Today marks the start of MS Awareness Week.
The MS Trust has an ambition to make sure that everyone with multiple sclerosis in the UK has access to an MS nurse. As they explain on their website:
"MS specialist nurses are vital for people living with MS. They can help them adjust to diagnosis, consider complicated treatment options, manage a wide range of symptoms and learn to live well with an unpredictable, often debilitating, lifelong condition.
"Without MS nurses, people with MS may have to manage difficult symptoms alone. They may also have to rely on expensive emergency care when their symptoms get worse.
"MS Trust research into nursing levels across the UK has found around two-thirds of the 108,000 people with MS in the UK live in areas where there aren’t enough MS nurses."
I'm lucky enough to have access to MS nurses in Nottingham. In fact, these nurses have provided me with more care and attention than the neurologists that I see. It was an MS nurse who taught me how to inject; it was an MS nurse who provided me with access to physiotherapy and orthotics to help me keep running; it was an MS nurse who provided me with the letter that enabled me to convince a doctor in Australia to pass me fit to dive in a dive medical in Cairns (he wasn't sure, but Maxine telling him that everything would be fine made all the difference. I sent her a postcard from the Great Barrier Reef that she still mentions from time to time). Above all, it's the MS nurses who are my first phonecall if anything happens and who provide my access to the NHS. They're wonderful, and I was shocked when I heard that my younger brother didn't have access to an MS nurse where he used to live in Northamptonshire and was instead forced to deal directly with drugs company funded nurses.
That's not cool.
The MS Trust is a brilliant charity, and providing everyone with MS in the UK access to an MS nurse is a fantastic ambition... more than that, it's an ambition that I'm keen to support.
Exactly 365 days ago, C. and I ran the London Marathon for the second time to raise money for the MS Trust. Between the marathon in 2015 and the one last year, we raised something in excess of £20,000. That's not too shabby and helps a very worthwhile charity make a real difference to the lives of people with MS.
We've had a year off fundraising and off marathons this year, and I've had a few problems with my legs that have affected my running and the way I feel about my running. But you know what? I want a target and I want to make a difference... so we're going to run the London marathon again in 2018 (if the MS Trust will have us, obviously. Even if we get in on the ballot, we'll still be fundraising).
I ran 2015 side-by-side with my wife, but crossed the finish line knowing that I wanted to run it on my own. I ran 40 minutes faster in 2016, but I've got very little desire to push my body that hard this time around. Things have changed physically for me, and I want to take on this challenge to prove to myself one more time that I've got the mental strength to complete another marathon.... running again with my wife, if she'll put up with me. I only have to look around the waiting room at an MS clinic to know how lucky I am. My legs might be a bit weird at the moment, but I'm running a half marathon this coming weekend and I know I still have a lot to be thankful for. I want to use some of that to try and raise some money that will really make a difference to the lives of people diagnosed with this horrible bloody condition.
I think this one might be emotional.
Monday, 24 April 2017
our work is never over...
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