ME Awareness: The Lost Years by Samantha Whittingham | 03 May 2020


The Lost Years by Samantha Whittingham

I don’t remember lots from that time, mostly I remember being in bed watching the world from my window, visits to doctors who told me there was nothing wrong, I remember sobbing in corners telling people I wasn’t making it up.

Yes, school was good, no I wasn’t lying and then feeling just how much I just wanted to die. I didn’t care, I was happy to just slip away just to stop existing. I was ten years old!

Samantha Whittingham – ten years-old.

Finally, after one doctor told my mum I was faking and to send me to school, I ended up in hospital on a drip severely dehydrated as I had been unable to keep anything down or find the strength to drink. Then they listened. We even had an apology.

We lived in Surrey and were then treated free by this doctor in his private practice. He found the most amazing lady doctor for me, Dr Snee. Without her I don’t know what my life would have looked like.

One evening she rang with the diagnosis. At the time there were very few children’s cases and we knew very little. But knowing I wasn’t lying, or faking helped a lot. We tried many different “cures” but finally managed a balance of school and rest that meant I was able to live again.

Those I thought were my lost years. I had missed so much school, activities with friends, parties, bonfire nights (I still love watching these from a window as it still reminds me of home).

Sam’s Wedding Day.

Life carried on around me as I spent months in bed. Weirdly I was aware I had missed so much maths at school that I never made up, despite mastering Algebra I still don’t know my timetables or know how to divide easily. My Mum missed out on work to look after me and this had a big impact on our family later in life.

But these things I thought were lost and I wouldn’t lose anymore. I had been ill, but I was well now. I thought this for a long time. I was unaware that feeling so tired all the time wasn’t normal. I had had to give up dancing but everything else I could manage or so I thought.

As a teenager I went out like everyone else, I would sleep a lot but then I was a teenager. I would get ill with colds or flu and have two or three weeks to get better not understanding why it took so long.

I was supposed to go to University but could not see how I would mange my course and work as well.

My first real relapse happened in my twenties, it lasted nearly a year and again I didn’t really understand it. My husband was the first to point out that people just don’t come home and collapse every night after work.

They don’t need to rest (although its nice to) on a Sunday before another week starts. They don’t suffer from coughs that last three or four months, or from doing too much one day and then taking a week to recover.

Sam with her family.

I am now in my forties. Last year I had a really bad relapse that I really had to fight mentally to survive. I felt the same I would happily give up feeling I had so many years ago.

It took a lot, but I did fight. I would not lose any more years to this disease. I have learnt so much about M.E. I know I shouldn’t work with children in a special needs school. But I love it.

I accept that this means I lose time with my children when I get home as invariably I am in bed at least three nights a week by 7 or 8. I guess to me the way I am is normal.

It’s how I manage; it’s how I live. I don’t remember ever being any different which I think helps. Mostly I try to balance my energy in and out.

But I will go out and exhaust my self because one of my children wants to go on a bike ride, then be aware that my body hurts, and I need to rest.

I accept that the way I want to live my life means I will lose hours and days to rest and recovery, but I will not lose any more years. It will not win. I am stronger now.

P.S.  Forever thank you, Dr Snee.

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