Wednesday, 13 July 2011

How it all started

It was a beautiful sunny Thursday afternoon in August 2009.  We had gone along to a local park for a game of rounders with lots of our other home educating friends.  The adults of the group often participated in these games alongside the children as I had chosen to do that afternoon.  Towards the end of my teams innings there was just myself and one other team member left in.  We were slogging and running with all our might so that we might get around the rounder and bat again.  I finished a rounder and became aware that my heart was pounding out of my chest, really unnaturally, like I'd never felt before.  I had a quick rest but before long it was my turn to bat again.  I slogged and ran, but then changed my mind and  as I tried to change direction and run back to the batting post I slipped and fell heavily.  As all the children were around I just picked myself up and brushed myself down, but inside I was feeling like I'd had a pretty nasty fall.
Then all was normal until the Sunday evening three days later.  Ant (my hubby) and I were sat at the computor watching a program on iPlayer.  All of a sudden my heart started pounding again, racing, I felt hot and sweaty but cold and shaky.  I didn't feel well and took myself off to bed.  I know now that this was the start of my rendezvous with ME/CFS.
When I woke up the next morning my heart rate was still up and I was completly drained and weak.  I managed to get an appointment at my local surgery that Monday.  The only obvious signs of illness were the fact my heart rate was still up between 100 and 120 beats a minute and I had a slight temperature.  The Doctor thought I might have a urine infection and gave me two weeks worth of antibiotics.  I ploughed on through that first week but as soon as the weekend came and Ant was home I took to my bed and didn't get up.  I think this is when those around me probably thought that something wasn't quite right as this was very unusual for me.
It actually took me a month to recover from this first episode,  during that month my body felt so delicate and my muscles so weak.  My thighs, which due to my years of previous karate training and sport had always been so strong just felt trembly and as if they might give way below me at any time.  Some days it was an effort to talk.  I remember struggling with the energy required to read a book out aloud to my son.  But, gradually during that month my energy slowly returned.
We had planned a holiday in Devon during September and off we went, I wasn't quite right, heart rate still up, but stronger than I had been.  It rained for one of the days we were away and we decided to take the children to an indoor theme park that we know.  There was a soft play area and I had obviously felt like I could participate in following my then 4 year old around on my hands and knees.  All seemed okay.  That night I was awoken at about 1am with my heart pounding and uncontrollable shakes, cold but with sweaty feet, wanting to empty my bowels every few minutes  all the previous horrible symptoms. I  went back to sleep, but again when I woke up in the morning I was completly drained and my body felt awful.  I managed to get an appointment to see a Doctor down in Devon that day - waste of time - thought it was probably more of the urine infection and gave me more antibiotics which I didn't take (I'm not a keen pill popper).  I did my best lying on the beach that day whilst everyone played around me although the sun was out I felt incredibly cold and just couldn't warm myself.
Luckily we were going home the next day.  The journey home in the car that day sticks out in my mind as one of the worst days.  I can't describe how bad, how weak I felt.  We phoned on the way home and made an appointment to see the doctor as soon as we got back into town.  Luckily for me it was a lady Doctor who had known me through some adult education work we had worked on together.  She must have taken one look at me and thought that something definately wasn't right.  I looked like **** as they say.  So, at this point, she ordered lots of blood tests.
I hadn't driven for a month as my legs didn't feel strong enough to work the pedals, but day by day my strength recovered again.
Then a third episode..and finally I began to link these funny turns I was having and the fatigue with physical exertion.  It was October 2009 and googling around I came across a passage which described the symptomns of CFS, in particular the idea of delayed fatigue which I was not familiar with i.e. that the fatigue  response might not happen until 2 or 3 days after the incident that has created it.  It was like a Eureka moment, with the exception of muscle and joint pain, this passage was describing me.

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