Busy Living Life

Hi Everyone, sorry I have been silent for the past week but I have been busy trying to live life! I had a wonderful four days, cramming in everything that makes me happy.

On Thursday I baked a very ‘informal’ looking carrot cake for Mr M.E.’s birthday and on Friday I bought flowers to make a bouquet for my mum-in-law for Mother’s Day. On Friday night, I went around to visit my closest friend Jo and read to her kids, we drank and talked for hours and then on Saturday, although I was starting to fade we all went out for a family lunch for Mr M.E.’s birthday. I had a little wobble whilst we were out, where I nearly fainted but I managed to carry on.

So we went on to his parents for the rest of the afternoon and Mr M.E. called it at 6pm when he saw I could barely speak any longer. On Sunday I gave my very last burst of energy to drink champagne and play computer games with Mr M.E. on his actual birthday…….

And now, for the past few days I have been dying.

I have spent over 12 hours each day in bed in full body pain of one sort or another.

On Monday I was breathless from the pain in my upper stomach and my back and I felt extremely nauseous and dizzy, so much so that I had to go back to bed for an hour in the afternoon. On Monday night in the middle of the night and throughout yesterday I had painful diarrhoea culminating in my throwing up half way through the dinner that I struggled to make.

Then last night I missed my sleep ‘window’ as my little sister calls it and woke up almost every hour with nerve pains shooting through my wrists and hands and my back, neck and shoulders aching so much that I couldn’t get comfortable no matter what position I lay in.

Today I am still in a lot of pain and I am exhausted, my head is pulsating, my eyes are blurry and writing this is a challenge. Again, I don’t want your pity. I am trying to get a message across.

I once heard someone say of a fellow CFS/ME sufferer “but she seems to be able to do things when she wants to, she goes on holiday, she has her little volunteer job” and I didn’t speak up for that person at the time but now I am.

You don’t see how that person suffers either before or after they’ve done the things they have tried to do. You don’t see behind her closed doors.

Living like this does not mean we don’t deserve to try and get out and live and have some enjoyment. Quite the contrary, and we should absolutely refuse to apologise for it.

The insinuation was that if she could choose to do these certain things, then couldn’t she do more, or couldn’t she work or exercise. And the deep underlying insinuation is that she was hamming it up for sympathy or attention or worse still isn’t really that sick….

Well I’m telling you, every time someone like me chooses life, we are also choosing to pay a heavy physical price.

Look at me. I tried to live like a normal person for just a few days and I end up in agony, puking and shitting through the eye of a needle, if you’ll excuse my French.

Let me ask you; if you knew, that every time you went out in the sunshine, your skin would blister – would you be brave enough to keep doing it anyway?

So I will keep pushing myself and paying the price, regardless of whether people judge me only on the little bits they see and when they do judge me or anyone else, I hope you will speak up.

To lighten the mood, please see my bad attempt at a carrot cake (which everyone said tasted good) and my much better attempt at a bouquet of flowers.


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