THE BEGINNING
So you want the details huh? Good for you but I warn you that I am notoriously detail minded so I hope there will not be TOO many details and will do my best to keep from rambling too much. One aspect of the way the disease affects my brain is that I can’t control the use of information as concisely or in any organised way any longer. I can merely type what I think at that moment and this does lead to tangents and rambling so I apologise up front should that occur. Hopefully a friend can edit out any really bad examples before uploading!
It is impossible at this stage to go back and be 100% sure of the causation of the disease in my particular case. I have had it a very long time now and there has been very little proper ‘M.E.’ research. Most of the accurate information we have dates before the invention of CFS and the following propaganda campaign. For more info on what M.E. is (and is not!) and the confusion with CFS and Fibromyalgia etc. then please click here or use the M.E. tab in the navigation bar at the top. With that information there, I am not going to repeat too much of it here but instead concentrate on how it has affected me, what my story is.
Although we cannot be conclusive about the cause, we can have a very strong suspicion and for me this came together when I learned of the links between M.E. and Polio. The original polio vaccine was a ‘live’ one, meaning it had a tiny amount of live virus in it. The concept was for this to be too small to be able to cause disease but enough to trigger the immune system to create antibodies for it should the body be exposed to a more dangerous dose. These days alternatives are used but I was vaccinated back in the 70’s when it was still live vaccine and my health was immediately affected.
Polio is actually not caused by a single virus but at least 4 or 5 viruses from the same family. This family has at least 90 KNOWN viruses! The likelihood is that either some of these viruses may have mutated through the vaccine process or that M.E. is caused by other similar viruses from within the family, either known or as yet unknown viruses. There are other theories, including that one of these (or other) viruses initiated the disease and thereafter it has been the body’s inappropriate response that has prolonged illness as well as other possible non-
For me, I had my original vaccination at 6 months old and until then had been very healthy despite a slightly dodgy start! All the firstborns in my mother’s side of the family had either miscarried or stillborn so when after a long and difficult labour I arrived not breathing my parents thought the worst. Unable to stimulate breathing in the first minute or two, I was taken from the room to use something called a ‘hotplate’ (haven’t researched what that actually is!) and it worked. I was brought back to relieved parents who had no idea what parenting this tiny bundle was going to mean! I was the first firstborn to survive.
THE ‘BUNNY’ RACE
Following the first vaccination I was diagnosed (still at 6months) with a “spastic colon” due to severe constipation. These days it is one of the conditions that comes under the label of IBS. For much of my life I had thought I was born with that but apparently it didn’t start until the same time as the vaccination. The only other sign that things weren’t right was a reduction in my immunity. I was prone to catching everything and anything and it wasn’t unheard of to have more than one at a time! I even managed to get whooping cough despite having had the vaccination for it!
Other than those two things, as far as anyone could tell, I was a healthy and very active child. I’m told I would play football with my dad and someone told them I would be a pro one day because I had “footballer’s legs”! I certainly had some sporting ability and was used to winning little races at school etc. I don’t actually remember the winning but I do remember the expectation of winning when a loss signalled that all of this had changed.
I was 6 years old and had recently had the polio booster vaccine. I had also been on my first major trip abroad (travelling the west coast of USA into and out from both Canada and Mexico) and had been unwell during the visit to San Diego with what was thought to be Chicken Pox and had received some unwelcome attention from a tick at some point on that trip. The relevance of the latter became clearer years later.
As for this turning point (in my memory of events that is, of course, and I WAS only 6 at the time!), it was school sports day and I was racing in the “bunny race”. It involved putting hands on ground ahead of you and bunny hopping your feet forward to your hands, moving hands forward again etc. to the finish line. Not exactly the Olympics but typical fare for 6yr children in school sports days of the era.
I remember the shock, fear and confusion I felt as I cried to my mother after the race when I had been beaten (something I didn’t seem to have been expecting and neither did anyone else, which is how I found out I had been good before then). It wasn’t losing that caused such a strong reaction in me (although I am sure I wouldn’t have taken that well either way given how crazily competitive I was!), it was the nature of the loss. I wasn’t narrowly pipped into second or third place, I wasn’t even ‘only’ last but I finished a long way behind the slowest of the others and I did not understand. My mother comforted me with the reassurance it was just a temporary blip caused by how unwell I had been shortly before that.
I was comforted that day but neither of us knew it was not a temporary blip and my muscles never responded the same way again. I could walk and even run but I was forever a long way behind the slowest until I couldn’t do those things at all. I remember at about 10yrs old trying to run a cross country and feeling yet again that there was a disconnect somewhere between my brain and the muscles. I had long since forgotten that I had once been fast/good but I still knew instinctively that something was wrong but I didn’t know what nor could I put my finger on something specific to complain to doctors about. Little did I know the disease my body was almost certainly already battling and this was one of the consequences. In hindsight it makes perfect sense given what happened later but for a number of years I kept pushing, kept trying and even had some success where running was not required (i.e. netball shooting) but knowing something wasn’t right.
CHANGING SCHOOLS
From that time forward (6yrs) I developed new symptoms every year. I started seeing specialist doctors from the age of 7 and was described at the time as turning from an active sporting lively child into a “pale mouse” when I was 6. Throughout the following years I developed stomach ache, sore throat, joints that would turn in and give way, allergies, asthma and so on. At the age of about 8 I spent my first night in hospital while they gave me a series of enemas before bed and first thing in the morning to try and improve my stomach pain, thought to be due to constipation due to the spastic colon. There was some relief to start with but nothing substantial and nothing that lasted.
My immunity was further weakened and infections would last 2 or 3 times longer for me than for everyone else and I caught some weird viruses! Some of the illnesses the doctor would struggle to name but it was clear something was going on with the clear signs of infection, often involving a rash as well as fevers etc. I began to struggle to recover from these infections and began having what were labelled “post-
In 1987 I had yet another nasty infection, this time while in France with the school but, without going into all the details, the degree to which I was unwell was not recognised by the staff members enjoying their time in France despite my parents informing them of other family members with the same infection and that my baby sister could end up in hospital with it. I was not the only sick student who was not helped as much as maybe we could have been so the treatment I had was not personal. However, on return to England I was told that I would not be included in the reciprocal visit from my penpal/host and that DID seem personal. I never did get an explanation that made sense.
This followed years of bullying and poor education and so this was a last straw and I jumped at a chance to leave the school. My younger sister was having her own issues and these were an even higher priority than what I was going through so the result was we were both removed from the school and joined a private school about 20min drive away.
The first few months at this new school were amongst the best health I had experienced despite it being a stressful time. I loved the opportunity to really learn and work towards what I thought my future would be. I was out every evening doing some activity, often associated with either music and/or the church. The main problem was my asthma was not well controlled, especially with exercise, and the timetable at this new school meant that I had a maths class immediately after an exercise class and I was usually one shade of purple or another for that maths class and not at my best!
This would have been a problem anyway but was even more so as I joined the top group class and had quite a bit of catching up to do from my poor education the previous 3 years. There wasn’t much time to catch up as I was due to join this class taking the Maths G.C.S.E. (General Certificate of Secondary Education) at the end of the year. This was a year ‘early’ (these exams were usually done at the end of compulsory education aged 16) and also the very first year these exams were being run having taken over from O-
CAREER PLANS
I was referred to a respiratory specialist who probably misunderstood my wishes and thought that signing me out of all sports related classes at school would solve the problem. I think he thought that I would want that when the truth was that as much as I was struggling with any running (more and more as the years had gone on), I loved the more skill based sports like netball and had not been looking for a way out. However, it did solve the immediate educational problems.
As it happens, this became part of a scenario where it seemed that God was clearly leading in one particular direction. Like most children, especially driven children, I had gone through a variety of different ambitions for when I was ‘grown up’ from being a missionary teacher in Africa through to Accountancy (because it paid well and I was good at maths!). The last of those was the shortest lived because I was never motivated much by money but I didn’t think I had what it takes to do what I really was discovering I wanted to do – medicine!
When the mistaken belief that you had to be a genius to be a doctor was eliminated from my thinking, that became my goal and I believed it was the direction God was leading. The problem was that my science education was also lacking and especially in chemistry (and physics but I could do maths instead of that). I chose my school subjects with medicine in mind (English students usually specialise in school subjects at age 14) but when I joined my new school peers in Chemistry classes I was lost.
Because of the belief medicine was where God was leading me, I struggled on for some weeks with the chemistry but I felt like I was trying to learn Greek while in a Japanese classroom – I didn’t even understand the language I was being taught in never mind understand the subject! It came to a head with some homework that I had no idea where to even begin and my parents, both of them business not science experts, had no way to help me. It was clear I could not continue and I was transferred into Computer Studies instead. It looked like the end of my chance to pursue medicine before I had really got started.
This was the context of being told I could no longer do sport or physical education classes. As it happens…(!) the chemistry teacher had a free session during my new free time and the year behind me had their class during this time as well so I began having one-
COMPETITIVE TO A FAULT
The other tangent I want to run along briefly in regards to this decision to sign me off physical education due to my exercise induced asthma, took place some 8-
When the competition came round, however, we were still a player down and somehow, don’t remember the details, I ended up playing 2 positions with a Goal Attack bib as well. This position involved a lot more running and also meant I had 2 defenders against me! This event was some months after the official onset of my illness (back to that in just a moment) so I had also been told not to do any sport for 6 months following that. I just thought I could put up with the breathing difficulty for limited time on this one occasion to serve my team! Of course, being a tournament with 4 ‘houses’, this “one occasion” was 3 games one after the other!
The consequence?...when the other players (and presumably the staff) saw me doubled over with difficulty breathing they all assumed it was asthma and left me to it but there was more to it. What no-
With no-
My extensive medical reading in preparation for my future training (I believed at the time)meant that I realised fairly quickly that the nature, location and experience of the pain plus the sudden complete disappearance of it about 15mins after stopping the exercise all added up to it having been an angina attack. What didn’t make so much sense until fairly recently was why I would have an angina attack aged 15. I was sure no-
THE LEAD UP
Going back to the months after joining the new school the previous autumn and the busy but stressful period of time. In addition to changing school & being so busy it was during this time that both paternal grandparents died, a toddler sister was hospitalised with asthma and my father was taken very ill with Glandular Fever (mononucleosis for my American friends!)putting him out of action completely for a couple of months and complete recovery took several years.
In addition to everything else, I helped mum where I could and that included the shut down/lock up procedure for their launderette business each night. I worked Saturday mornings in the same launderette. It sounds like it was all too much but at the time I only really noticed a constant sore throat but otherwise felt like I ‘thrived’ on the stress and loved the responsibility.
Within myself I felt better than I had in a long time but it proved to be short-
It was January 1988 and I was far too busy to get sick! I remember a conversation to that effect with my mother sat in the car having just returned from shutting up the launderette business for the evening, something I had been helping her with since dad had become so unwell. Mum admitted to me her concern about the possibility of her catching the illness from dad and that she couldn’t afford to get sick too. With 3 businesses and 5 children, 3 of them very young (ages 18months to 5ys old!) she was having to keep everything together largely by herself with whatever limited help I could provide so the idea of her becoming unwell too was unthinkable.
I agreed with her but also told her that I couldn’t get ill either because I had my mock exams mid-
ONSET
Along with the rest of my 4th year maths class I began doing mock G.C.S.E. exams in the subject with all the procedure as if they were the real deal. Mocks were always a chance to see how ready the students are and what areas need more work before the real exams some months later but in this case it was also a chance to see how these new exams work for everyone concerned. One of the new features was the addition of 2 oral exams in addition to the written papers. It depended what grade you were aiming for how many of the 4 exams you would do. The first exams would get you up to a highest of a C grade and the follow up exams was optional and for those aiming for the A to C grades. Naturally, being the top class and doing the whole thing a year early, we were doing all 4 exams.
The oral exams were a new concept for us and were 15 minutes long each with a short gap between them. The teacher read out the questions to us and we had to answer before she moved on to the next question (unless you had an exceptional memory!). It was all mental arithmetic. Maths was the only mock exam I was doing because my English class had been withdrawn from doing the exam early (I was the only one with enough written work to standard!). I was going to do Music a year early as well but I was the only one in my class to do that so mocks weren’t done.
The first written paper went without anything to cause me to remember it and it was time for the 2 oral exams. It was a Friday afternoon in Jan 1988 (don’t remember exact date) and the first oral exam also passed without incident. However, during the 15mins of the second oral exam I was hit with an overwhelming exhaustion as if I had been hit by a truck! I was literally being held up by the wall of the classroom by the time the questions finished having felt nothing unusual when it started. It was as sudden as that!
I was confused but mostly just too tired to do anything but concentrate on how I was going to get to the school bus! As vivid as the memory of the onset is, I remember nothing of the rest of the day/evening beyond trying to force my body to trudge out to the bus. I do remember dragging my body to work the next morning, (I was still working Sat mornings at the launderette) but that I was incredibly slow to move and it felt like I was trying to walk through setting concrete.
It was the next day, Sunday, that the severe headache, fever and other signs of severe infection began. By the evening it was so bad that the doctor was called out with meningitis suspected. I was provisionally diagnosed with the same Glandular Fever my dad had been fighting. Until the Sunday night I had been determined I still had to be at school on Monday for the final maths paper! I asked if it could be sent home for me when I couldn’t go in but everyone else had a much more realistic idea of the relative importance of a practice exam versus my health than I did.
Having said that, although I did miss that exam and was off school that Monday, I only accepted another 2 days off and stunned the school staff when I turned up on Thursday! “I thought you had Glandular Fever”, one teacher told me looking very confused. “I do”, “Then what are you doing here?!” That was not the last time, by any means, that a teacher questioned why I was at school and in later times I was even told off for being there. I must be one of very few, if not the only student told off for coming TO school!
HERE AGAIN…GONE AGAIN…
I only lasted the rest of the week before being off school again the following week and so began a pattern that continued throughout the rest of that school year. In March my sister (also a teenager not one of the youngest) developed a very severe throat infection covered in ulcers. She too was diagnosed with Glandular Fever at that stage. Dad had tested positive for the Epstein Barr virus (that causes Glandular Fever/mononucleosis) but both my sister and I tested negative. However, our diagnoses stood because the test is believed to be reliable only if it gives a positive result and a negative doesn’t necessarily mean anything! It has, however, given room for some questions in hindsight over whether it really was that or something else that was misdiagnosed because of the timing in relation to dad’s illness.
One significant possibility is that it was actually a post-
With two of us girls now both having Glandular Fever diagnoses and with my lack of recovery still, it was decided to keep both of us off school for several weeks up to and through the Easter holiday break. Hopefully that would give us both time to recuperate properly and return at the start of the next term healthy and ready to go. I remember those weeks as being relaxed and I wasn’t conflicted about the time off. I remember us playing hangman and guess who and the like in the living room, something we never used to do on a regular basis but with us both unable to go out we were probably as close as we had been for quite some time as we kept each other company and entertained during our quarantine.
When we returned to school everyone now expected that we would be recovered. My sister still had some struggle with post viral fatigue for a while but did get better while I did not. The severe headache that had begun that Sunday in January had become a little less severe most of the time but it never left and remained pretty bad most of the time. 26 years later and it remains my constant companion! It continues to vary from day to day and within the day and can still be very severe but it is always there in some form. During the early few months I also showed other brain related symptoms such as losing my words and severe pain and dizziness (almost passing out) with any loud noise or sudden movement. I was sent for a brain CT to rule out the possibility of a brain tumour. The good news was that I finally had proof there was a brain there!
EXAMS
Most of the following months were a mixture of trying to force my body to resume normal activities and continue with my education and exam preparation together with increasing symptoms and referrals to different doctors/specialists. I had no idea that the disease I had had such a strong requirement for proper rest in the early stages and that this would have a big say in how the disease progressed. There is still a lot of unknowns about true M.E. but one of the factors that is well proven is that those who rest properly in the early stages, for as much as a year or two if needed, will do much better longer term and some can even gain a measure of recovery when this is done. I had no idea about any of this and did the complete opposite! I still do!!
When the school year was coming to a close I made it to my exams despite actually throwing up in the morning of two of them (I was even more prone to additional infections and had a stomach bug). I remember being somewhat annoyed with the minibus driver when he told me off for being late out to the bus. I wanted to tell him that I had been ready in time, as I always was, but had been forced back into the house to be sick but if I had told him that he would have sent me back in and I would miss my exams! What annoyed me was that other students were regularly late or only half-
I had both my music and second maths papers that day, one in the morning and the other in the afternoon and I still remember trying to fight off the nausea throughout the assembly knowing I could not risk being sick again. I knew I wouldn’t be able to hide that and I was sure I would be sent home if anyone knew how ill I was. I was grateful that I don’t throw up easily (that can be a good thing or a bad thing depending on circumstances!) and I was very grateful that the strength of the nausea improved through the day so although it was a significant factor through the music exam in the morning, it was much less so for the maths paper in the afternoon. My biggest memory of the latter is of drawing a graph the wrong way round on a late question and having to undo/redo a list of questions based on that graph when I realised the mistake with just minutes of the exam left!
There was another section of the exam still to go but there was a note ahead of it saying something to the effect of “we don’t know how much to expect students to get through because it is the first running of this new exam so the following section may not count if enough students don’t reach it”. If I had not drawn the graph upside down then I would have made it into that section so thought others who weren’t making such silly mistakes would get there. I was also concerned that I had discovered this mistake but what else had I done equally silly that I had missed?
I made it out to the bus for the journey home exhausted but satisfied that I had made it through the day despite the odds only to find the matron and others fussing over my sister who was also now showing signs of the same stomach bug. I seem to remember the matron telling me she was unwell and to make sure she is ok/look after her until we got home or something like that. I just nodded and still said nothing about my own battle with the bug that day!
HORIZON
Like most schools, there was a week of ‘work experience’ arranged at the end of term (semester -
I loved it but found it ever so hard. My stamina was reducing all the time, as was my strength and walking around the hospital took it out of me in a massive way. I was beginning to struggle putting one foot in front of the other. However this experience proved vital for an unexpected reason. The week consisted of tasting everything from Medical Physics to Occupational Therapy and included 2 days on 2 different hospital sites of Physiotherapy and it was one of these days where the physios gathered together for a group meeting. I had the sense it was something they did regularly but not sure how often. This time they were going to educate themselves by watching a TV documentary from the night before. It was a ‘Horizon’ documentary and was on the subject of M.E.!
Until that meeting and seeing that show I had never heard of Myalgic Encephalomyelitis but I was stunned as I watched the show. They featured 4 people with the disease and they were all struggling more than I was at that stage with mobility so that left a question in my head but deep down I just KNEW this strange disease was what I had. It was why I hadn’t recovered from that Glandular Fever (as I understood things at the time). There was an incredible sense of relief that I wasn’t going crazy and there was an explanation, a real illness that fitted with my experience.
Little did I know how M.E. would be hijacked by scandal and propaganda but for that moment I was just overwhelmed to have an answer and amazed at the unlikelihood of me being in that particular physio meeting where they happened to show that particular documentary! I did not tell anyone there about my recognition of my own disease but it was the first thing I told when I got home! Approximately 6 months into my full deterioration and I now had a name for my illness. It was confirmed as a diagnosis by a private consultant (doctor) a short while later. Neither I nor any of the doctors seemed to know anything much about it though.
NO IMPROVEMENT
I was working through the summer at the nursing home my parents ran still trying to fight my decline by trying harder. It was while I was at work that my exam results came in and I am guessing they must not have counted that last section as I came away with a Grade B in music and an A in maths. At that time ‘A’ was the top available grade. I was shocked!
I was certain I would be fully recovered by September (despite the diagnosis) and the start of the final year of compulsory education and the year when I would be doing most of my exams. Any other possibility quite literally didn’t cross my mind but as one day passed to another and week to week without improvement it was suddenly September and, if anything, I was worse not better!
I continued to have medical referrals looking for some treatment option that would work and although I had the M.E. diagnosis this was questioned for some time before acceptance. I was sent to a psychiatrist who commented on my lack of agreement with Freud but said I wasn’t the only one, even non-
As it happens, this other doctor was also a psychiatrist but I was reassured that he had been seeing a lot of M.E. patients due to the common practice of referring us to psychiatrists when the obvious diseases were ruled out and the most basic tests either came back ok or didn’t spell out something doctors were very familiar with.
In my opinion/experience, Medicine has deteriorated from doctors being medical detectives to most of them being little more than robots controlled by computerised test results. To be fair it is largely down to a failure in education (doctors were taught for a long time to identify diseases in boxes and to therefore put patients in the right box so if there isn’t a known box then you get scenarios where patients are forced into the wrong boxes by any means possible and I suffered from that in times to come) and also a limitation in both funding and time. We are blessed now if our GP has a full 5 minutes to spend with us and so they just don’t have time to do more than the basics and anything more complicated, more unusual etc., and problems happen. I’m sure this must be frustrating to some of the doctors involved as well and I’m equally sure there are some amazing doctors fighting within the system but too often these are not the doctors I have met.
SUNNY DAY
Going back to this psychiatrist who was seeing all these (so-
It is not practical for me to list every sign and symptom that I had developed by then, or went on to get, but one of these diagnosed when I was about 8yrs by my optician was photosensitivity. I remember him showing my mother how my eye would turn away from the light and he was telling her it was not something I could control (so I wasn’t making it up or putting it on!). I had worked hard not to let that take over and become so intolerant I could not see in normal lighting so that meant I would only protect them with sunglasses in the very brightest of conditions. That day in that office was one such occasion when I had no real choice but to keep my sunglasses on even though I was technically indoors.
I have explained all that despite it probably seeming obvious to most of you because so many assumptions were made because I was wearing those sunglasses and he didn’t ask me about it. Had he just asked I could have pointed out how bright the light was from where I was seated! However, instead he took this and the fact my mother did most of the talking (not because I was incapable but because she could remember the information better than I and we wanted to be accurate), and he interpreted these things to mean that I was being made ill by my family, especially my poor mother, and that I was very disturbed and needed immediate inpatient treatment!
He decided I didn’t have M.E. because I wasn’t a classic example of it based on his experience (in hindsight it is easy to see that he had no experience of genuine M.E. just a subgroup being mislabelled that way. For more on this click here). If I had wanted to pretend to have a disease I would not have picked a badly known, regularly misunderstood one for a start and then I would have made sure that I was an exact example of the disease I was replicating! What is the point in pretending to have a disease and then acting it out differently?!
My appointment with Dr. B was just one hour and included him disappearing for a while without explanation until he came back and told us he had found room in his ward to have me taken in immediately!! He wanted me to be taken away from the family and all luxuries and I would be able to ‘earn’ privileges by performing goals they set for me. It was clear he had decided my illness was behavioural and had totally missed both me and my real issues and he had made those decisions purely on my wearing sunglasses and letting mum do most of the talking!
REPERCUSSIONS
This visit may have been just one hour but the repercussions lasted many years and led to some horrendous situations. Years later I had the opportunity to read through my medical notes and when I reached this part I read about discussions that had taken place between him and my family doctor about wishing he could go to court to get me taken away from my parents but I was just too old for that to happen (it happened to others – one young man this happened to was later tipped into a hydrotherapy pool despite being paralysed because his doctors thought he would move his limbs to save himself and prove that he could, except that he couldn’t and they had to dive in to pull him out!).
I also read of conversation(s) between this doctor and a so-
On one page it stated the belief that my condition was really a form of depression not M.E. because I was clearly so upset. Literally the next page it stated that it was not real but psychological because I was too content for someone who was genuinely that sick and the following page labelled me as psychological again but this time it was because I showed no emotion either way! It was clear that these judgments were being made regardless of anything I was doing or presenting and I wasn’t therefore responsible.
It also became clear why one doctor after another had decided I was either behaving ill or had major psychiatric psychoses. At the time it was a source of both confusion and concern that different doctors were all labelling me in such a way. Although I knew in my heart that I was not the person they were trying to make me out to be, I was a teenager who had not had a chance to prove to anyone, including myself, who I was/am. Add to that the way the doctors tried to justify their mislabelling (forcing me into illness boxes that I didn’t belong in).
Where there were symptoms and signs that didn’t fit then these were dismissed as not being real and where I didn’t have the symptoms and signs required for the box of their choice then these were there and I was in “denial” to suggest they weren’t! The trouble with abusing the concept of “denial” is that there is no defence to it. You can’t deny denial! By its very nature, if I was genuinely in denial then I would not know it so how could I know if anything was real? This was one of a number of ways in which they messed with my mind and caused me many problems and much emotional suffering.
PLYMOUTH NEUROLOGIST
In fact the reason why so many doctors went this route, aside from the institutional bias to force patients into boxes regardless and also aside from the increasing media propaganda campaign against M.E. (more on that in the article about the disease and its history found here) but whenever I had been referred to these doctors the assessment of Dr. B had been included and I was presented to them with something along the lines of, “we think she is a psychiatric case but just in case would you check her out to keep her and her family happy”! These doctors already had their minds made up before they even met me.
A good example of this was when I went to see a Neurologist in Plymouth (about 90min drive away in the next county). I was hopeful about that referral as we were finally moving away from the psychiatrists and to a speciality where maybe there could be some real help. He had me sit on the examining table/bed and tested my knee reflexes and possibly the ankles and that was it. From that he determined I didn’t have M.S. and therefore it was all in my head! He too wanted to admit me.
He told me of the same routine as Dr. B had wanted to do…i.e. have everything stripped away and I would have to earn back privileges from the right to have a book or similar to being allowed a phone call with family etc. I would ‘earn’ these by achieving targets like walking the length of the ward etc. It was all behavioural and the only difference was that they would do it in a neurology ward rather than a psychiatric one! When he could see that we were not buying it the doctor told me of a woman somewhere in Plymouth in a wheelchair who didn’t need to be but she would always be because she refused his help and if I didn’t take his help them I too would be in a wheelchair the rest of my life! I was about 17yrs old and completely devastated!
MEMORY
Going back a bit to where I digressed into the series of medical visits, I went back to school in September 1988 still getting worse not having made the recovery everyone expected by then. I settled back into a similar routine as before although I was at school a bit more often working towards the remainder of my end of school exams. I was gritting my teeth and pushing through as hard as I could hoping tomorrow would be better and in a short while I would finally recover and continue the journey to medical school, which I still believed was God’s calling to me despite my experiences at the hands of some members of the profession.
In addition to the conventional medicine appointments, I was also beginning to see a variety of different alternative practitioners as well. We tried everything from Homeopathy to Iridology, from connecting my wrist to the radiator to neutralise electricity(!) to Herbal, from Applied Kinesiology to Acupuncture and Chiropractors. The latter sometimes provided some short-
One of the biggest struggles that year academically was the increasing way in which the illness was affecting my brain and most notably my memory. During my holiday work at the nursing home it started impacting on daily life. One such example when it first struck me that this was becoming more serious than ‘normal’ forgetfulness was early in the shift when I was taking breakfast trays from an upstairs mini kitchen to the residents. I took the 2 trays together with the instructions about which rooms to take them to, took a couple of steps along the corridor and had already forgotten where I was going.
Happening once would be frustrating but no big deal but it became constant that I could not remember what I had just been told. I had to try and work out what I was supposed to be doing or where I was going from watching everyone else as the other staff did not have the time (or patience!) to keep repeating to me what I was forgetting. This, naturally, together with the increasing difficulty with concentration, focus and general brain fog was making it hard to keep up with schoolwork, especially to the standard I needed for medicine. I had to explain to a new teacher that year that I was not being silly when I could not remember the shape of a peanut!
I would have said I had no confidence in my ability but that is not strictly true because I knew I had the potential to achieve good results or I would have expected myself to be bottom of the class and I did not. I think it was more that I didn’t believe I was as capable as I wanted to be even without the illness complications! The teachers always had far more confidence in my ability than I did but they were concerned about the cognitive impact of the illness and how much that would impact my results.
One teacher warned me of “the law of diminishing returns”, concerned that the more I was pushing myself, the harder I was trying, the worse I was getting and the less I was likely to get from my exams. It was not uncommon for teachers to be encouraging me to stay home and rest but I was determined to get the best results I could and had no confidence I could do that if I was not at school working as hard as my body would allow…plus a bit!
CHRISTMAS ALBUM
One big distraction from the struggle during the first term was the opportunity to take part in a national competition to raise funds for teenage leukaemia. The concept was to gain £10 sponsorship from a local business and then multiply that up to £100 in any way we chose. There were prizes for different categories of fundraising from music to sport to events and also for different age groups. Myself and a friend spearheaded a team sponsored by a local newspaper (so we also got free coverage!) and we recorded a Christmas album (on cassette tape in those days!). One teacher had a contact that gained us the use of a professional studio and a number of other staff and students took part in a very mixed bag of Christmas music. We had traditional carols and contemporary hits, medieval recorder music to original songs!
We raised the funds by selling this album and ultimately I believe we raised over £700, which was sent in together with a report on our activities. Some time later we were shocked to discover that we had won the entire thing, not just one of the subcategories but the top prize in the competition! This led to a trip to London with the 2 staff members most involved to an award ceremony at the Houses of Parliament attended by celebrities as well as politicians and where we collected the prize of a video camera for the school. Life was not all bad by any means!
AMERICA
At the end of the year I took my exams along with everyone else, minus one. Concerned by the amount of homework I was facing in general but from one subject in particular (history), my parents spoke to the school and told them it had to be either traditional homework or coursework each week in history and not both at the same time when I had four other subjects to do as well. My peers often didn’t bother with doing the work but I was too conscientious for that and it was too much. I did not get a say in any of this, including when the decision was made that I would be dropping history! As my health declined, however, it proved useful to have free time to put my head down and rest during what would have been my history classes.
I went back to work at the Nursing Home again for the summer, or for the few weeks before we were due to have a big family holiday to America. The final week I was working I became very unwell with another infection of some kind. As usual I tried to keep going despite how unwell I clearly was and eventually even those staff who didn’t like me because I was the bosses’ daughter became sympathetic and started to see me as a person in my own right rather than an extension of my parents. I mention this not so much because of how I was affected then but what came a little later.
I seemed to recover from this virus (or whatever it was) just in time for our trip to Florida and joined my family on the trip looking forward to what we would get to do and see. We were there for 4 weeks staying in a rented apartment and another family was joining us for 3 weeks with the middle week of their trip spent in another part of the State. On the Friday before they left we were all at Typhoon Lagoon, a water theme park, and I was on a ring going round the lazy river when I was tipped off and felt a painful jolt in my neck. I was very unhappy with the person who had tipped me off!
I left the water and it wasn’t long before my headache was worse and I felt generally bad. I was still thinking it was being knocked off the ring but on feeling my head my mother realised I had a temperature and had another infection, or more likely a recurrence of what I had been battling a few weeks earlier. As soon as we got back to the apartment my fever was recorded and confirmed and I went straight to bed.
The next morning I felt a little better but still not great as the other family left for the week. One of this other family is a doctor and left some antibiotics with us for me to use without having to pay to see a local doctor. I remember nothing specific about the following day or so other than that I had exactly the same symptoms as a few weeks earlier and I had linked the two in my mind. Whether there is any link is impossible to say either way. I was not well enough the next day to be out at church and I remember being out in the living room watching TV when everyone else went out not just to the evening church service but to a 90th birthday party for a church member and relative of friends of ours.
I’m not sure how long it was after they left when my head pain become more severe and the pain I’d felt when I was jolted back at the water park now became a constant pain in my neck, which also stiffened up. I could feel I was getting worse fast and already couldn’t move out of the chair to either get to bed or to call for help, even if I had known who to call. I began to feel a change from sleepiness to a shutting down. I had a really powerful sense that I should not go to sleep, that I may not wake up if I did. I battled that draw to unconsciousness minute by minute desperate for someone to come home but these social events last a long time in America (in my experience!)
Finally I felt it break, as though the crisis had passed and it was safe to sleep but I still did not dare to do so to start with and then my family arrived back. Having been helpless in the living room chair for several hours, I was now able to very slowly drag my body to bed knowing there were people around. I woke briefly to be sick but otherwise I did not wake up for about 24-
FIRST WHEELCHAIR DAY
The following day we were due to meet up with the other family at Busch Gardens, a wildlife theme park located some way from the rest of the theme parks and our temporary home and between where this other family were staying that middle week. Determined not to miss out myself but even more determined that mum should not have to miss another day as she had been doing staying back with me, I re-
This was not acceptable to anyone else, though, and they talked to me about hiring a motorised scooter for me to use. I was completely against any kind of wheelchair but finally accepted using a scooter. I was horrified when they returned with a traditional manual wheelchair and the news that all the scooters were out so this wheelchair was the only option. At first I refused to use it. Wheelchairs were for paraplegics or those who could not walk at all and I could walk, just not very far or very quickly! I was not humoured in this and given no choice!
It was my first time using a wheelchair and the different perspective/view intrigued me. Being in a wheelchair would get us to the front of rides although I wasn’t well enough nor my neck stable enough to do any rides that day. I experienced for the first time what it is like to not be able to go exactly where you want to…even when someone takes you to a particular area I didn’t get to choose exactly which spot I was in and whether I was behind someone (often knees or bellies given my eyeline!)
I also discovered they don’t build suspension into wheelchairs! Every small bump gets magnified up through the mechanisms of the chair into body of the user and one of my big bugbears was those family members who liked to lean on the chair whenever we were waiting somewhere. To them it was just a touch and maybe the most miniscule of knocks/movement but to me it was a painful jolt every movement yet it was hard work for them to push me around and I hated to complain. The problem there was that it would have wound me up so much by the time I said something that I was speaking from both pain and frustration instead of calmly explaining why it was such a problem for me!
STRANGLED
This was a big day for other reasons beyond having survived such a nasty illness (there is no way to be sure what I had but I personally believe it was a viral meningitis or encephalitis as much by the lasting consequences as by how severe the illness was at the time) and my first time in a wheelchair. My exam results came out that day and when the time was right mum went to find a phone to call England and my school to get my results as I was not well enough to do that myself. I was not expecting good things.
It was some time after mum returned before I found out what my results were, other than that they must have been better than expected, because she came running up to me to give me a congratulatory hug but in the process was shaking my neck causing absolute agony and I almost blacked out! She pulled back apologetically as soon as she realised but it took quite some time for my head to clear from the pain enough to understand what had happened – I had all A’s and B’s which, under the circumstances, was a great success and enough to allow me to continue towards medicine.
I finished the day at a fairground booth! There were a group of three in a row as we made our way to the exit and the last of these was a basketball challenge. I wasn’t sure I had the strength to shoot but I knew that normally it would be well within my abilities from all the netball training I had done in years passed so gave it a go. I scored 2 out of 3 winning myself a cuddly toy dog I called ‘Victor’ to mark the day.
I ended up using a wheelchair several more times for the remainder of that trip as I was very slow to regain strength. In an ironic twist given how opposed I was to using the chair, the first day they decided not to get a chair but expected me to walk around the park we were at, I was not happy! As much as the chair embarrassed me (wrongly) it was better than the huge struggle to drag myself around. The worse I felt that day and the less I enjoyed being out the more the chair didn’t seem like such a bad things after all. A few years later I wrote about this day and my first wheelchair experience in a poem and you can find that in the poetry section of this site or by clicking here.
“GIVE ME A ‘P’ PLEASE BOB”
It took a good few days or more before I began getting movement back in my neck but to this day the pain has never gone completely. Neck pain was not the only residual issue I was left with, tinnitus also became a constant companion from that time onwards although it did improve a little after about 15yrs. This illness also signified a speedier deterioration in the M.E.
I went back to school in September to study for A-
In the early part of the next year I began having physiotherapy as my legs were weakening and walking becoming more and more of a struggle and very slow. Teachers would carry my bag with textbooks in for me and let me rest in classrooms before or after lessons. I was hopeful about this at the beginning but the more I did the exercises I was given the worse I was getting and the muscles, always weaker on the left side (possibly genetically) began failing.
One reprieve from the normal daily struggle was a group trip to Devon (the neighbouring county about 90mins plus drive away) for the few of my peers who had also stayed on for A-
Some time later the organising teacher came to me with the good news but neither of us were super excited because I had deteriorated so much between the audition date and this point that we didn’t know if I could do it. The teacher went back to the production company and explained and they chose one of my classmates to join me to help me if I needed it. So although originally chosen as a solo contestant (in the show solo contestants take on teams of 2), I was now part of a team of 2 but that was good with me. It gave Justin a chance to take part and took the pressure off me alone!
Between those arrangements and recording date was when I ended up in the wheelchair but somehow this information didn’t make it all the way through. Justin and I took out prepaid train ride to Birmingham and he made sure the staff got the ramp out for me to get off before leaving and then he pushed the chair for me but we couldn’t see any sign of the production team. It was a while before we found them and they told us they had not been expecting a wheelchair.
Once at the studios they asked if I could walk the few steps from the main seating to the bonus round area but I couldn’t and they had no solution for this, meaning I could not now take part in the show at all! These days they would probably be in trouble for disability discrimination but at the time they were as kind as they could be and promised I would have a place on the show in the next season when I was better! I saw the recording of a few shows and they had the host come up to meet me and everyone signed the special edition Oxford Dictionary given to contestants but the next day I was on a train back home and Justin stayed to be a solo contestant on behalf of the school instead of me. I never did get to go back and it wasn’t too long before the long-
LIMP
One day in March all of the sixth formers (students who had stayed at school for A-
This school was at the top of quite a steep hill and my peers from my school decided to go down into the town centre for lunch and I stayed with them but when it came to returning up the hill to the school my knee finally gave. It would not hold my weight properly resulting in an awkward limp. I was walking on the way down but limping on the way back. I thought some rest would resolve it but the limp only got worse.
As the limp got worse it became clear that the physiotherapy was making things worse not better. At the time we didn’t know about the danger of exercise to the muscles in M.E. patients nor about the signature intolerance of such exercise and therapies. I started physio walking and ended it in a wheelchair. The physio told us my muscles were “exercise resistant”. This proved to be an accurate assessment in hindsight but what I didn’t know was that this was not what he reported to my doctor, where he instead blamed me for the failure. Once again it was reported the problem was in my head not my body! I’m glad I didn’t know that until I read my notes!
It was the half-
That day we had friends visiting and I was going down to be sociable but was nervous when I put my feet on the floor, would my legs take my weight? Relieved that they did, just, I tentatively made my way down to the living room. I don’t know what my walking looked like or what it was that was so immediately obvious to everyone in the room but my parents realised I was not going to make it back up again and cleared out a side room on the ground floor and that day they brought down what they thought most necessary and moved me into that room.
I had no idea when I left the room to go down that I wouldn’t be going back up but from that day on my bedroom was a much smaller room on the side of the house. I was fortunate to live in a large house (we had run it as a guest house for many years through my childhood) so that room had been available. By the end of that week I was in a wheelchair officially and rarely out of bed but for medical appointments and within weeks/months I was bedridden. I was 17.
SUMMER PROJECTS
That first summer in bed I was still expecting to recover and return to my A-
We sent ‘Blind Faith to publishers as well and received some nice rejection letters! It was unashamedly Christian and at the time there was not much of a Christian market in the UK, especially for fiction and even more especially for unknown writers. None of the letters told me my work was not good enough, just that they questioned its marketability but my characterisation was good. I hope to re-
Lying on a makeshift bed on the dining room floor of friends/distant cousins, I was watching Sat morning children’s TV (for possibly the only time ever) when I saw a competition to make a video of a charity need for the first ever comic relief that they were also advertising. My experiences with M.E. and the questions over diagnosis as well as what M.E. actually is had become mixed in with the media propaganda and so I had taken time to educate myself as much as I knew how at the time about the illness and had also joined the two major M.E. charities, (the M.E. Association and the M.E. Action Campaign). Taking up the challenge, I worked together with a representative of the leadership of the latter charity who wrote a humorous (yet tragically unfunny) video drama set in a courtroom where I as an M.E. patient was put on trial and ultimately found guilty. It paralleled the scenarios so many of us were facing with the medics of the time.
I also started a charity for those severely affected by M.E. aimed at providing both information on suitable places for those who couldn’t just go to any hotel, especially those who needed special facilities or consideration (i.e. low light and sound stimulation and/or special dietary requirements etc.) and providing grants towards the cost of those holidays when needed and funds allowed. Although I started the charity (called “Give M.E. A Break”) and I was the one who got all the plaudits and headlines, ultimately I became too unwell to keep up with it and it ended up landing as yet another burden on my unheralded parents!
REGIONAL TV
Most of my family were involved in the recording of the video, often playing fictional versions of themselves (sister of the accused, parent etc.) and we were delighted with the potential publicity and awareness the video could raise when our regional TV station agreed to air it. The TV station covered the whole south west region of England and I was shocked when I rang to find out when the video would be shown. They had held it back so that it could be shown when I was presented with their ‘Young Person of the Month’ award!! Unknown to me, my parents had nominated me for this award for young people between 15 and 25yrs and I had won! I was the January recipient. It was 1991 and the only year they ran that award.
Mum accompanied me to the studios in Plymouth (in the county of Devon, 90min drive each way) where I was interviewed live on the evening news show. During this time mum got talking with one of the cameramen who told her I was a “natural” on camera and should consider a career in the media. I was flattered but uninterested as I was still focused on medicine at that stage. As time passed and I had to come to terms with the realisation I was not ever going to make it to medical school after all, this suggestion would come back to mind. For now I wasn’t wanting to know but the other subject of discussion with the cameraman was of great interest.
At the time there was a religious national TV show on Sundays featuring a famous British comedian and every week they went to a different location and met local Christians (or at least, people claiming to be churchgoers!) to tell their stories or the stories of charities and other organisations in that town. That evening we learned that the show, ‘Highway’ was coming to our home town of Falmouth later in the year and he thought I would make a good story for that team. We were put in touch with the local producer and director and so began a relationship that led eventually to me being interviewed by the comedian (Sir Harry Secombe) and having one of my self-
SONGWRITING
I had started writing songs around the age of about 14 unaware that elsewhere there were Christians writing pop music with Christian lyrics. I grew up in a small, more old-
However, I also enjoyed other styles of music and wanted to play/write in those styles but using Christian lyrics. One of these songs was called ‘Lord, I Just Want To Say Thank You’ and it struck a chord with the Highway team. I had written that the year before, when I was 16, and I guess there was inspiration in this teenager unable to walk and using a neck brace to hold my head up etc., writing a song about saying ‘Thank You’ to God.
The only problem was that the national producer didn’t want to use my music just the lyrics. I was told my music was too modern for the type of show it was. (It is amusing now given how easy listening my style really is/was!). The musical director for the show was tasked with writing more suitable music for the lyrics. The local producer and team were very nervous when I was presented with the cassette recording (before the days of CD, never mind MP3 and the like!) of the new version of the song. I didn’t like it…I loved it!! I had no difficulty in the belief it was much better than my original.
Unfortunately the national producer didn’t agree and didn’t like that version either! I was stunned. The musical director had to try again. This time I hated the new music so much I actually preferred not to have the song included than to be presented like that! The local team, caught between us, was at a loss because they really wanted to include the song.
Naturally I also wanted the song featured if possible so they faxed the music through to me and I took that to the piano and fiddled around with it. I found that a few changes actually made quite a big difference to the sound and feel of the song and although I still much preferred the musical director’s first version and believed my original was better than this one, I agreed to it if the producer would accept my changes…he did.
I’m not sure at what point I was personally connected with the musical director involved but he Ronnie Cass became a supporter of my music encouraging me to do more with it. I later visited him at his home in London a couple of times and it was a huge encouragement to me to have someone like that believing in my music. I recently found a letter he wrote to me in August of 1995 during which he told me he was delighted with what I had told him I was doing (don’t remember what that could have been!) and that it was better late than never to pursue my music because I am “talented to a remarkable degree” but that it is no good if I don’t believe it myself!!
Unfortunately I have never been a good singer and that has always undermined any potential in my song writing, that and my poor health.
Arrangements made, it would not be until September that the recording would take place and it was a long hard summer between the acceptance of the song (to be sung by a female singer the show had used a few times before and suited the new style of music) and the recording and in fact I very nearly didn’t make it.
MURDER
At the end of February it was time to celebrate my 18th birthday but I was still very ill and more or less bedridden. However, it was a great distraction in the months before it as mum and I worked on scenarios for a murder mystery party with a small cast of family and a couple of friends. Mum had a tremendous amount of work getting the house ready for police and fictional detectives of all descriptions to rummage through anything anywhere in the house except the top floor where my youngest three sisters were to sleep that night. I have since learned they watched some of the proceedings through the railings of the stairs! They were aged 4-
The evening was a massive success and I don’t think anyone who was there will ever forget it. Many of them have commented on it years afterwards! I even took part myself although I forgot I couldn’t get back up when I threw myself on the floor in distress at the murder of my friend! I had to get out of character and embarrassed ask a couple of the men to lift me back into the wheelchair! I was second to be murdered so I could then rest!! A great memory during tough times.
I think it best to detail my battle with severe depression separately from this particular autobiography so if you want to know more about this then please click here. For this epic, I will include only as much as is needed for the general story. Depression is often a companion of any neurological disease but for me it was complicated because of all those who wanted to dismiss my physical condition as being purely down to depression. I couldn’t deny the latter existed, especially from this year onwards, but I couldn’t get many doctors to even consider the option that the depression was caused by the M.E. not the other way round. That year saw some of the worst depression complicating matters but so much of it was also being triggered/caused by my treatment at the hands of those tasked with helping me.
CHARING CROSS
Around June/July I was admitted to a new treatment protocol for M.E. being held at Charing Cross Hospital in London. It was based on a theory of faulty breathing and over exhaustion and the treatment involved drugs to put me to sleep for several weeks to recover properly and allow the body to ‘reset’ the breathing methods. There may have been other treatment to help with that but I never got that far. It was a three week protocol and my first time in hospital longer than the single night for the enemas as a child. I was nervous about going into hospital but I was also excited at the prospect of getting better. By that stage I had learned how important rest was to M.E. and I had terrible insomnia so being made to sleep seemed like a good idea to me. I couldn’t have been much more wrong if I’d tried!
It wasn’t long into my stay when it was clear something was wrong…I wasn’t sleeping! I was maybe sleeping a bit better at night but I was supposed to be sleeping pretty much all the time and I was not even close despite the meds they were giving me. At first they changed/increased the meds but still I wasn’t sleeping and it wasn’t for any lack of desire on my part! It never crossed my mind when making my way there that it wouldn’t work, never mind that it wouldn’t even manage to get me to sleep!
It probably shouldn’t have surprised me that when it didn’t work the attention turned to blaming me. I was accused of fighting it and deliberately preventing it from working, which couldn’t have been more untrue. I was confused why it wasn’t working but yet again devastated that the focus turned back to psychology. They brought in a psychologist whose visit felt like an attack on my very soul. Everything was twisted, nothing I said was being believed and I just wanted her to go!
As I’ve already alluded to, I WAS depressed so that not only made coping with the situation harder but it complicated everything from what I believed about myself and what was (and was not) happening to the way I was being treated. I could not argue that depression was not a factor and as such it was an easy hook for the medics looking for a way to explain the failures at best, to abdicate all responsibility themselves at worst.
As the weeks went on and the focus changed, so did the attitude of the nursing staff. I became a nuisance rather than a patient and with a few exceptions most no longer had an interest in helping me. Two incidents that demonstrate this change…although they didn’t put me to sleep, the meds they were using to try and achieve this was having an impact on my muscles leading to more extended periods of complete paralysis in all 4 limbs. During one such episode one of my ankles twisted up into an agonising spasm. Think muscle cramp pain and multiply!
Because I was in an episode of the full paralysis, I could not move the leg or ankle to break the spasm and needed someone else to do that so I called for a nurse. When she came she just poked her head through the door with a ‘What do you want?’ Through gritted teeth from the pain I asked her to move my feet to break the spasm. To my horror she said ‘No, move them yourself’ and left! I had no choice but to call again (in tears!).
I don’t remember if it was the same nurse or not who eventually responded but it looked like I was going to get the same response when whichever nurse it was obviously decided it would be easier just to do it and so with clear reluctance and annoyance she moved my feet to release the spasm. I thanked her for the relief and having seen the twisted up position of my feet it looked as though she was questioning her assessment of me as having invented the problem but not enough to apologise or be sympathetic.
FAILED AGAIN
The other incident was similar in many ways. I began coughing one afternoon and it quickly led into an asthma attack. It wasn’t the most severe and I had good breathing control so I’m not sure why I needed help, maybe I didn’t have an inhaler in reach or something but when I called through I had a similar response and no help. That time a repeat call achieved nothing and I had to rely on mind over matter completely (and of course the assistance of my God).
It all came to a head one day when the failure of the programme and the hope it had offered plus the impact of the drugs they had me on combined to bring me to a point I just didn’t know how to keep fighting. One of the doctors had his secretary come and sit with me until I slept and later had a visit from an important friend. This secretary was the first sympathetic face I saw and we became friends to the extent that she and her husband came down to visit me at home later in the summer!
I left that hospital not sure whether I had failed or just the treatment had failed. Either way I was once again being blamed and once again many questions about who I was as a person as well as whether I was genuinely ill or not surrounded me. It was clear this team thought I was deliberately preventing their treatment from working and that therefore the problems were all in my head. I became more confused, more self-
It was a little while later when a journalist entered this treatment undercover and exposed the whole thing as false! In fact, the lead doctor ended up being called before the GMC (General Medical Council) as a result. I’m not sure the result and whether he kept his licence to practice or not. One of the factors in the case was the danger of their use of some of the drugs with asthmatics and their negligent disregard of this. It turns out these meds are a big risk to asthmatics so it finally made sense why I had had the problems I’d had and I was fortunate not to have been affected more severely, especially given the lack of help I was given at the time.
I remained bedbound and unable to help myself with even basic tasks and my depression was getting worse still. While deep down I still knew these medics were all wrong about me, I assimilated so much false guilt/shame that it was close to destroying me. We knew I needed help with the depression and so I agreed to see a psychiatrist for that with the proviso that they would not attempt to treat the M.E., just the depression and its complications. What came next would likely not be believed as realistic if it were fiction and left me with PTSD!...
TO BE CONTINUED…!