Today

I’ve put up decorations today and helped the children put up and decorate the Christmas tree. I’m so thankful I’ve got enough spoons today to do this. Last week would have been a different story. Last Saturday I was miserably pondering the possibility of never being able to do anything Christmassy again with my children due to being so low on reserves and breath that it was all I could do to crawl on to the sofa and grumpily read everyone else’s Facebook comments about days out with the family, Christmas baking and craft and great parties. Everyone else was having all the fun, it seemed, and I wanted to shout at them, how dare you be enjoying yourself and doing nice things with your families when I am stuck in feeling like this and my children don’t ever seem to get the best of me?

Of course, I didn’t mean that, not really, and I didn’t write an attention seeking status update telling everyone that I felt that way and to shut up. Because really I was loving hearing about people’s days and fun and family time, and I will always want to hear that. But there is something inside that mourns the loss of such times, and as the disease progresses the times become less. I have to grab what I can with both hands and be delighted at the days I can partake in such. Today is one, which is a good thing as we are having a party later. Despite waking up feeling like today wouldn’t work it has so far. And a small thing like putting the tree up with carols in the background and children dancing around with tinsel in their hair has made me smile, has made me appreciate what I have.

I know I need to be able to deal with the possibility of having less days like this one, and finding delight in things anyway. I cannot only be happy when I feel better. My challenge is to smile on the bad days, to smile last Saturday. To be happy last Thursday when Adventure Bloke went to see the Adventurous Pair sing at the Young Voices concert in Birmingham – to smile that even though I couldn’t go, they were experiencing it anyway, and forming lovely memories.

But I’m not very good at that really. I think it’s OK to grump as well. Nobody’s perfect, after all, though of course Adventure Bloke comes close ;)

I guess I need to live for each day. Even if I can find a moment in a bad day where I see the good, it can lift me beyond myself. It’s not all about me!  One thing all this does is help me think of those who are much more poorly than me, those housebound, those on 24/7 oxygen, those not able to get out at all, and how they feel. It gives me a small glimpse into how it can be so isolating and lonely to be in this place. It inspires me to wonder what I can do to help.

Today I’ll make the most of today. And tomorrow may not be so good. But at least I got to put up the Christmas Tree with my children. At least I got to make mince pies and tut at all the glitter on the floor from their wonderful artistic creations. At least I’ll get to enjoy some mulled wine and chat to friends. At least for today. And that’s good.