Today is ME Awareness day as I'm sure you are well aware from all the posts I've been sharing.
I've been wondering all week what my blog today was going to be about. I had a couple of false starts and this morning decided that I didn't HAVE to write a blog just because it is awareness day. But then I was chatting to a friend and it suddenly became clear what I should write.
I've been reading over the last week a whole load of #millionsmissing posts, which is a marvelous campaign and I hope the various demonstrations around the world today have opened eyes. What I've learnt (though really knew anyway) from reading these posts is that I am lucky.
I am not bedbound, I am not housebound, tubefed, paralysed, unable to face light, sound, company.
The diagnosis of ME covers such a broad spectrum of symptoms it is crazy that they can band it all under the same name.
My specialist used to get me to rate my health in terms of % and it is something that has stuck in my mind and can be a useful tool to mark progress. As some of you will know I've not had the best 2018 health-wise so far suffering a pretty major set back at the start of the year. I'd say I am currently hovering around 55% but have been as low 25%. (I have now been staring at those numbers for 10 mins wondering if they are right, hmm)
I have only in the last month or so began to feel like I am participating in 2018 and not just watching it roll on by.
So yes, I am lucky.
But then on the flip side.
I took my girls this morning to a local Kwik cricket club. This was the first time they have shown any interest in the game and I was quite excited. Being there made me realise how much I miss playing the game and teaching others the skills. It also made me realise that I haven't even taught my kids how to throw and catch a tennis ball. But after standing in a field for an hour I was completely floored and fully reminded of why I can't do it.
There are when I think about it so many things that I miss doing.
But life evolves, you adapt to what you can do and try not to dwell on what you can't.
So yes, I am lucky.
