Dancing queen

Regular readers of these witterings will know that, once I started to come to terms with my diagnosis, the lasting sadness has been my inability to dance. I love dancing. From making up routines with my sister and school friends to pogo-ing in mosh pits in the early 1990s, from “salsasise” at my local leisure centre to energetic daft dancing with Mr C in indie nightclubs, from a youth dancing on bars and tables to a 30-odd year old dancing in the kitchen with my babies I have always loved dancing. And when I became unwell I couldn’t really do it anymore. My balance is off and my legs aren’t strong. Pins and needles and vertigo are the enemy of stuff-strutting. I have also been known to fall over if I try and that is a bit disconcerting for the children.
But this summer I have danced a little. I have danced at my aunt’s marriage blessing, I have danced with the tween, and, on Saturday, I danced at a charity ball. I have never been to a ball before but I squeezed into a dress, donned a new pair of Converse, drank a little too much cider and danced … a lot. I got home in the early hours and publicly raved about how wonderful I felt and how grateful I am to the Copaxone for “fixing me.”
And I am so grateful. But I’m not fixed. Since the weekend my legs have regressed to the state they were in when I bought my stick and all l want to do is sleep. I am a bit gutted which is probably a bit ridiculous. If this is as bad as it gets for now then it’s a manageable thing. I just need to moderate myself (never my strong point!) and remind myself of all the energy-management skills the MS nurses have taught me. And my resistance to this is yet another mini hurdle on this long road to full acceptance of what is happening to me.
And another mini hurdle is trying to find the balance between maintaining a normal life and accepting the help that is offered to me as a person with occasional disability. The public face of this is the use of my blue badge. I use my blue badge at work to park in the area closest to work. It don’t use “disabled” spaces but I do display my badge to be able to park there as part of the hospital policy. And when I do I feel people looking and judging. MS is one of a group of disorders that are sometimes called “invisible illnesses.” If you look online/on Facebook you will see a bounty of messages of frustration from people whose difficulties are not recognised because they don’t “look ill.” I am not the only person who has had people tell them they are “lucky” to have a blue badge. People wish for greater recognition of their symptoms and struggles from colleagues, acquaintances and wider society. And while I empathise it’s not a wish I share. I would quite like to keep my symptoms quiet, especially in this new job, or around my children (and when I told I am lucky I feel a flash of anger at the insensitivity of telling a person with a progressive disease how lucky they are!). But the point of this blog is to talk about how, with this luck, and support, and good medication, it is possible to keep living a full life with these symptoms and so reduce the fear felt by people at first diagnosis. And that you may have periods of time when you can’t do things but that does not inevitably mean you will NEVER do them again.
This Friday sees the start of the best thing about autumn and winter for this family – Strictly time. And so, with the appropriate level of cheesiness and with dancing shoes that are sequinned Converse rather than ruby red high heels I exhort everyone to “keep dancing” even if they have to do it sitting down.

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