Wednesday’s Child – Part 1: The Beginnings

By Shelley

My health has always been so complex, so intertwined are my various conditions, that it is impossible to simply extricate my experience of having M.E. from everything else.  In order to effectively communicate my life with M.E. it is necessary to go right back to the very beginning.

Towards the end of her pregnancy with me, my Mum was told her placenta was failing and that it was necessary to induce labour.  These days we know this condition as Pre-Eclampsia Toxaemia, but back then Doctors still subscribed to the method of telling patients as little as possible in an attempt to minimise worry.  Nine days before my due date, on a Wednesday in late October, I was born weighing under 6lbs, floppy and purple in colour.  I was duly whisked off to the Special Care Unit to be warmed up and looked after.

Although technically full term, the extent of my developmental problems soon became known – I had no sucking reflex and needed to be fed by nasogastric tube and I had a small atrial-septal defect (aka a ‘hole in the heart’).  The paediatricians decided not to treat this as it was only a small defect, but warned my parents that I would never be an athlete and would always be ‘delicate’.  At 6 weeks old I had my first surgery, for double inguinal hernias, one of which was strangulating one of my ovaries, “She must have been in agony,” the surgeon told my parents.  Finally, after a turbulent first 8 weeks of life, I was discharged from Westminster Children’s Hospital and able to go home on Christmas Day, 1981.

October/November 1981

After that, things were fairly ‘normal’, although my Mum felt I slept a lot more than a normal baby would – she would frequently have to wake me in order to feed me or else I would miss feeds entirely and be miserable with hunger when I finally woke up.  But this wasn’t without problems – indeed, by waking me for feeds I would be miserable for being woken up and would only eat a little before wanting to sleep again.  As I hit my toddler years it was not unheard of for me to fall asleep face-down in my food.  I was frequently unwell, and to boost my immune system, our GP would give me vitamin injections to try and build me up.  However, I bruised easily, and when I was subsequently due immunisations, these bruises were noticed and my Mum questioned by the doctor as to how I got them, even though he himself had administered them!

By the time I was three my constant tiredness and illnesses was causing concern and I was sent for a blood test to see if I had Glandular Fever (aka Epstein Barr Virus, aka Mononucleosis).  This is my earliest memory – sitting in the huge chair in the cubicle, with two nice ladies in white coats and my Daddy.  At first they couldn’t get blood; my vein collapsed as they still do to this day.  But they were successful with the other arm, and I came out of there rather proud of my two circular plasters with pictures of my choosing drawn on by the phlebotomist – one of a pig, and one of a smiley face, apparently representing my Dad.  Glandular fever was never diagnosed, and again my tiredness was just put down to my being ‘delicate’.

In the Spring of 1987, when I was 5 years old, I contracted Rubella.  This was only one year before the MMR vaccine was licensed in the UK, and had it been available sooner I might not have been left with so many problems.  I was taken ill in the cinema, my Dad had taken me to see Disney’s “The Fox and The Hound” for a half-term treat.  To this day I cannot watch that film without feeling sick and headachy because the associated memory is so strong.  The rubella itself was not so bad, but in the days following my illness I became extremely unwell.  One morning when I could barely open my eyes, with a pounding headache and wailing at the pain caused by the light coming through my curtains, my parents called the GP out to our house.  After a brief examination, he asked my parents if they had any idea what might be wrong.  “Meningitis?” They suggested.  He confirmed this and offered to call for an ambulance, but it was decided that it would be quicker to just bundle me into the car and drive the short distance to the city hospital.

I don’t remember much about this time as I felt so ill.  I remember having a lumbar puncture and the room being crowded with medical people – certainly, my parents have told me how scary it was to see so many people trooping into the room whilst they had to wait outside, with it being implied that everyone was there for the sole purpose of holding me down.  As it was, I didn’t have the energy to try and fight, I just lay there.  One of the doctors offered me his fingers to squeeze; my little hand barely went around 2 of his huge fingers, but he did a great job of yelping and pretending I was squeezing too hard, distracting me from what was being done to my spine.  Thankfully my case was viral rather than the often fatal bacterial meningitis, and although I needed to stay in isolation in the hospital for two weeks, I went home to spend the rest of the Summer recovering.  I think in total I was off school for around 6 weeks before the Summer holiday started.

One might think that compared to the time bomb that is bacterial meningitis, viral meningitis is no big deal.  However, although not fatal, viral meningitis can cause neurological damage and lifelong side effects.  I did not escape this.  Following my recovery I underwent tests to determine the extent of any damage I may have suffered.  I was found to have sensorineural hearing loss in my left ear – not enough to be considered deaf, but I had lost the ability to hear several tones in the normal conversational range.  It was explained to us that I would always have trouble hearing conversations in crowded environments and this has indeed always been the case.  Strategic positioning and lip reading has helped me to cope, but I didn’t even realise I had learned to lip read until a few years ago when I couldn’t understand a thing someone was saying when I wasn’t wearing my glasses!  I also lost a part of my peripheral vision in my left eye, but the worst side effect of all, debilitating me the most over all the years since then has been migraines.

From this point on I didn’t have any acute medical crises, but it was a slow, steady stream of illnesses over the years.  I always loved school and would fight tooth and nail to go – one day when I was around 7 I begged my Mum to take me in despite feeling very sick.  She agreed and came in to speak to the teacher, but as we were standing there I dry heaved, and the teacher angrily turned on me and spat that she did not have the facilities for little girls to be sick all over her classroom.  Harsh, but it was true and it did make me think twice about going to school when ill in the future, although this caused its own set of problems.  My Mum vividly remembers how she would arrive at the school gates always worried as to what state she would find me in on any given day, her heart sinking and feeling sick when she would see me walking slowly up the school path, my face crumpled and grey with pain as I suffered yet another migraine, knowing that I would need to go straight to bed when I got home and would likely have a terrible night.  The school was not particularly sympathetic, believing that young children could not suffer with migraines.  One afternoon when I was 10, my head began to pound and I remember describing the pain to the school secretary as “like something is cutting slices out of my brain”.  She laughed and sent me on my way to class, saying I’d forget about it once I was doing my afternoon lesson.  But I didn’t, and begged my teacher for some fresh air.  He was a nice man, who propped the door open for me and put a large comfy chair by it so that I could curl up and breathe the air to try and quell the rising nausea.  Nothing was working though, and I walked over to him to ask for a cup of water.  He probably thought I was attention seeking, as he started to say, “Oh, I don’t think water will help if you feel sick…” but got no further in his recommendation, as I wretched and nearly threw up on his shoes.  It was sheer will power that propelled me across the classroom to the nearest sink, where I threw up and promptly sank to my knees.  That was only the second time I can ever remember being sent home from school due to a migraine, although there may have been more times that I can’t remember. Then there were the many sick days being spent hanging out at my parents’ respective workplaces, and, as I got older, painting in my room with the radio on as I battled with a constant barrage of colds, migraines, ear and chest infections.   I began to develop a reputation with the school staff for being a hypochondriac, and my parents for being overprotective.  This was not helped by the well known fact that due to my more obvious differences I was bullied by many of my classmates.  This led to the conclusion being drawn by the staff that I must be school phobic.

Finally I started secondary school.  I chose to go to a school slightly further away where there were only 3 others from my class attending, hoping that this would stop the bullying.  Sadly, one of them, a right madam at the time, gleefully revealed my history on day 1 and it all started again.  I’m sure it wasn’t entirely down to this revelation, although maybe I could have held it off for a bit longer if she had held her tongue.  I wasn’t without friends though, and I soon surrounded myself with a core group of friends, some of whom I am still friends with to this day.

I remember being about 12 when the next set of problems arose.  There were lots of steps around the school and I remember my legs feeling incredibly shaky and sore as I walked up and down them.  Once or twice they even gave way completely underneath me as I reached the top or bottom of the stairs.  At the time I felt it wasn’t normal, but was at loss as to what it was.  I was no athlete, but I always felt like I’d just done a hard workout.  One time, whilst visiting with friends in the West Country my legs gave way whilst walking up a gentle incline.  For no more than 30 seconds my legs just would not work.  At the time I just laughed it off – it was at the height of the BSE crisis, so I made jokes about having ‘Mad Cow Disease’.  But it scared me enough to play on my mind, and for it to remain etched on my memory.  Finally one day when I was 14 it happened while walking down a steep flight of concrete steps at school, and down I went, ripping my tights, and my legs, to shreds in the process.

Things continued in this vein until I turned 15.  The bullying I was experiencing intensified until I felt so unable to cope that one day I simply went AWOL.  I’m still not sure why I no longer felt able to talk to anyone, but I had simply lost faith in people’s efforts to try and help me, including my own.  I just didn’t want to be there, so I went somewhere else.  And no, I don’t recommend sleeping on park benches!  Finally though, I got some very good support, moved forms and some classes and, as gossip is always rife in schools, word got about and people backed off a little.  Of course, I now had a reputation for being somewhat crazy, but at the time that was a vast improvement!

It was around this time that I met Danny*.  We were both volunteers for an international humanitarian organisation and quickly became friends.  He was nearly 2 years older than me and seemed so grown up to me.  He was ill with a condition he told me was called Chronic Fatigue Syndrome and was no longer in school.  The tragic, wasting illness he described to me sounded very romantic and glamorous to my extremely naive self, but at that point my understanding was as limited as most people’s.

*Names have been changed.

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