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Anelie tells about the progression of her illness from 1990 to 1996, and her experience as a teenager with Chronic Fatigue Syndrome.
1990 - how it all began | 1991 - we wonder
what is wrong with me
1992 - my first "crash" | 1993 -
I am diagnosed
1994 - still sick | 1995 - hope springs eternal
1996 - another "crash"
Social life (what social life?) | Communication
| School
The "How are you?" dilemma | Being
a 'Sick Person'
Coping with loss | Acceptance
Hello, my name is Anelie ("Snaf" to my friends). I'm 18 years old, I live in Sydney, Australia and I've had Chronic Fatigue Syndrome for 6 years.
In hindsight, it appears I developed CFS at the end of 1990, during my last year of primary school. It was the end of the year, and for 2 to 3 weeks I was away from school suffering from a virus. The symptoms were nothing out of the ordinary for such an illness - nausea, headaches and tiredness. However, it lasted much longer than any virus I'd had previously that year.
In 1991 I moved on to high school. During that year I repeatedly caught viruses, which would hang on for at least a week and often longer. I was away for roughly 70 days over the whole year, and at one point missed 6 weeks of school in a row. At this time I first experienced dizziness as a symptom. It certainly disrupted my school work, but being a competent and enthusiastic student, I was able to catch up adequately, and received excellent marks at the end of the year. My repeated illness puzzled both my parents and school; it was at this time my mother first heard of Chronic Fatigue Syndrome. However, we didn't feel my symptoms were severe enough to qualify as that disease. My doctor at the time treated my illness by running blood tests for glandular fever, which always returned negative results. I was occasionally given medicines to treat individual symptoms like headaches.
At that stage, my symptoms of CFS were: Frequent viral illness, usually involving headaches, nausea, low grade fever, tiredness.
My family and I noticed the abnormally long time it was taking me not just to get over each illness, but also to regain my normal activity level. During this year I stopped doing ballet because the strain it put on me was too much - I had very little stamina and missed many classes due to the viruses.
At school, I found it hard to explain my frequent absences to classmates. I remember one friend asking me why I couldn't just go to hospital and have an operation to make me better? I wished it was that simple.
In 1992 I changed to a different high school. I went to that school, a 45-50 minute train ride away, for a week before becoming severely ill. I was sick for the next 6 months straight. My symptoms were now: dizziness, the above viral symptoms, 'movement headaches', and cognitive difficulties.
The dizziness is both extremely unpleasant and difficult to describe; the best I can say is that it is a spinning sensation in the top of my head. It affects my ability to write, read, watch TV or a computer screen, and makes travel and motion sickness considerably worse. At its worst I have to lie completely still and not move my eyes at all. At this time, the dizziness was frequently accompanied by balance problems, which made me sway if I stood upright with my eyes shut. I also mis-judged distances at times by, for example, walking into door frames, or hitting a wall as I turned the corner. The dizziness is always present, at varying levels.
'Movement headache' was my name for a headache I began getting in this year. It was a strong, dull ache that got worse if I stood up, sat down or moved my head strongly in any way. When standing up, for example, the pain right on the top of my head would get worse. If I tipped my head over to the left, the lower left side of my head would hurt more. While sitting totally still, the headache was in the background and unchanging.
The cognitive problems were the most baffling. Ordinarily an intelligent and avid learner, thinking was suddenly clouded and confused. I forgot things extremely easily, I mixed up words and couldn't think of phrases I wanted to use, my concentration span was extremely short and my mathematical ability almost disappeared. What most brought home how badly affected I was with cognitive difficulties occurred when I was trying to catch up on maths work: I was going through a primary-school level test where I had to write the answers to 20 simple addition and subtraction questions in 20 seconds. The first question was "15 - 9", and it took me half an hour to figure out that answer!
During this period, I slept most nights from 1 - 2am in the morning to 11am or midday. The pattern seemed to change itself around, and was extremely difficult to 'go against'. Waking up any earlier made me feel especially dizzy and weak. Now, when I descend into a longer period of ill-health, my sleeping pattern begins to take on these hours.
At this time my parents and I were not greatly educated in CFS, having only heard of it by word of mouth and not read any medical literature on the subject. My cognitive difficulties were frightening and confusing, and I often feared I was going crazy. I would not wish that 'limbo land' of wondering exactly what was wrong on my worst enemy.
During this time I received a few more prescription medicines to treat individual problems: Prepulsid for repeated vomiting was one. My doctor was at best ambivalent over what precisely was wrong with me: he wouldn't commit to the idea I might have CFS, but he didn't have any other ideas either. He seemed to feel it was best to 'wait and see' what would happen next, and deal with each symptom as it arose. My school, however, required some more long-term thinking than that, and it was disenchanting not to have any firm opinion of how my apparent illness would progress. My parents and I were also worried about what my future held, as education is so important and I was missing a great deal. When my Mum suggested I could be referred to a doctor who was knowledgable on CFS, he said if I went to a doctor who "believed" in CFS, I would be diagnosed with it; and if I went to a doctor who didn't "believe" in CFS, I wouldn't be diagnosed with it. It is difficult to hear someone describe the need to "believe" in an illness when you are suffering its effects every day.
Towards the end of my initial 6 month-long 'crash' (a common term among CFS sufferers for extended, severe increase in symptoms that often occurs in cycles over a period of years), I discovered the effectiveness of vitamin C for treating my dizziness. If I took four 1000 mg vitamin C tablets at once, it significantly reduced my dizziness. This was a great relief, as although it didn't cure the unpleasant sensation, it reduced it enough to be more comfortable. I told my doctor about this, and he replied "that isn't possible"; however he didn't tell me to stop taking it, and I certainly wasn't going to. To have finally found something that reduced that problematic and sometimes tortuous symptom was a boon, whether my doctor believed me or otherwise.
Fitting in at school was difficult, but not impossible. I was shy at meeting new classmates, especially with the additional disadvantage of having to explain my illness to others when I didn't fully understand it myself. I caught up with the necessary work and finished the year with the hope of recovering over the holidays. My mathematics work suffered however, and that first 6 month absence affected the rest of my schooling - I'm still catching up from the 'basics' I missed out on then.
My first term of Year Nine went well. I was present at school for the majority of the time, and enjoying the regular contact with my friends. Memory for time and events being affected by CFS, I have trouble remembering exactly when things went wrong that year; I think I got sick during the Autumn holidays and this overlapped into the second term.
Basically, I was away from school as often as I was there (if not more), and the need to constantly catch up on work was very draining. Not only did I have to return to school as soon as I was able, I had to effectively do twice the work load - both what the class was currently studying and everything I had missed. This was something that plagued me all through my years at school.
Getting to know people is hard when you see them for a week and are then absent for two weeks. Constantly asking them for their notes, and help during classes, doesn't help a lot either.
It was in July of this year I first saw my current doctor. He was recommended to us as a doctor who has dealt with CFS sufferers before, and my family and I hoped he would be able to diagnose me officially. After listening to my story he agreed that, yes, what I had fitted the description of CFS very closely. My relief at finally having official approval was tremendous. It might sound strange that I was pleased to be told I had a chronic illness, but it validated everything I had experienced. This doctor believed me when I said vitamin C helped my dizziness, and told my Mum and I how vitamins, minerals and health supplements have been used to help patients with CFS.
At the time I first saw him, I had become quite withdrawn and quiet; I always looked like 'death warmed over' with a very pale face and large bags under my eyes. During those first few months of treatment (which involved vitamin injections, some prescription drugs and a strict diet) my health improved dramatically. So much so, my parents and I felt I was on the road to recovery, and by the next year I would be well.
Unfortunately, 1994 mirrored 1992 very closely. I made it to school for a few days and then I was sick for six months again. My doctor encouraged me to leave the school system and study via correspondence, as this would reduce the physical stress of constant exercise, travel etc. My family and I found such a decision daunting, however my health made the decision for us. Half way through the year, my school decided I couldn't possibly catch up on enough school work to pass the School Certificate, and I would have to repeat the grade. Although I had suspected I would have to do this (after all, you can't miss months of school, still be ill, and realistically expect to stay on a par with school mates), it was a blow. I knew the cause of my repeating was out of my hands, but I still felt extremely let down. How could I, the person always praised for being intelligent and conscientious, be repeating the grade?
For the next six months I stayed at home. During the fourth school term I studied years nine and ten work through distance education, which compared to the struggle of institutional school was wondrous. To be able to do what work I could when I could, and not be continuously catching up and falling behind, made me feel like a competent student again. In combination with my doctor's treatment and the lack of physical and mental pressure of school, my health once again took a turn for the better. By the end of 1994, I was capable of going for a short walk every morning, completing my week's school work in 2 and a half days and gradually getting back to a more normal existence. Once again, things were looking good for the next year.
In this year I returned to my previous high school to repeat year ten. I lasted in good health for a term, and my second term wasn't horrendous; I missed 17 days of school in that first semester, my best record of attendance at school ever. I was able to do my half-yearly exams. The holidays and terms after that were almost entirely taken up with illness, in total I missed 44 days of school. I was sick for weeks on end, and I think I only went to school for a few days in the whole of term 4. My teachers were able to estimate my School Certificate marks from the small amount of work I had done, so I did graduate from the grade.
In October and November I went to see an immunological specialist. Our first appointment was a long one, and during that time he felt it would be wise if I went through a number of tests to rule out any other diseases or causes of my symptoms. He did not feel a psychiatric analysis was warranted. I stayed in hospital for a week, and had an ECG, Sleep Test, Audiology and Balance test, neurological investigation (where I answered questions and had all my joints hit with those little hammers), MRI of my brain, a Chest X-Ray and many blood tests.
My relatives and family were hoping the tests would find something, hopefully a something that is cured with one Magic Pill, unrealistic as that was revealed to be. Every test that came back 'normal' was a disappointment, although the delivery of my brain scans was livened by the specialist saying "You'll be pleased to know you DO have a brain." I suspect he uses that line on everyone. One thing I did gain from that stay was an explanation of one of my types of dizziness (there are two) - it was being caused by low blood pressure. I was able to go on electrolyte drinks to help that. Also, my 'movement headache' was described as a type of migraine.
We once again hoped much rest and taking care of myself over the Christmas holidays would improve my health.
Under the apparent Curse of Even-Numbered Years, I went to school for a few days and missed the next 6 - 7 weeks. My family and I now realised it was impractical and unrealistic to hope that I would recover enough to return to school, so I left my high school for good and switched back to Distance Education.
Teachers at all my schools have been positive and encouraging of me, particularly as I was able to gain high marks in many subjects despite my absences. They have complemented me on my determination throughout this period of my life, and expressed disappointment when I have had to leave school due to CFS.
After about 5 weeks of Distance Education I was struck low with an illness I have still not recovered from at the time of writing (December 1996). Because my 'background' symptoms of fatigue, dizziness and low blood pressure are so noticeable, I suspect I am in a CFS crash. Every symptom I have described above remains. In addition to those, this year I have experienced joint pain and facial neuralgia for the first time.
In fact, I am worse off now than I was when I first got sick, although I do have occasional 'windows' of good health. When faced with a 'well-ish' day, it is hard not to do anything and everything, thus wearing myself out. The rare experience of energy and clear thinking is something I want to use to the utmost. I always pay for this during the next few days, with worsened symptoms and sometimes altogether new infections.
Because symptoms can change so rapidly (within hours and days) with CFS, I have to see my doctor regularly; usually once a fortnight unless I have a virus or other illness, in which case I go once a week. The injections of vitamin C in particular really help my dizziness and give me extra energy for that day. I have regular injections of B-12 and Gamma Globulin, which give me a very noticeable lift in energy and alertness. I often need his advice on new symptoms and strategies. I have no doubt I would be considerably worse off without his treatment, as I always suffer when I miss out tablets and don't follow the diet. Chromium tablets are one rapid-acting supplement that reduce muscle shakiness and cramps.
My doctor is a source not only of information and treatments, but also support; he is happy to hear about new research into CFS, good books on the subject and other people's experience of particular treatments. It is always heartening to see him and experience his enthusiasm to find a medicine or supplement that will help me. He feels I will recover from this disease, and that finding the right combination of treatments and lifestyles will be central to my recovery.
Planning your social life is impossible with a disease as fickle and changeable as CFS. I once read that the stages of grief are denial, bartering, anger and acceptance. It occurred to me that this is a good parallel for trying to live and plan your life around CFS:
During Friday I'll run through denial ("No, I'm not too dizzy, it's just low blood pressure, I'll drink this electrolyte solution and I'll be fine...") and bartering ("I'll rest on the sofa in the morning and not do too much, then I'll recover...") once again, before faced with the deadline of it being time to leave.
Heaven knows how many get togethers and days out I've had to cancel over recent years. Gradually, people just stop inviting me, under the assumption that "Anelie won't be able to come, she's always too sick." Even though in the majority of cases I can't accept invitations, I still would like to receive them; it lets me know people are still thinking of me, and would still like to have me with them if that is possible. Unfortunately, the longer I'm away from friends and out of contact with them, the less they think of me as likely company. A friend actually told me recently that the only reason she was asking me was that no one else wanted to go.
Which brings me to the subject of insensitive comments and trying to communicate when you are chronically ill. I have been relatively lucky with the things said to me during my illness - my relatives in particular are always very kind about my limitations, and still happy to see me. A few comments that come to mind include...
Isolation and a feeling of abnormality come along with chronic illness. Many times I returned to school and didn't have anyone to sit next to in class, everyone else having found a partner in my absence. The situation would be compounded because I'd then sit by myself, which gave me the reputation of a loner, so everyone assumed I wanted to sit by myself. For most of 1993 I didn't even have a chair and desk in my home room, because every time I was away, someone from a nearby classroom would borrow it and not give it back. I used to arrive in home room in the morning and put my books and bag on the lockers, sitting on them up the back of the classroom, alone, until someone could remember where my desk had wandered off to this time. It made me feel like I didn't exist.
In recess and lunch I'd be sitting with friends and hear: "Hey, do you guys remember the time Mrs Smith told Amanda to .....", followed by raucous laughter from everyone except me. I'd frown, trying to remember, and ask "When was this?" and the group would hush as someone said "Oh....you weren't here." That lack of shared experience is another barrier in the way of established friendship. The other dread statement in this category often happened as I first walked in to class after a period of illness: "Oh, Anelie, you're back! Have you studied?" "Studied for what...?" "The maths exam! It's on first thing this morning...!"
It is such a pain trying to behave socially when you've got a chronic or long-term illness. Someone says "How are you?", and you've got two options:
The problem with "Fine" is, it's a lie (for me, I'm never totally fabulous), and I run the risk of suggesting to the enquirer my illness isn't very serious after all.
The problem with the second answer is, healthy people don't understand that chronically sick people can be emotionally happy and feel ill at the same time. A particular problem is when you're asked how you are by the host, who interprets 'unwell' as meaning you're not having a good time, which may not be the case.
So do I go into grisly detail about my illness? List some symptoms and so on, and wait for the usual Automatic Pity Response? Or be brief and have the problems associated with option number one above.
I feel I'm stuck between a rock and a hard place, as I can either:
I find a good way of describing the burden of having to state how you are to every person you meet is to say: Imagine, every time you talk to someone, you have to start off by telling them your full name, age, height, weight, occupation and whether you are happy or sad. Describing CFS can be like that because although individual symptoms may alter, over an extended period you are always at some level of illness; that, after all, is what 'chronic' indicates.
People I only see once or twice a year still feel compelled to tell me they're sorry, and express their hope that I will Get Well Soon. This year will be roughly the 4th consecutive year they've done this, and it seems a bit pointless now. While I appreciate their concern, I am learning now to be comfortable with the idea of being a 'Sick Person'. I am less nervous about telling people the details of my illness, as I feel communication can only improve with more knowledge on either side.
Being seen as a Sick Person is a big change in one's life. For illness does not only affect your physical image in others' view, but along with it comes assumptions about your personality. If someone is described as 'sick', this conjures up an image of someone who is pale, weak, boring, diseased, taboo. Here are two examples demonstrating this common perception of sick people:
The first comes from a magazine interview with an Australian netballer, who told of the severe case of asthma she had as a teenager. Her doctor and mother had not told her at the time just how bad her asthma was - in fact it would have been life-threatening if she hadn't been monitored closely. The netballer stated she was glad her mother and doctor had conspired to keep this from her, because otherwise she would have become "...pale and sickly and self-absorbed."
I came across my second example while reading Jane Austen's Pride and Prejudice. The lead female character, Elizabeth, is pleased when she sees Darcy's intended bride, the daughter of Lady Catherine de Bourgh, because she is 'pale and sickly' and 'will suit him perfectly'. At this stage in the text, Elizabeth does not like Darcy, and the above statement is at the very least a suggestion that marrying a 'pale and sickly' person is most unpleasant, and a punishment for Darcy's pride and arrogance.
That a physical illness makes you boring and self-obsessed is an illogical but wide-spread perception. It is something I have to overcome any time I meet someone who has been told previously of my illness.
I am a great one for planning, and when I was younger I had the whole first half of my life planned out: I aimed to go to school, graduate with good marks, do a university degree, live an independent existence in my own flat and get a good job which I enjoyed. These ideas gradually fleshed themselves out as I got older; I would do a Materials Science course, and I would move out of home at age 18.
I turned 18 this year (1996), and I am more dependent on my parents than ever. Being greatly self-reliant was a definite goal, and it is hard to watch friends graduate from school, get part-time jobs and learn to drive, when I can barely manage to walk around a shopping centre. A TV show I saw once had a little girl ghost lamenting the fact that as her human friends grew older, she was perpetually the same age. She described it as like being on the river bank, while everyone else is in the river. I think this describes living with CFS as a young person very well.
This feeling even leads me to not wanting any more birthdays until I recover - every birthday is a milestone of what hasn't happened, what I haven't achieved, how far behind I am in comparison to others my age. I had assumed, when I was younger, it would become easier to live with chronic illness as I grew older; in fact the opposite is true. The older I get the more expectations there about what I 'should' be doing.
Two insignificant things are guaranteed to remind me of what I've missed due to CFS - the fact that I joined the school choir at the beginning of 1992, and never sang a note with them; and my intention, when changing to a new high school that same year, to try playing hockey. Maybe these things sadden me more because of their scale; realising how markedly different my life is from other normal teenagers is so far-reaching it can be hard to comprehend.
I know there is much debate in the medical community about whether CFS is caused by depression; whenever I hear of that hypothesis, I can only think of all the things this illness does to one's life: gives you a new and frightening long-term illness to deal with, halts your job and/or education, makes relationships with others difficult, puts financial strain on you and your family, forces you to become much more reliant on others, all of this quite apart from the myriad symptoms experienced. I would defy anyone to go through this much upheaval without some feelings of sadness and depression. Not being a doctor or psychologist, I don't know where 'sadness' stops and 'depression' begins, but the episodes of profound sadness and anxiety I have experienced are something anyone who has had a chronic and/or serious illness can empathise with.
In telling my story here, I've focused on the disadvantages of being sick, but these are not things I dwell on regularly. In fact, in leading a life tailored to my limitations and abilities, the things I have missed out on do not worry me at all, most of the time.
This year I have learnt to accept my illness, and to realise that although it forces itself to be a priority in my life, it is not my whole life. I appreciate the smallest things that everyone else ignores; sun shining through the leaves of the trees in my backyard, a good book, the affection of my relatives and friends. I don't want this illness, and I want it to go away as soon as possible, but I think, until it does, I'll be able to live with it. There'll be many more days when I moan and grumble to myself over missed opportunities and unpleasant symptoms no doubt, but I'll survive them in the hope that one day they'll be a distant memory.
Sydney, Australia - December, 1996
Update: "Since the end of 2000 I've experienced a major improvement in my health" - read The Road Back on Anelie's own homepage - Snaf's CFS Sofa.
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Moira A Smith - Canberra, Australia
last revised 21 June 2001