Regular readers may know that I have M.E, and Von Willebrands, and Lichen Sclerosus, and basically I look fine but I’ve actually been put together all wrong and I’m falling apart at the seams. For some reason no-one has quite come up with the means to sew me back up yet, so while I’m waiting on cures for genetic disorders and auto-immune problems and chronic pain, I’ve started taking part in Invisible Illness Week each September.
The first year I wrote the 30 things you might not know about my illness meme, and last year we did visible hopes; great timing as I’d been on holiday. This year, well, it’s not so hot. I’ve spent 4 of the last 7 days pretty broken, and I’ve some bizarre lumps and bumps. Right now I can’t move my eyeballs upwards, so I’ve just told the software developer who makes the voting ap for us) that if he wants eye contact he’s going to have to be much shorter!
Anyways, they asked us this year, given that we don’t choose to be ill, what we do choose. I approve of this. My mother always told me that you can always make choices, just sometimes all the options look pretty terrible, but you still get to choose and it’s important.In 2012-13 I mostly chose to work. I’ve always been enthusiastic about working, and KMD started partly as a solution to being too ill to do my original vocation. And we’ve grown hugely this year, thanks to working with our fabulous deadlies - somewhere just under the 50% mark, which is amazing!
If you are familiar with M.E though you will know that for me to be working too much is not safe or sustainable though, so I guess I need to make some different choices for 2014. Some of these involve flat shoes and those wheely granny trolly things so if anyone has more stylish suggestions then I am all great big wagging ears right now!