20/04/2014

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.


8 comments

  1. Your poor friend, what a cruel place the world is sometimes. As for you, having the world at your feet and living a happy life to then get so ill must have been so tough to deal with at first, like it was for me. It always seems that the most ambitious and happy for life people get ME, contrary to the common belief that we are all 'lazy fakers' those people couldn't be more wrong!
    Maybe one day someone will create that magic wand, I bloomin hope so anyway! xxx

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  2. Oh I really hope so Hayley, people don't realise just how bad it is do they :( ...wouldn't wish it on anyone & 'lazy fakers', couldn't be further from the truth xx

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  3. I got ill after the slightly traumatic birth of my 4th baby, I just never recovered. He's now 11 and I've got progressively worse but I only got a diagnosis last year.

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    2. Sorry to hear that :( Has it helped getting a diagnosis? Hope you have support.

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  4. :( it's so sad to hear what happened to your friend, absolutely awful, it's not fair is it! I was exactly the same as you when i first became ill, I tried to fight it and carry on but it catches up with you in the end! Lots of love Ali x

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    1. Thanks Lauren, no not fair at all :( ...I think it's a natural reaction to fight it maybe? Not sure but it turns your life upside down doesn't it. Hugs xx

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    2. Thanks Lauren, no not fair at all :( ...I think it's a natural reaction to fight it maybe? Not sure but it turns your life upside down doesn't it. Hugs xx

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