Celebrating my personal MS Week

Seven years ago this week my MS reared its ugly head. I would say “for the first time” but it’s never gone away since then…my ever present friend. On September 1st 2008 I started with odd feelings in my feet and legs and by September 4th I was in hospital, diagnosed with first, transverse myelitis, and then a day later, on September 5th, with MS.

There is no cure for MS. It is a chronic progressive disease. Why do I celebrate this week of anniversaries then? Because it gives me a chance to look back, to reflect on the ways I have faced up to this most personal of challenges and to recognise the new positives it has brought into my life that I would never have had without it.

So I choose to celebrate

– the friendships I have made, both in real life and on Facebook, and the laughter and tears we have shared. There are so many people in my life now that I would never have known. Wow.

– spending every day with Ian and our dogs. I celebrate the strength of our love through every challenge that comes our way… and how would we do it without our “assistance” dogs?!?

– speaking to my parents every day. 8 hours time difference made that impossible while I was working. Now every day my dad and I can put the footballing world to rights and my mum and I can laugh at all the daft things that happen to her … okay to both of us.

– being able to be a voice for those who deserve one, in whatever way I can. My disability gives me a platform to advocate for those who deserve support and compassion in a way that just isn’t the same from “the outside” of the issues.

– having a new knowledge thrust upon me, and being able to share it with those who are following behind me. Drugs, assistive devices, new research, people, places – the learning never stops. What does an MRI show? What is happening in my grey matter? What treatments are coming up in the next year? More questions than There are answers for!

– finding the right tool for the job. Comfy clothes for sitting in a wheelchair? Nothing better than IZ Adaptive! Amazing clothes at great prices by a Canadian designer! Can’t always speak? There’s a wonderful app by AssistiveWare for my iPad. Need to be able to transfer? You need a pole that you can hold in different places! When you find the right tool, the difference it makes to your daily life is incredible.

– being inventive! Nothing better than our own solutions. My lift that comes out onto the deck through the hobbit door! My super bathroom with my 3 foot door! Even the new grippy handles on my wheelchair, from pipe insulation and hockey tape

– the hours I spend in bed. Thank heavens for our super comfy bed, because I’m in it for about 16 hours a day! The books I read here (thank you Kobo), the blog I’m writing right now on my iPad in it, and the tears shed watching ManU. And of course the heavenly, blissful sleep. My dark, quiet cave that rescues me from the complexities of life, to charge me up and set me up for another dose of life outside the bedroom door.

– my medical team. I have a great medical team who I trust and I know who to call for each bit of me that “plays up”. It’s not easy and it doesn’t just happen by chance, but gradually the members of your team fall into place. 

– the MS Society. It is there for me in so many ways. It has given me an outlet to keep using my skill set, as much as my body will allow. It nourishes my knowledge in many areas, from the advocate in me to the daily support of people with MS in the community to the hope that through research there will be a cure one day soon.

Tonight I will have cake and I will celebrate! I will face the year ahead with determination and this time next year I will celebrate another year of challenges faced.

However, getting cake it perhaps a metaphor for the challenges of life – it took Ian 3 attempts to find a store that was open where he could buy my celebratory cake!

  

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