Diagnosis & remembering life before M.E

I try not to dwell too much on how I was before I got ill but it is very hard not to think about it.  The amount of times I have thought "I used to do this or do that"...but it really gets me down.  You grieve the life you used to have, the old you.

Before I got ill I was a "normal" 20 something.  I was a qualified Legal Executive which had taken several years studying law to qualify for.  I had a good job working for the Legal Department at the West Yorkshire Passenger Transport Executive.   Amongst other things, I took people to court for non payment of school travel fees (booooooo I hear you say!), I dealt with people who had accidents at bus stations & enjoyed watching the CCTV to see how different the incident was to what they had alleged had happened!  I dealt with people who smashed into bus shelters, bet you would never guess the cost of a new one.. they ain't cheap!!

I had a good social life, I went to the gym 3 times a week & I basically had the sort of life that most people my age would be expected to have.

Things changed when one of my friends was diagnosed with a rare form of kidney cancer in 2002.  She was so young & yet so brave during her treatment.   She lost all her beautiful long hair but still looked gorgeous wearing headscarves :) She was in & out of hospital after picking up various infections in between her chemo.  I would visit her in hospital & chat about all the usual stuff, then break down as soon as I left.  It was heartbreaking seeing her so frail.

I will never forget my birthday that year. I had found out through another friend that morning that the cancer had spread to her lung.  But she rang me while I was at work & sang Happy Birthday to me, the whole time I had tears rolling down my face.  She didn't mention the cancer as I later found out she didn't want to ruin my birthday.

I am sat crying now thinking about this, the day I found out she had died.  Exactly a year to the day of her getting diagnosed.  I had dreamt about it that night & knew when I woke up that it had happened.   I had several missed calls on my phone from friends but I already knew what the messages were.  Her funeral was horrendous.  She was 26.  Taken far too young.

Her death hit me really hard & I was quite badly affected by it.  A few months later we had a family wedding in the Dominican Republic & I had to take malaria tablets.  I seemed to have a reaction to them & started feeling really strange & spaced out during the holiday.  I couldn't even make it through the meal at the wedding as I felt so exhausted & had to go to bed instead.

I never felt right again after that.  The months following I became a constant pest at my doctors.  I was convinced something serious was wrong with me as I used to come in from work, sleep a few hours, go to the gym & feel totally exhausted but I couldn't understand why.  I was getting the most horrific headaches & started freaking out about having a brain tumour.

It became a bit of a joke at work as I was constantly knackered.   I kept going to the doctors & they did various blood tests.  I was checked for anaemia, thyroid problems, leukaemia amongst other stuff. All fine.  It was then after several months of symptoms that it was suggested I may have M.E.  What the hell is that I thought?

I was referred to the ME/CFS clinic in Leeds & saw Dr Stanley who was the specialist at the time.  Then I was diagnosed in March 2003.

I did not really understand it so kept pushing myself to work or to do social things depsite feeling shocking for doing it. I didn't want my life to be different.  In hindsight, it was the worst thing to have done.  I didn't listen to my body & tried pushing through it.  Until I eventually crashed.  Badly.  And became so poorly that I was pretty much housebound & bedbound for a year.  Constant pressure from work about when I was going back.  Realisation that I really wasn't getting better hit me so hard & I hated what it had done to me.

I wanted the old me back but that wasn't happening.   My life had changed for good. My M.E was caused by the trauma of my friend dying & the malaria tablets seemed to bring out the symptoms.  11 years on & I wish more than anything I had a magic wand to take it all away.