May 12th – International ME/CFS awareness day

Yesterday was ME Awareness day.  Due to my ME I didn’t manage to get a post out yesterday, but better late than never.  Here’s my contribution to raising awareness by trying to explain a bit about how this illness affects me.

Last May I joined a group of ME sufferers in a Sponsored Pyjama Day to raise money for ME charities.  I was amazed by the amount of sponsorship I received, and so made an effort to get out in public in my PJs.  Here I am visiting the garden centre, on my mobility scooter.

ME Awareness day 2013 – Pyjama Day

 I shared the picture above publicly last year to thank my sponsors, and yet the picture below is a much more accurate picture of how I spent the day (the band round my head is earphones which you can wear lying down – I use them every day.)

How I spent most of the day

How I spent most of the day

The only people that see me at my worst are my family, because at that point I’m too ill to go anywhere or invite people to the house.

One of my main symptoms is Post Exertional Malaise (PEM).  ME is not well understood by the medical profession, but it is believed PEM is caused by the mitochondria in cells not functioning properly.  Mitochondria are the engines of our cells, they provide the energy for all cellular functions.  We have many different cells doing different jobs in our body; brain, heart, blood, muscles etc.  All these cells are powered by mitochondria, and hence if the mitochondria are not providing the energy they should , none of these cells can function properly. In an attempt to keep supplying energy, the mitochondria switch to anaerobic metabaolism.  As any athlete knows this is unsustainable; it causes a build of lactic acid in the muscles, leading to pain.  It can take an ME sufferer several days to recover from this, and during this time we suffer from PEM.    A fuller explanation of the cellular processes that lead to PEM can be found on Dr Myhill’s website.

For me, PEM feels like I’ve been poisoned, other sufferers say it feels like having the flu.  I think the poisoned feeling is due to my body struggling to process the lactic acid and other cellular by products.

The threshold of activity that causes PEM is rising for me, so I’m able to do much more this year than last year before I suffer.  However, yesterday I was suffering (mildly compared to how things used to be) following a busy weekend at my sister’s Hen Do (picture below).  It’s great to be able to join in activities like this, but I am reminded that although I can now appear relatively normal for 1 day, I can’t yet sustain it.

My illness is invisible now

My illness is invisible on the Hen Do

My ME symptoms are classified as mild, but there are many sufferers who are housebound or bedbound.   Action for ME have made a short (4 minute) film to raise awareness of ME.

If you would like to support an ME charity then there are several main charities in the UK.

Thanks for taking the time to read more about my invisible illness.  Hopefully this time next year I will be talking about my ME in the past tense.


2 responses to “May 12th – International ME/CFS awareness day

  1. Pingback: PEM – A Survival Guide | Eat 4 ME

  2. Pingback: 12 May 2015 – International ME/CFS awareness day | Eat 4 ME

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