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Sticks and stones

April is a pretty significant month  around here. In April nine years ago I became a mum for the first time; in April three years ago I woke up with funny feelings in my arm and a vertigo which lasted for months – the first of my relapses. Last April I relapsed three days before my birthday and tried not to frighten my friends by being unable to walk properly at my birthday meal; and this April I have just turned forty. So far I like being forty – I was lucky enough to see lots of lovely friends at a lovely party (with lots of lovely presents!) We chose one where I could pick the music (poor friends!) but there would be no real dancing, thus avoiding my biggest MS regret of no longer being able to strut my stuff on a dance floor. And now I have a week off my elective to be with the littlies, doing our favourite thing of not getting out of our pyjamas until we really have to. I got my first choice job for next year, have already managed to get them to agree I can have Christmas day off and have booked up the calendar until work starts with lots of fun stuff. So life is good.

But (why is there so often a but?) the relapse that was due in the autumn and which I have been fighting off with Copaxone can be felt knocking at the door and the whole family is having to come to terms with the persistence of these rubbish leg symptoms. A few weeks ago I casually mentioned to my daughter that I might need to get a stick to use sometimes and the vehemence of her response took me completely by surprise. My daughter is a warm, funny, clever and determined little person blessed with her father’s sporting ability and her mother’s hot-headed stubbornness. She often shows great empathy and care for those less fortunate than herself and has a very healthy attitude towards people with disabilities (largely engendered by the paralympics!) So I was shocked and upset when she angrily told me that if I used a stick she would be too embarrassed to be seen with me. A week later (neither of us having mentioned it in the interim) she tearily told me that she didn’t want anything to change and she wanted me to be the “type of mummy who can just run down to the park” with her. After a cuddle and a joke about how I never go to the park anyway (watching children at the park features in my list of things I could happily never do again) I had a think about how confusing this must all be. Some days I am whizzing around as I always have and on other days I am limping and too tired to do much more than hand them both a screen and have a snooze. We are all learning how to deal with this and the lesson I am struggling to learn is the lesson of moderation. At the moment, when I have energy and my muscles aren’t in spasm I am raring to go – grabbing opportunities to see friends, occasionally getting out on the bike, hosting two birthday parties in a week and even orienteering (this weekend I fell down a rabbit hole whilst cutting across undergrowth trying to beat Mr C and my dad.) Yet the consequence of this is days where I am limping around or so fatigued that I can’t even speak to the children coherently, never mind play endless games of Cluedo and Harry Potter lego (and going to the park would be akin to climbing Everest.)

So what to do? The way I see it I have two choices: 1) Keep grabbing hold of the pockets of energy, exploiting the times when I can do things and accepting that for a few days afterwards I will struggle or 2) Pace myself – don’t do anything too strenuous, build in regular rest, live a calmer life so that there is less pain and fewer moments where I can’t find the words to explain the concept of infinity to a curious (and impatient) six year old. Those of you who know me personally know that the only option I will accept at the moment is number one. And that means a stick. Which is scary for all of us. In an attempt to make it less scary for our daughter I agreed that she could choose the colour and pattern of the stick. This was almost more terrifying for me as she has really quite awful taste and I could imagine her finding a leopard-print stick with added bling. Luckily we have agreed on a red one. I have my eye on a spotty one but it’s quite expensive so we’ll see how this one goes first. So if you see me with it please act as though it is a positive thing – firstly so that she can feel its no big deal and feel confident to brush it off if any of her friends mention it, but also because if you see me using it you know I’ve been doing something un-sensible recently and surely that’s worth celebrating!

 

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4 thoughts on “Sticks and stones

  1. Sam you are an inspiration. I don’t have MS so have no idea what you have to deal with on a daily basis however I do have my own internal struggle and seeing how positively you manage your limitations encourages me to keep going on the rubbish-est of days. You were there at the start of my journey into being a mummy and I enjoy following your news. Thank you for writing this! Love Leanne xxx

  2. I know EXACTLY how you feel!! I have been diagnosed this year and am waiting to start on copaxone. I can have 2 or 3 weeks when I feel fine and go flat our with my work (I am self emplyed and make soft furnishings) then for the next 2 weeks its as if I’ve had 10 late nights in a row and I’ve got lead shoes on!! I hate being told to pace myself….if I feel well then I am going to do normal stuff!!!! Thanks for your blog. Christine

  3. Just think lovely, she could have picked you a Tory blue one with bling….then what would you have done huh? ;-)

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