Sunday, 15 May 2016


I have MS. Not news, I know. But it kinda is. I write about it here but it's not a common topic in the real world for me. I am not loathe to talk about it. In fact, I would do speaking engagements about invisible illnesses, given the chance. I moderate an MS forum but don't post there much at all outside of moderator duties. MS is in me but it's not me. I don't give it more attention than I feel it deserves.

But I do have to give it attention.

I have talked a bit about roles before and I have a lot of roles in life. I am a wife. I'm a writer. I am a lover of all things colourful. I am a kitchen dancer, a terrible joke teller, and a cat charmer. I am a reverend of sorts (yes, me). I am a beachcomber, a ukulele torturer, and personal assistant to a dog and a cat. I am a vegetarian, an atheist, and a gay woman. I am a friend. I am a sister. I'm a daughter. But I don't identify with using MS as a role or title. I have MS. I am not an MS victim or an MS patient. MS is something I carry inside me. It has little to do with who I am aside from the constant new normal conditioning. I plan around it but don't feed it.

I rarely bring it up. Again, I don't mind the topic, but I don't necessarily find it all that interesting most of the time. That means that some people forget I have MS or they don't understand that it is something I have to plan around. That I haven't felt parts of my right leg in years. That my legs hurt pretty much all the time. Or that my vision is (still) a little messed up. I don't like the phone because it's easier for me to track a conversation in person or through text. None of that can be considered captivating conversation.

And yet, I do need people to understand it enough to know why I can't always commit to a long day, or why I may hide in a spare room for a while during a visit.

I am here lounging on a bed in a friend's basement to try to recoup some of today's lost spoons. I am done in. I don't want to be resting but my faulty battery got the better of me. It sucks. The heat zapped my energy and my legs feel electric. Uhthoff's phenomenon. I remind myself that so many people out there with MS wouldn't have been able to do the things I have enjoyed today. And the day was great, just lacking other things I wanted to do. Missing out makes me cranky. My mantra is to stay grateful. It's hard sometimes, but I keep trying.

This rambling, unedited, unfocused post brought to you from the comfort of a chilly bedroom on a hot day.


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