My Personal Story - by Nicki Greenham
When I was 18 I was diagnosed with Crohn's Disease. My health has never been particularly great, but I assumed that everyone else was the same. After a turbulent year of liquid feeds and medication, I resumed my degree course, graduated, and started primary teaching. Three years later I felt relatively healthy, and decided to go and teach in Ghana. Because I was still taking medication for my Crohn's, I sought advice from two different doctors and a travel nurse before embarking on a course of vaccinations. In fact, my homeopath was the only person to suggest my body might not cope. She turned out to be right. I dramatically collapsed half an hour after the second Hepatitis B injection. Although I didn't realise it at the time, it was to be the beginning of five hellish years of Chronic Fatigue Syndrome.
A few months after the initial collapse, I began to recover. My doctor decided I was suffering from a viral infection and refused to believe it had anything to do with my vaccination, "Pure coincidence!" So, convinced I was well on the road to recovery and having abandoned notions of Ghana, I joined my friends on a six month trip to New Zealand.
I was patently not as well as I perceived. On the outward trip, I collapsed in Los Angeles, Fiji and Auckland, each time taking longer and longer to recover. Finally I passed out on a small island south of New Zealand and had to be rescued by speedboat. By the time I got back to the mainland, I hardly had the energy to eat, let alone cook or cope in a youth hostel. My friends had had to move on so I booked into a B&B for 2 weeks, alone and desperately trying to recover enough strength to attempt the flight home. Two months later I was still there, scared and seriously ill. It was at this point I was diagnosed with Chronic Fatigue Syndrome (CFS) although I still had no understanding of what it meant, or how to pace myself.
I have always been a determined person, and refused to let illness rule my life so I continued to push myself, and in the following 18 months ended up in the classic 'boom and bust' cycle. Each time I recovered enough energy to do something, I overdid it and collapsed again. After forcing myself through a whole year of full-time teaching, my body finally had enough. It gave up - pushed to the limits and utterly exhausted. This time there was nothing I could do about it.
In the following months my health deteriorated until I became bed-bound with hardly the energy to speak or eat. I became allergic to all food except rice, fish and carrots and my weight plummeted to 6 ½ stone - I was literally starving. For 3 months I didn't have the strength to do anything except lie in bed, eat, stumble to the toilet and then spend an hour recovering enough energy to do it all again. Conversations were limited to one minute every couple of hours. It was a very dark time; I was confined within myself and unable to tolerate light or noise.
Confusingly all my blood tests seemed fine. The doctors had no explanation for my condition as technically I seemed healthy. I began to wonder if it was all in my head. Then, gradually I began to notice all the allergies which were making my exhaustion worse. Seemingly bizarre, the list grew and grew, all with different reactions: washing powder, ripe fruit, telephones, moisturiser, my cats, plastic, kettles, pollen, dust, soap, deodorant, sugar, gas, aluminium foil, marmite, bread, tomatoes, essential oils, shampoo, acrylic, polyester clothing, carrier bags, polystyrene, toothpaste, bleach, newspapers, and mobile phones. I became so hypersensitive I could smell a ripe banana from the kitchen downstairs, through two closed doors. This, I later discovered, was an acute allergy to yeast. It was terrifying. Eating was a lottery as I had no idea which foods would make me collapse. When my partner began to creosote the shed, my reactions were so severe I thought I was going to die.
My condition was so unusual it seemed completely beyond medical experience and resulted in a psychiatric referral. When the mental health team decided I actually had no need for them, my application for a carer was refused even though I was blatantly too ill to get out of bed. Practical advice such as 'leave her a flask of food' was of no help when I didn't have enough energy to take the lid off the flask.
Struggling on, we installed a water purifier and chlorine filter and with enormous persuasion convinced a Vega test practitioner to come to the house to test for food allergies. Changing my diet, water, washing powder, and taking a vitamin B supplement all in the same week took such a load off my immune system, that I had enough surplus energy to get out of bed and sit in a chair. I even brushed my teeth, and over the course of an hour managed to change into fresh pyjamas. The great road to recovery had begun.
Gradually eliminating contact with my allergens, I gained enough energy to manage five minute forays on the internet and began to make sense of what was happening. I actually learnt what CFS/ME was and how to pace myself. I found out I wasn't going mad, I had Multiple Chemical Sensitivity; I was a 'universal reactor' and had a low tolerance to electromagnetic fields. I was amazed to learn there were other people going through exactly the same thing. Having a label for the illness was a huge boost for morale, and gave friends and family the reassurance they needed that my illness did exist.
Through rigid pacing (one minute of activity followed by 40 minutes rest) and avoidance of as many environmental and food allergens as possible, plenty of Yoga Nidra, vast quantities of nutritional and herbal supplements and an anti-candida diet, my health began to improve. After 18 months, I had enough energy to go up and down stairs whenever I liked. I could get dressed, wash, and make myself one meal a day. I was able to listen to the radio or watch an hour of TV, and even get out of the house once a month without suffering a major relapse. I really was on the road to recovery.
As I learnt more about my illness, my health continued to improve and I began to think about writing down everything I had learnt. It is a sad irony that those suffering from scarcely-known conditions such as CFS and environmental illness find their ill health prevents them from accessing the information and support they need. They, their friends and families are too often just 'left to get on with it'. Thankfully things are beginning to change although individuals with MCS are still way ahead of western medicine. This website contains the information that would have made my life so much easier had it been available at the outset. Just knowing other people are going through the same thing can give you enough strength and hope to get through another day.
Five years on from those initial vaccinations, I am still regaining my health. Little by little my allergies are decreasing, and I have discovered enough new foods not to have to go to bed hungry. Life with multiple chemical and food intolerance is a constant compromise, but if I avoid all my allergens I do have enough energy to live a fairly normal life. I now have a much better understanding of my illness and what I can and can't tolerate, being able to go out of the house a couple of times a week.
Your road to recovery is unlikely to be the same as mine but I hope my story may be of some assistance in helping you solve the puzzle of your own illness - countless times I have felt like a detective solving each exhaustion riddle one by one. Above all I have learnt to believe in myself, trust my intuition and ask for help. I am convinced that with my new knowledge of how my body works and how to live in a less toxic environment, that soon I will be more healthy in body and mind than I have been in the last 20 years - and I am really looking forward to it!
Nicki Greenham: May 2007