My Story

I can't remember when I first became ill.   It probably started when I was around 13 but it was something I couldn't put my finger on or describe, all I knew was one day I'd go to school and feel great - I loved being there; loved learning; had friends and at the end of the day I'd go home glowing.   I'd had a great day.   Then the next day I'd go to school again and things wouldn't be quite so good., things seemed a little off.   Things just seemed harder; teachers seemed tougher; friends seemed crueller.  I didn't realise it was me that wasn't right, or what was causing me to feel that way. Being at young age I found it very hard to understand tiredness.

A parent can tell when a child is tired - they're grumpy and restless - but the child will deny it. Children only know specifics- sore tummy, sore throat – they can’t identify the subtle feelings of tiredness. So I didn't understand what I was experiencing.   All I knew of tiredness was the feeling when your eyes nip and you can't stay awake, and that wasn’t how I felt, so why should I think I felt tired.

By the third day I felt horrible and unhappy, like I could never catch up on work, and I just wanted to go home.   The next day, I would lie in bed waiting for my mum to come and get me up, and I would know I just couldn't go to school. I couldn't explain it, I just knew I couldn't face it.   The only thing I can compare it with was, I once ate some food that was bad.   It didn't make me sick, but I just couldn't face food for a while, the thought just made me burst into tears.   That's how it was on those mornings, the thought of getting up and getting dressed and spending the day at school would make me burst into tears.   It wasn't fear, I didn't hate school, I still had the "day one's" in my mind and I would try to talk myself into believing that if I managed to go it would be just like that and I would have a good day, but it never worked.   I wanted to be able to do it, because I knew it upset Mum that I wouldn't go.   She would tell me to try and get dressed, or she'd ask if there was something else, a problem, at school.   But there was nothing, and it only made me more upset because I couldn't explain it, I just knew I couldn’t do it.   So I would say I didn't feel well, I would try to say something specific like a sore head or a sore stomach, but I would feel like I was lying.   Eventually, when Mum would say okay, that I wasn't going to school, I would feel so happy, so relieved, it made me feel guilty.   Maybe I WAS faking because, if I was really ill would I feel so happy?   But I wasn’t faking, I was just relieved that for that day I didn't have to fight anymore.

I should have realised I wasn't faking because I am the kind of person who HATES doing nothing -even if I'm watching TV I'll do something else, like drawing while I watch - yet on those days when I was off school I'd do nothing. I wouldn't shower or get dressed or play records or games.   I would lie in bed or on the settee and sleep or just lie there watching TV.

 I had never been a child who needed a lot of sleep.  We were always up late compared to other kids our age and yet we never had any problem getting up in the mornings.   I would often be awake reading when Mum came to wake me up; even on Saturdays I was up first. And here I was sleeping off and on during the day, yet not realising I was tired. My mind was not sophisticated enough to understand what my body was telling me.

This went on for several years.   I would try and try to go to school more, and Mum tried offering incentives - I would get a present if I managed a whole week without being off - but it didn't work even though I tried and tried.   There was NOTHING wrong at school, in fact there were a lot of things I loved about school - a lot more than most of the people I knew, and they managed to go.   But it's hard to convince people when you're not sure yourself.

People used to worry I was being bullied or that I had no friends. Actually as time went on I did develop problems with friends, though only as a result of my frequent absences from school, it wasn’t the reason I was staying off school. I still had a group of friends who were there for me when I was there.

It was more the teachers who made it hard for me when I was in school.   Some teachers could see I was honest and I always worked hard when I was there.   I wanted desperately to please.   I never got into trouble, but some teachers could only see that I was off a lot and that they didn't know of a good reason.   So they would make things harder for me.   One teacher would openly tell the class what she thought of me when I was off; that I was "swinging the lead" or being a time waster, or lazy. In my computing class, if I'd been off for a few days, when I came back, there wouldn't be a seat or computer for me, so I'd get pushed about from pillar to post,   Sometimes I even got put into another class.   It was the only place I ever felt pushed out or ignored.

I am not too hard on the teachers though because it must have been hard for teachers because no one understood what was happening to me.   I didn't understand, my parents didn't understand.   It must have been hardest for my Mum as she was stuck in the middle.   She knew there was something wrong with her child but she didn't know what it was or how to fix it, yet she had to explain to the school why I was never there.   I know the truant officer or a social worker was brought in to investigate, but thankfully my Mum had been such an active parent with my two older brothers at the same school, a lot of the teachers knew my Mum well enough to know nothing sinister was going on.   But still, a lot of the teachers didn't appreciate that there was something physically wrong with me, and wouldn’t be convinced that it was nothing to do with not liking school, or being bullied.   The proof that this wasn’t just a school-based problem was that I was also missing church and guides and parties and going out with friends.
 

As well as being off school I couldn't do the things that were fun, yet people still couldn't understand that it wasn't “school phobia”.   If I was school phobic (which was suggested by the school) or had problems with bullies etc, then what was stopping me doing all the fun things, out of school?   The problem was, that when I was at school I looked fine, and of course I was able to go out sometimes so the authorities didn't see the amount of times I had to cancel going out with friends.   My mum did say at one point to the Assistant Head Teacher at the school that maybe I would be able to go to school every day, if I never did anything else, but that she wasn't prepared to do that, as it wasn't fair or healthy for a child to have no “fun” time.

We did try to keep up with school work as best as we could but it was like swimming against the tide, with no-one throwing you a lifeline, yet I struggled on.

At some point the doctor came to see me, obviously Mum had told her how often I was ill and how concerned she was, and wanted answers. The doctor asked me a lot of questions,   I don't remember a lot of them but I'm sure she asked me if I liked sports, if I liked school etc.   Then she gave her diagnoses.   She said that since I'd had viral pneumonia I would get worried whenever I didn't feel well thinking I was going to get as ill as that again, so I'd over react and stay off school.   She never used the word hypochondriac , I think she said I was "hysterical" but I'm sure the general feeling was that it was just all in my head.   Of course, because I didn't know what was wrong with me I had to believe her.   I assumed she was right and I would try my hardest to not be paranoid.   In fact I remember writing my New Year's Resolutions in English class, and I wrote something like "My New Year's Resolution is to stop worrying I am going to get ill and be at school more often and get better grades".   I even remember my teacher questioning me about it, and I told him that was what the doctor told me.   I think he said "Really?"   He seemed surprised, I think because he was one of the teachers who really believed me.  Needless to say, my New Year's Resolution didn't work.
 

I don't remember when the term "M.E." was first mentioned.   The first time I remember hearing anything about it was looking over my Mum's shoulder and seeing a leaflet about M.E. she was reading.   I asked what it was and she said she'd sent away for it, because maybe that was what was wrong with me.   At the time, for some reason, I felt angry.   I didn't think that was it, but reading the symptoms of M.E. it seemed to match up with a lot of what I was suffering from.   The next thing I remember is around my 15th birthday I had an appointment to go to the doctors.   Mum had said she wanted the doctor to give me a complete physical and find out if there was something physically wrong, and if there wasn't, if it was all in my head, to send me to a psychiatrist.   I'm sure to some young people this might have sounded frightening, the idea that they were wrong in the head and needed to see a shrink, but honestly for me I quite relished the prospect of seeing a psychiatrist. I've always loved talking, particularly about myself and I am fascinated by the psychology behind who we are and our personalities.

So along I went to the doctor and I recall she again asked me a huge amount of questions about how I felt, and about school, and about sports etc.   She took some blood samples and a urine sample and sent them off for tests for various illnesses including kidney trouble, which could explain some of my symptoms, and she said I would get the results in 2 weeks.   She suggested I was just not a "sporty" person, and that I was prone to catching viruses.   I felt patronised because by then I was beginning to realise that I should not feel the way I did.

Two weeks later I went back to the doctors for the results of the tests.    I was nervous, but I'm not sure why, or what exactly I wanted the results to be.

In fact the results were as conclusive as can be for a diagnosis of M.E.  As there is no definitive proof of M.E. my doctor ruled out any other illness.   I had no kidney, or thyroid problems or diabetes or anaemia, however the blood test did show that the coxacie B virus was still in my blood stream.   This is the virus which causes glandular fever (mono) and its existence indicated that it was still affecting my body.   So the doctor reluctantly said her conclusion was that I did have M.E., but that I would probably get over it in 6 months.   I can't remember if she told me anything else, I'm pretty sure she didn't.   I had this diagnosis, a name, and nothing else.   No treatment, no follow ups.   Cheerio, feel better soon.

However, I left feeling somewhat vindicated and happy.   Finally I had some proof that I wasn't making it all up.   I had a name I could answer with when people asked what was wrong with me.   I finally had an answer and a defence.   To finally know what was wrong with me was a relief, it was half the battle.
 

My body obviously knew this, because it was shortly after my diagnoses that I had my worst time.   It was like my body finally had permission to give in to the illness.   When the summer holidays were over I did go back to school, but I was off even more often than before.   Actually this is the period of  time I remember least about, possibly because I was worse and so the mind blocks out painful memories, but more likely it was because each day just ran into the next.

I don't remember when it became apparent I was going to be off school permanently; if this was a decision that was made, or if it just happened.   But I think about 3 or 4 weeks into the school year, I had stopped going to school at all.   As I said I remember very little about this time, both events and my emotions.   I know I wasn't depressed, I didn't spend days staring at the ceiling and crying.   But for a long time I didn't get dressed, I stayed in my pyjamas all day.   I did have friends who would come and visit me weekly, and I'd speak to all my friends on the phone often.

Quite quickly I developed a daily routine, but I still wasn't in touch with my illness, I didn't understand it or how to manage it.   I wouldn't know how I was going to feel day by day.   I didn't even seem to realise the connection between going out and feeling ill and tired.   I was still able to go out now and then with my friends but it was unpredictable.   Still, I'd often have to cancel.
 

I was under 16 and had basically dropped out of school, and  it was illegal for me not to be receiving an education.   Again, I don't know how it came about, whether the school demanded it or my Mum sought it out, but certainly around that time I had a social worker.   I never saw her, for some reason I was embarrassed or scared and would purposely be asleep when she arrived for an appointment.   Perhaps it was her involvement, but quite soon I was allocated a tutor.  She came, I think, twice a week for an hour or so.   On those days I would get up and get dressed ready for her and we'd do school work.   I dropped several subjects and just kept up with the ones I could do at home; Geography, Maths, English, Art.   I don't remember doing much work with the tutor, she would just go over what I needed to do before the next time she came.   I do seem to recall that I quite enjoyed her visits.   I always liked learning and when I felt up to it I liked writing etc., it was good to have a reason to do the work and someone to bounce ideas off.   It was also just good to have someone visit. She was chatty and sometimes told me about her home life, but most importantly she seemed to understand M.E.( I think she tutored for other children who had M.E.)

I'm not sure how long she came for but I think it was about 2 or 3 months.   Just before Christmas she told me she wouldn't be back, she was leaving tutoring and the council couldn't afford to replace her.   (She was only trained to tutor primary age children.)   And with that budgeting issue, my schooling came to an abrupt halt.
 
 

The original information Mum received that led her to believe I had M.E. came from the
M.E. Association, and after my "official" diagnosis I joined the M.E. Association and received regular mailings from them.   I also joined the local chapter but somehow was never able to attend meetings.   It was wonderful though to begin to understand what I was suffering from.   Of course, there were - and still are - no answers or explanations of the hows and whys, but to be able to identify with the other people suffering the same things and feeling the exact same feelings, was freeing.   It also made me grateful; reading about those who suffered far worse than me, who were depressed, or bed ridden or wheelchair bound. (It was mooted that if I used a wheelchair I could go out more and be less tired, but I never felt comfortable with that) I was particularly grateful not to suffer from depression, it was the one symptom I never experienced, whether because of my own personality or luck, I don't know, though this lack of symptom was a double edged sword.

The fact that I didn't have depression meant that I was disproving that the theory put forward by many doctors and psychologists that M.E. was not a physical or organic illness, but was merely a side effect of depression.   But then, because I wasn't depressed, when anybody would see me - well meaning friends and relatives or medical professionals - the fact that I was happy and cheerful made them wonder whether I was genuine or not.
Through all of this my Mum was always in contact with the school, she was a member of the school board and PTA anyway, so she was able to keep a relationship going with some of my teachers.   Via this and some miracle, I was able to sit several prelim exams, though they were all done at home.     A friend of the family is a teacher and was allowed to invigilate while I sat the exams at home.   However for the exams themselves the Board of Education wouldn’t allow this and so I didn’t sit them.   So I appealed for my prelims and ended up with a 2 for English and a 4 for Geography. Going from the pupil with the best prospects (my maths teacher said I could have sat my exam 2 years earlier and passed) to being 15 with no prospects at all.
 

After my failed attempts at Standard Grades were over, so was my education, but at 16 I was now able to claim financial help from the Government.   We discovered I could apply for Severe Disablement Allowance which is a benefit for someone who has never made N.I. contributions.   I had to have a medical, but then I was awarded it, and it was wonderful to have £40 a week coming to me.

By then I had begun to manage my illness.   I’d always known that one of the “peaks” in my day was late in the evening.   I discovered that I would always feel good or at least better at that time of day (usually about 11pm), and that if I went to bed later – after midnight – and got up later, that I slept through the night much better.  For a long time I was waking up in the early hours of the morning feeling generally ill and unable to get back to sleep, but once I changed my sleeping habits I would sleep through the night.   Also having an hours nap in the afternoon made a big difference in my day.   After the nap I’d feel good enough to shower and dress almost daily.   And if I went out, I realised if I went to bed and rested immediately, it would mean I’d feel better quicker.   Mostly common sense, but it took time for me to realise these things and I had to discover them myself.

I began to do more things in the house, write letters, paint, organise.   I was interested in things again.   TV was my best friend and because I didn’t have much outside life, weekly visits to my characters helped give me things to look forward to.

By the end of what would have been my 5th year at school, I felt so much better I decided to try and sit some Highers, with the co-operation of my school.   Around exam time in 5th year, one of my school friends took me up to the school, just for a visit.   I don’t know why she/we decided to do it, but it was a good way -when people were not in the rigid schedule of a normal timetable, rushing between classes - to just get back in touch with my classmates and teachers.   It was a huge success, for, as I said, I had always enjoyed school and I loved being in the building again.   My classmates were lovely and delighted to see me, and more importantly there were several understanding teachers who appreciated my illness and would have done anything to help me get some kind of education. They were not all like that, however.

The head of year, who had always been in contact with my Mum, tried but could not grasp that I had an illness and not a psychological problem with school.   When I went to see him myself about going into school for 1 day every couple of weeks to hand in completed work and get more to do at home.   He tried again and again to get me to commit to attending school on the same day every week (i.e. every Thursday).   I tried to explain the unpredictability of the illness, that I couldn’t say which day I’d feel up to going into school, and that the more time I spent at school, the more tired I would be and the less actual work I could do at home in between visits.   Also if I went into school once a week I would have no other life at all.  He didn’t understand and because I was never good at standing up to authority figures  I agreed to his “ideas”, but knew I would never be able to keep them up.
 

Another teacher who was taking me round the school after my Standard Grades , to see some teachers, had asked me how I was feeling, I started to explain that I was tired, but not too bad, when she stopped me and said, “No, how do you feel being in school?”   Despite all the explaining and the leaflets we’d handed in she still thought I had some fear/issue with actually going to school.   When trying to “entice” me back to school on a more regular basis they’d say “she could sit in the library, she doesn’t have to be in the big classes”.  They really had no idea about M.E. and tried to treat me as though I was school phobic or staying out of school by choice.

Despite all of this, with the backing of a couple of wonderful teachers, I attempted to sit Higher English and Higher Art.   The head of year hadn’t been supportive and some teachers turned me down flat when I proposed how it would work, but thankfully my proven history with my former art teacher meant I was accepted into art without a hitch.   The head of the English Department was also supportive and talked the Higher teacher into letting me do Higher English in my way, despite her worries I wouldn't have good enough technical abilities.

It all started off terrifically, I went in one day in the first week of the new school year and again had an amazing time feeling, and being, normal.   It was great to spend time with classmates and even good to sit in the classroom and learn.   I can’t express how much I’d missed it. My first piece of work for both English and Art put my teachers minds at rest that my standard of work was high enough, and for almost 2 months I went to school for 2 classes, one day every 2 weeks.   But 2 weeks became 3, and then once a month.   I loved the work but there was too much of it, and while I could do writing and painting well enough, I wasn’t learning enough about the things I needed to learn to sit the exams.   This was because the school and the teachers weren’t set up or trying to set the work for someone who was rarely there.   The things I was missing were being explained in class, but were not being made into notes or some other form I could get access to them.   So I began to fall sorely behind in art history and the books we were studying.   I tried, but without co-operation from teachers, who wouldn’t go out of their way to accommodate my needs, I realised, by Christmas, it wasn’t working out and I stopped going to the school and dropped the idea of sitting the exams.

As with much of M.E., trial and error is the only way to go, but this experience did have one positive aspect, it put me back in contact with all my school  friends.   In fact, I feel that was a turning point in my life, things began to improve again.   I rebuilt the friendships I had made at school, and I was invited to parties, some of which I was able to attend, and began to feel I was actually living the life of a teenager, if only be it 1 day in every 10.

By the next summer my school friends had re-established themselves in my life and I even got myself a boyfriend.   At first I pushed myself to do more than I could but a bout of illness soon let me know I was doing too much, and thankfully both my friends and boyfriend were understanding and wouldn’t put pressure on me to do more than I should.

I even began to realise if I did too much, went out more than once a week or so, I would get a bout of illness.   The illness is always the same (only varying in degree of severity), starting with a sore, phlegmy throat (inflamed tonsils), headache, aches, high fever, etc.   Followed by slow recovery of about a week.   It seems to be my body’s way of coping, it can only take so much, then it just breaks down and needs complete bed rest.   I know it’s really a kind of relapse, because though I can force myself to do more than I should, e.g. I could go out 2 days running, but I would feel pretty vile on the second day and I’d soon pay for it.   Without enough rest I’ll suffer one of my relapses.

But despite all of this I noticed – not in a day by day, or even a month by month basis – but looking back at years gone by, that I was improving.   It’s not noticeable in how much I go out, but in my level of tiredness in between these extremes.   To begin with I would go out one day for a few hours in the afternoon, then I’d come back and spend the evening in bed, and the next day in bed. Slowly recovering to an “indoors” level of tiredness, where I can go about daily life indoors without feeling ill.

Over time that “indoor life” went from doing nothing, to showering and dressing every day, to making my bed and being able to do and hour or so of some kind of mental work every few days – to being able to tidy my room once a week and have friends visit every couple of days, and I wouldn’t spend so long in bed after every outing.

So things went along happily, my general health improving in fits and starts, albeit slowly; a new life with understanding friends and a boyfriend; feeling I was living as normal a life as I possibly could.   The only black clouds, the trips to the doctors every 3 months for medical certificates to give to the D.S.S. so that I could keep receiving S.D.A.

It was hard because although my doctor, Dr. Nicol, had diagnosed my M.E. she never seemed comfortable with it.   When I went for a sick line, I would sometimes get a different doctor (as Dr. Nicol was only part-time) so I would never know what doctor I was getting and whether they were going to be sympathetic or even believe M.E. exists. But for every one I would have to tell the whole story from the start again and answer the same questions.   What are your main symptoms?   How long do you sleep?   What do you do during the day?   What would happen if you did more?

I got used to explaining it all but never got over being defensive every time.   Most doctors were fine, some were very supportive, and would ask if I’d seen a specialist.   Some didn’t seem to understand what I was talking about.   I remember one asking in a state of shocked puzzlement “Well how do you stay fit then?”   when I’d explained how little exertion tired me out.   I simply answered “I can’t”.   Was she expecting me to stay indoors for weeks on end and then just run down to the gym to tone up?

Some were completely dismissive.   One doctor in particular seemed to hate the fact that I had been given a diagnosis of M.E. and warned me against any involvement with the M.E. Association or local M.E. support groups, as they would just encourage me, as if feeding my delusion.   Often I would get a pep talk from each doctor.   They would say things like “You’re 16 now, you have to start pulling yourself together,” “You’re 18 now, you have to get on with your life,” as if they were putting up with this “fad” I was going through, but it had to end now I was an adult.

Eventually Dr. Nicol decided to get me an appointment at the hospital with a specialist in M.E., Dr. Belcher.   When eventually my appointment card arrived it wasn’t with Dr.Belcher, but one of her colleagues, Dr. Donald.   However, on the day I didn’t even get Dr. Donald but a young foreign trainee doctor.   He asked me all the usual questions, though I found it hard to understand his questions and so I think I answered some of them wrongly.   He asked the same questions about what I did with my time.  I told him I liked to write and had helped my brother write a script for T.V. and I often wrote letters to T.V. companies .   He gave me a thorough medical, took urine and blood samples, height and weight and all the usual things.   When he’d finished, he went away and consulted with Dr. Donald, who came in to deliver his conclusion.   He looked over the other doctors notes, asked me some more questions and then said. “There’s a lot of it about.”   When he saw that I liked writing he said “You’re obviously not stupid…”  the insinuation being I was smart enough to know better.   He concluded that “it was just modern living, we all get tired, there’s nothing wrong with you”, and sent me on my way.

The problem with convincing doctors was a yearly situation, as along with receiving S.D.A. came a yearly medical from the D.S.S. to decide if I was still unfit for work.   It was always tense as my income depended on this decision.   My dad would always say I should make myself really tired before going so they would see me at my worst.   However, I didn’t want to do that, I wasn’t prepared to make myself ill even for that, and they SHOULD see that the way I was everyday, when I was feeling “normal”, I was still unfit for work.

Again, it was a hard balancing act, though I always told them the truth when they asked about what I did in an average day.   Though, anything too positive - for example if I said I could write or read for a few hours- would be taken to assume I could return to work or study.    But if I underplayed what I could do then they would read into it that I wasn’t trying and I wanted to sit around the house and do nothing.   They also encouraged me not to have anything to do with the M.E. Association.

As these medicals were yearly, I would get different doctors.   It seemed to me, most of them had made up their minds before I arrived about whether they believed me or not (or believed in M.E.).The problem was, the tests they gave were not helpful in proving or disproving whether someone with M.E. is capable of work.   They didn’t take into account the nature of M.E. and how it affects the sufferer.   The medical tests only showed whether I was capable of meeting the requirements of the tests on that day. Could I walk up the stairs adequately?   Could I bend and stretch?   See and hear?   Talk for myself?   Of course I could do all those things for the 30 minutes or so of the test.   In fact on any given day I could probably muster enough energy to go someplace and perform tasks adequately for 30 minutes.   The problem comes in SUSTAINING this level of activity.   The longer I did it, the worse I’d become.   The more tired and weak my muscles would become, the shorter my concentration would become until I’d find it difficult to be coherent or lively.

That was the problem, these medical staff can only judge you for the short time they see you, which is fine if you have an obvious disability, like a bad back or arthritis or a sight impairment, but not for M.E.   So I wasn’t overly surprised when in 1995 I received a letter saying that the Adjudicating Officer had declared me fit for work.   I immediately appealed, particularly when, along with the letter telling me my S.D.A. money was being stopped, I was sent a list of jobs that the Adjudication Officer felt I could easily do.   They included office jobs, such as filing clerk and library assistant, and most ridiculously , shop sales assistant.
None of the tests I’d received at the medical examination tested whether I could perform this job, and all my verbal evidence showed I could not:  I couldn’t stand for several hours at a time, move and arrange stock, and perform quick mental tasks under pressure for long hours.   It was simply ridiculous.
 

When I received the papers for my appeal it was illuminating to see what both my own doctors and the doctors who had performed the medical examinations on behalf of the D.S.S. had written about me.   The speed at which they had drawn their conclusions was shocking.   One doctor had written “She is a little overweight but she moves about the room briskly”   That was never in question.   I remembered that occasion and realised, when the doctor had called my name, he quickly vanished, and I rushed to keep up with him, to see which room he’d gone into.   I couldn’t believe he’d made his entire judgement on that.   It was clear many of these doctors didn’t understand the nature of the disability.

However, I felt I had a great deal of evidence to support my claim.   Firstly the booklet issued by the D.S.S. about the all work test they use to decide your ability to work, says, “This doctor will consider your ability to carry out a range of work – related activities over a period of time and not just your performance on the day of the examination.”   Which, clearly, they hadn’t done.

Also the Adjudication Officer’s submission included a paragraph which said “A person should not be regarded as capable of jobs including part time work which he could only do irregularly or unpredictably”   All evidence points to the fact that I couldn’t possibly do a job – even part time – and attend consistently.
It seemed that the whole cause of the Adjudication Officers decision that I was fit for work, was not the medical examinations I had from the D.S.S. – though for two years both medical examiners had considered me fit for work.   The odd thing which happened was that in 1993 when asked by the D.S.S. one of the doctors in my practice – the one who said I should pull myself together – gave his opinion to the D.S.S. that the fact I had been receiving sick lines was “deplorable” and he strongly suggested the  D.S.S. encourage me to go back to work or education.   That year, the medical examiner agreed with this decision, but the adjudication officer decided I was still unfit for work.   The next year a different doctor gave his opinion that I was “deemed unfit for work now and in the near future,” but the medical officer disagreed with this and declared me fit for work, which the adjudication officer upheld, even though there was less evidence that year than the year before.

The day of the tribunal arrived, I had been provided with a Social Worker who would help present my case , and I brought along my parents, as I didn’t know what to expect.   It was actually a far less frightening encounter than I imagined.   It was simply a room in which sat the 3 people who would decide my case (one would be a doctor) and on the opposite side of the table, myself, my social worker and an adjudicating officer who would present the case for the opposition.   It is normally a completely random officer, but by coincidence the adjudication officer on the day was actually the same one who had made the decision about my case, which immediately put me at a disadvantage.
His evidence on the day consisted of the fact that I had not received any sick notes since the decision was made, and that the doctor had used the word “deemed” which meant he didn’t actually believe it, just that he didn’t want to disagree with his colleague.   When we argued that I had not received any more sick lines because I didn’t ask for any, the officer suggested a doctor would know to keep issuing them, which was disputed by everyone.   After that, his entire defence hung on the meaning of that word “deemed”.   After much arguing and more discussion of my symptoms they retired to make a decision, they decided to adjourn for more evidence. They wanted a letter from the doctor explaining what he meant by deemed, and why I hadn’t received any more sick lines, and what the outcome a “review” one of the doctors mentioned had been.

I was annoyed I’d have to wait even LONGER to get a result, but it was better than a flat out no. I got a date for the second hearing a couple ofmonths later, and this time I was prepared. I wrote my won defense, because I knew I had all the evidence to counteract all that had been said by the Adjudication Officer in the first hearing. However, as it turned out I didn’t need it. The presenting officer (adjudication officer) was a different man, and it seemed like he was completely on my side, and I didn’t have to defend much. He agreed, and I won the tribunal and won back all the money I’d lost, and was declared unfit for work.

I still had to hand in sick lines, but before my tribunal Dr Nicol had said she’d support me but she didn’t think I’d win. Once I had win, it seemed to satisfy her and she was always much more understanding of my illness after that.

Then sometime later I received a letter telling me that because I had been receiving SDA for a certain length of time, I no longer required sick lines formmy doctor, I just automatically get it, which was a huge relief.

Having guaranteed sickness benefit was a big weight from my shoulders, it gave me security, and finally I felt there was really nothing complicating my illness. And so since then my illness has gone on in a steady rhythm, slowly improving year after year. I was even able to do a couple of courses through open learning (designed for someone like me in mind) and gain a couple of qualifications.

8 years ago I would go out once every 10 days or so, then spend a day in bed then slowly recover. Now I can go out once every 7 days, and the next day feel very tired with a headache, muscle pain etc but still be able to get dressed, and do something that doesn’t take a lot of concentration. I can work for a couple of hours at the computer, and occasionally during each week take a little trip in a car to the shops for 30 mins. I still have bad patches, where I’ll have several illnesses or relapses, but it’s 2 steps forward one step back kind of situation. The Irritable Bowel Syndrome has improved, and I am now able to judge my body, and know when I’m tired and need to rest, or when I’m in danger of doing too much. All the symptoms are still there, I am far from healthy (On the M.E. scale I would say I’m between 60 and 70% healthy)  but I am able to look back and see my improvement and now that there is hope for the future. Like the tortoise I may be slow but I’ll get there in the end – and I have just as hard a shell.