This piece was written in December, 1996.
When I was little I wanted to be an industrial chemist because my Dad was. Then I decided to be a nuclear physicist because I was bored in class and it was the hardest job I had heard of. A little later, I discovered computers and the science of artificial intelligence and I wanted to study it because it facinated me ... In 1992 I finished high-school with a score of 92% and won my way into one of the eleven places in La Trobe University's then-new Cognitive Science course. I loved it. In my first two years I studied all but one of the subjects in the supposedly-three-year degree and at the end of 1994 I was happier and more fulfilled than I ever remembered being. Then, in December 1994, I got sick with what I thought was a very bad flu. In February 1995 when I was no better, the supposed flu was diagnosed as glandular fever, and at the end of that year I was diagnosed with CFS - 'Chronic Fatigue and Immune Dysfunction Syndrome'. Since that December in 1994, nothing in my life has has escaped the effects of my illness, it penetrates every crack and crevice of my existence and leaves its mark.
After I was diagnosed with the glandular fever, my doctor of the time prescribed his glandular fever cure: vitamin C injections (which had only minimal effect) and rest. I got slightly better until about June that year, then plateaued out when I was semi-recovered from the glandular fever. I was well enough to spend about half my time up and doing something, as long as I spent the rest of it at home doing something that wasn't physically demanding, usually reading or watching TV, I couldn't cope with lots of physical activity or late nights. In September, I spent a week baby-sitting while my parents were overseas and during that time I couldn't get the rest that I needed. After the week was over I was much sicker I had been before.
Since September 1995 I've been deteriorating steadily. No fast, but definitely deteriorating. Some time around the end of 1995 I was diagnosed with CFS as I should have been significantly recovered from the glandular fever by then. I've been to see three doctors (plus several specialists in various disciplines) after the first one, all of them sourced through the ME/CFS society of Victoria, so they were aware of CFS. I have been treated with a variety of conventional drugs such as Nystatin, Sinequan (an anti-depressant), herbs, homeopathic and naturopathic substances, vitamins, minerals, and other supplements such as coenzyme Q10 and amino acids. Almost none of these treatments have had any significant effect.
With my current doctor I've found a few treatments - primarily anti-candida medication and a very strict anti-allergy diet - which are somewhat useful, but they've only been enough to keep me from noticeably deteriorating over the past few months. I'm definitely not improving.
I live in Melbourne with two friends/family who look after me, doing nearly all of the shopping, cooking, cleaning and gardening. If I didn't have this support, I would have to move back in with my parents and three younger brothers. I know from experience (I was forced to move back home for a month earlier this year) that the amount of noise and bustle at home is detrimental to my health, so I am grateful to be able to live where I choose.
Early in 1995 I was forced to drop out of University, as after the effort of getting there I was usually too tired to concentrate on the lectures and when I returned home I was too exhausted to study effectively. I attempted to return at the start of 1996 to study just one subject. The disability service offered significant help, including audio-taping my lectures, negotiating extensions on assignments and letting me sit exams at home, but even with this help I dropped from being a straight honours student to barely passing. After first semester (which took me 9 months of study to complete) I was significantly sicker from the effort of trying to keep up with my studies and was again forced to drop out.
I am now studying a TAFE course in small business management with Open Learning Australia. It is a correspondence-only course, so I can study at my own pace and submit assignments when I have finished the relevant work. It is slow going - I study 20 to 40 minutes per day and have only just finished the first small module - but it is much easier to study without the struggle to keep up with a class while I am ill. When I am sicker, I can take a day or a week off and not have to struggle to catch up when I return. Being able to study something is important to me - if I can look back at the end of the year and know I've achieved something then I can continue to feel that the CFS has not beaten me completely.
I survive financially by receiving sickness benefits from the DSS. It took several months for my application to be approved - they kept rejecting it on the grounds that I was "fit for work", but eventually accepted my application last January. The sickness benefits are supposed to run out this January, so I am currently waiting see if they're going to declare me "fit for work" again or allow me a disability pension. I have been informed that the DSS actuarial tables state that all cases of CFS recover totally within two years, which is complicating things as it means that the DSS see this as a short-term problem, whereas my doctors and myself have accepted that in my case it seems to be a long-term problem. Also, the sickness benefits are not nearly enough to pay for my medications - the things that help me are mostly not NHS medications and hence cost $20 to $40 a week, so my parents pay for these which puts a strain on them.
CFS, despite its name, is a lot more than just "feeling tired all the time". In my case, joint and muscle pains cause more trouble than the continual fatigue does. Other symptoms I experience include headaches, stiffness, multiple allergies, weakness in my arms and legs, balance problems, deficits in short-term memory, dyslexia, learning disabilities, occasional reactive depression, gastro-intestinal problems including nausea and systemic candida infections. The "immune dysfunction" section of CFS means that I am very susceptible to viruses and infections which cause their own additional problems.
Since I got CFS, I have had two periods of a few months each where I got secondary sinus infections which took up to six courses of antibiotics to clear up, during that time I was almost completely bedridden and unable to cook or clean or look after myself at all, I often couldn't communicate properly because I couldn't remember what words I wanted, or what order they went in. During both of these times I was lucky to have family around who took the responsibility for caring for me - had I been living without this support I would have been in serious trouble.
With my current state of health, I can't attend any social activities or go shopping for more than an hour or so, and to do that I need a wheelchair or a place to sit so I don't have to stay on my feet for more than a few minutes. I am physically capable of standing up or walking for more than a few minutes (up to about half an hour before I literally fall over), but if I do, I can be sure that I will experience several days of exacerbated symptoms afterwards. And each time I suffer a severe exacerbation - whether due to doing too much or secondary infection - it seems that I never quite recover to the level of health I was at before it happened.
Since I became ill I have developed agoraphobia - anxiety disorders are known to be a symptom of CFS. This further restricts the activities that I can cope with because being anxious uses up a large amount of emotional energy which the CFS just doesn't leave me with. It seems to be linked in with the severity of my CFS, when I have a 'good day' with the illness the anxiety abates along with my other symptoms. I have been seeing a psychologist to help with the anxiety, she agrees with the assessments of myself and my doctor that the anxiety is a symptom - and not a cause - of my illness, and we have had significant success in dealing with it using psychological techniques.
As another symptom of the CFS, I am allergic to or intolerant of many chemicals and foodstuffs, including gluten, lactose, most preservatives, yeasts, moulds and fungi, caffeine, alcohol, MSG and most other chemicals. This means that I cannot eat wheat, oats, rye, millet, milk, cheese, cream, yoghurt, coffee, tea, anything fermented, or any other foods which contain these things. I also react to smog, petrochemicals, grass seeds and pollens, perfumes, the fragrances in most detergents and cleaning supplies, and many other common chemicals. Coming into contact with any of these causes some or all of my usual symptoms - joint and muscle pain, fatigue, headaches, nausea, gastric problems, rashes, etc. - to worsen for between several hours and a week. Some months ago I had to talk to a woman who was wearing a sizeable amount of perfume - I spent three days in bed recovering from the five minutes I spent talking to her and breathing in the preservatives in her perfume.
This year a team of researchers from Newcastle University announced the results of biochemical studies on the urine of CFS patients. They had found two urine markers which were unique to those with CFS and which had helped identify several sub-groups of the one disease. In November, my doctor suggested that I have the urine test done - the results confirmed that I did indeed have one of the markers specific to CFS, as well as several other urine anomalies specific to what they termed, "pain/fatigue patients". I have had several other standard medical tests showing abnormal biochemistry, but this was the most significant in showing - as far as is currently possible - that I have active CFS.
I'm about 80% bedridden, I get up for an hour or two in the morning and evening. For these "up" periods, I can sit up to watch TV, work at the computer, study, sit at the kitchen table and cook, and anything of a similarly quiet nature. I can also sometimes go shopping if I have available an electric scooter, or a wheelchair and someone to push it.
When battling with a pain/fatigue causing illness such as CFS, ordinary household tasks become nearly impossible. On a bad day (which happens about 1/3 of the time) I cannot take a shower or wash my hair because I cannot stand up and balance for long enough to have a shower, nor lift my arms above my head to wash my hair. Chores such as doing the dishes, cooking or taking out the garbage provide similar problems. I have a high stool which stays in the kitchen so that I can cook while sitting down, but cooking still requires moving around the kitchen, and balancing on the stool, both of which are a battle for much of the time.
Getting dressed is impossible if my fingers are too painful and stiff to do up buttons or shoelaces so I wear things which do not require buttons or laces, and which are comfortable when lying in bed - tracksuits are good. Because I must be in bed so much of the day, getting dressed might seen un-necessary but I find that having some distinction between 'day' and 'night' is makes me feel better, even if the activities one undertakes are much the same. So I have one tracksuit designated to be 'pyjamas' and other designated to be day clothes.
Several months ago, I was referred to a neurologist to exclude a possible diagnoses of MS. He examined my reflexes, breathing and balance for a few minutes and then told me to sit down and said quite seriously that I was not physically ill in any way and I should be seeing a psychiatrist rather than a medical doctor. He refused to look at blood, stool and urine test results I had provided showing biochemical abnormalities, and he ignored that fact that I had fallen over on the balance tests he had given me. When he wrote up his results to send back to my regular doctor he simply omitted writing up the balance tests so the report came back saying that I was normal in all the tests. I am used to the general public being misinformed about CFS, but to find this attitude in a specialist doctor was very upsetting.
CFS leaves me at a triple-disadvantage dealing with people such as the neurologist who do not believe that I am sick - firstly, I do not look sick, I don't have purple spots and my hair hasn't fallen out so there is no external 'proof' of my illness. Secondly, my condition is variable, it is very difficult to explain to a doubter why I can get out of bed and do the dishes one day, and not be able to stand up the next day. The third disadvantage is the CFS itself, as being in pain and profoundly fatigued means that I am usually not in a condition to stand up for myself against people who have misunderstood or simply do not believe in CFS.
Despite all the problems that my CFS has caused I am determined that I will not let it beat me down. I concentrate on the things that I am able to do - I can study and slowly learn things, I can talk to family and friends, provide an ear when people want to talk to me, I can listen to music and unlike most people's, my life is slow enough that I can listen to the birds sing, find rainbows and watch the garden grow. Yes, I desperately want to get well, but I accept the fact that this might not happen for several years yet - having taken two years to become this ill, it is obviously unrealistic to believe that I will get well in the next month. So until such time as a cure is found, or I spontaneously go into remission, I will simply keep on doing the best I can to live NOW, and leave worrying about the future to the future.
