• Helen Lopez

Today could have been a duvet day.

And to be fair it was looking like a duvet day until about half nine. Yesterday I had an afternoon out socialising with dear friends our monthly meetings are called knit club there are just five of us. I say yes to this when I say no to many things, and try and attend every month. I am blessed with this group of women who came together originally when I owned a yarn shop in Menai Bridge for a few years and knit club was every week. The die hards have kept going obviously we knit or crochet and we catch up, drink tea and there is always cake.

To go to knit club I have to fore go my afternoon rest. So today I am depleted and no real energy to spare, there is a tiny bit sloshing around in the bottom of the tank but its murky and I'm running sluggish. I am an artist that needs to schedule living with multiple sclerosis and it's constant play of catch up.

On my list of stuff I want to do today is paint and write and cook - I managed an hour and half in the studio and here I am now lying down with my laptop. My rest times are surprisingly productive - what I really need is to lie down, a rest from gravity, where my body can relax, my mind though can keep going and so it does. I read the harder dryer books I have on the go, add to my fledgling website or this, write this blog and rest time usually involves a couple of squares (at least) of dark chocolate as I believe perhaps erroneously that it helps with fatigue.

It has turned very cold here in North Wales - a cold easterly wind which rattles the letter box - swings in temperature either way catch me out. I forget this and over the past week my legs have been unreliable they just don't want to hold me up for as long as I expect and I find myself reaching for furniture to hold on to. There is also increased nerve pain in my legs, feet and hands - the best description I know of what this feels like is - how the screen of and old tube television use to look and sound once transmission was over all those jumping spots and a nasty tone.

I write this not for sympathy I really don't want any I find it tremendously distasteful - I write about how it is for me with multiple sclerosis to raise awareness. I look really well, I am told this often, and I must but then I look after myself if I didn't where would I be? It always pisses me off when people say "but you look so well" as if I am lying! I think it pisses me off so much because it denies the effort it takes to look so well when being gripped continuously by an invisible non curable life changing disease.

I am coming to the end of my rest time for this afternoon, time to prep for cooking, I am making a smoked salmon risotto, really quick and easy with little effort - good brain food too.

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