion wholeheartedly, but was then concerned because, having never come across such a case before, he had no information as to where or whom I could be referred.
The ridiculous situation as that only once you have discovered why you are ill can you then know what books to get which tell you why you are ill! Great! I sent for one from "The Healthy House" and it was all there. Indeed it could have been written about me. There was also an address of an allergy clinic. My G.p phoned the specialist there for a whole hour one evening, and I later heard he has described me as a sensible lady whilst relating my illness and symptoms. How can two G.p's view the same patient in such a different light?
I was admitted a couple of weeks later and spent three weeks in there for very thorough testing. Any reactions shown to any of the tests are then checked by a seperate method, and any patient who might have any unconfirmed responses would have that explained firmly.
My results showed multiple food and multiple chemical sensitivities, added to allergy to mould, house dust mite, some pollens, and some animals (not cats and dogs thank goodness).
Twenty two chemicals were tested on me and I reacted to every one. My asthma was shown to be allergy-induced. I am reasonably well nowadays. Learning about the illness, and how best to manage it, has meant that I can now eat almost anything with only the occasional hiccup (not literally) when I have been extra silly., or if staff in a restaurant or cafe accidentally give me inferior quality cola or a diet cola instead. Any form of artificial sweetener has an immediate drastic effect on me, and two restaurants nearly had to call an ambulance. The staff had a nasty fright.
If I take care to avoid as many sources of chemical contact as possible, that helps me to empty my metaphorical "bucket", and I find myself able to tolerate some levels, which if I stop being so careful, would effect me badly. I help to keep my "bucket" levels lower by only using un-perfumed products, including washing powder, washing-up liquid, toilet soap and deodorants, avoiding normal cleaning products, and wearing only 100% cotton, 100% pure silk or woollen clothing. We do not take a newspaper, and I read the British ALlergy Foundation magazine wearing a chemical filter mask.
On 3 occasions of hospital stays for seperate matters, I have had to wear the mask 24 hours a day. Hospitals make me sick in more ways than one. A stay in there is a horrendous experience for me both physically and emotionally - but that's another ball game. I close the air intake of the car if close behind another vehicle, and when due for a change of car, we choose one over six months old with the proviso of automatic cancellation if the garage does anything more than vacuum it out. That nice shiny chemical finish on the fascia and steering wheel is the cancellation clause. No smokers or nicely perfumed people come into my home. I can go away to a hotel with certain restrictions. Non-smoking room only, and a request when booking for no spraying of air fresheners or polish to be used prior to my arrival. Of course hotels with an indoor swimming pool are a real hazard as that awful chlorine has a nasty habit of drifting along corridors, seemingly in search of my nose. Guests can find it puzzling to see some woman dashing by clasping a mask to her face. It's a good thing I can manage to cut and set my own hair now because entering any hairdressing establishment is unthinkable. Even passing by the doorway sends me into my breath-holding mode.
I take two of my own towels with me and cover the pillow with one, and place the other one over the top bedding to create a barrier between that and my offending nose. That protects me from any "poly" in the cotton sheets and from the smell of the hotels' washing powder. I use old-fashioned flannelette/ wincyette sheets at home, and a cotton candlewick bedspread.
Talk about clogs to clogs. Maybe Grandma really did know best eh?
This is an illness which requires the sufferer's wholehearted co-operation in helping themselves once it has been diagnosed. I maintain that anyone not prepared to take every precaution possible is not sick enough yet. I still have no asthma medication so I am forced to live by avoidance, and I have no serious asthma problems now. Not one emergency ambulance dash to the hospital since I was diagnosed. I manage to live an acceptably reasonable life within my limitations. If ever I get a bit hacked off with the difficulties of avoidance, and the times which are still a blasted nuisance, then I try to remember the time when I had to have oxygen beside me, and I count my blessings. Also I think of how lucky I was that I had already "retired" before the problems became serious. There is no way I could work now. Carpeted offices, photo-copiers and mixing with other people in close proximity are way outside my "limits". I thank my husband for his steadfast support, and for always sitting between me and anyone who might "smell nice". I am so sorry dear about your "Noir" aftershave, which you loved so much. In case the minister for health might read this, please note - I cost the NHS nothing now.
Ena Bowles (The Polyester Freak)