Today is World MS Day. This is an updated version of a post that I originally posted on Facebook in 2015 which partly explains my attitude to life and having MS.
Today is World MS Day. I rarely discuss my illness, or all it’s little dramas and absurdities, on social media because it’s really not that interesting. But yesterday I was asked about it so this is a ‘once only’ offering. This is my story…
I was diagnosed with Relapsing Remitting MS in 2001 following an optic neuritis. At the time I was running, climbing and swimming everyday, and had the 32″ waist and lung-capacity to prove it. When I met my wife in 2005 my 10K time was still under 45 minutes, I could bench-press my own weight, and MS was an occasional thought at the back of my mind. Now I can be buggered after climbing the stairs, I occasionally bounce off walls, make old-man noises when I stand up and on really bad days get to park closer to the shops in the big blue bays.
But despite all this I have something important to say: I love my MS. Being diagnosed with MS was the best thing that ever happened to me (before I met the Wee Wifey).
Some people will disagree with this (tea will be spluttered over keyboards and angry letters sent to the Editor), but tough, I’m going to say it. Because in a world where people play Top Trumps with their symptoms and illnesses I’m an MS lover and proud. Here’s why.
I never chose MS, but for whatever reason it chose me. I have no idea why, may never know, and when I ask ‘why me?’ the answer is ‘why not?’. That may seem glib, but it’s true. Why shouldn’t it be me? Rather me than you, right? But shit happens, that’s life. So after a very enjoyable 3 month bender on cheap wine, some truly depressing group support sessions, and a spell with a very understanding psychologist I had a choice to make: do I give in to the disease or do I live my life?
I chose to live my life and changed it for the better. Here’s why.
My MS gives me a unique perspective on the problems and lives of others. It’s made me more compassionate, patient and understanding. It’s made me more grateful for the things I have in life, and thankful that I had an opportunity to do those things that I can no longer do. I might miss being able to run 20 miles or take a hike up a mountain, but I had the chance to do them and I took it. I regret nothing.
I wake up in the morning and am thankful to have a beautiful wife next to me (yes Alexis, that’s you), and I get to tell her that I love her. I get to tell my best friend and soulmate that I love her, that is cool. We laugh together every day and although we disagree over some things (like MPH), in 13 years we’ve never argued. What’s the point? Life is notoriously short. We’ve got much better things to do with our time together and she loves me for who I am, flaws and imperfections included. And I love her in exactly the same way.
I have an excellent, challenging job that makes me think and allows me to make a real difference, and I got it because I want to prove that having a disability doesn’t, and shouldn’t, prevent anyone from doing what they want to. My company has been exceptionally supportive and accommodates as many reasonable adjustments as possible, and I’ve taken those opportunities and chances. In my other day-job I get to help people daily and that’s really, really rewarding. To those of you I’ve supported, thank you for trusting me and letting me do that for you.
I’m also thankful that I have a very close group of friends and colleagues who support me, encourage me and understand me. They don’t mother me, they don’t exclude me, and they’re not afraid to tell me the truth, even when I don’t want to hear it.
I put time and effort into my relationships, be it with my wife, my friends and family, my work colleagues. Because they’re worth it and I’m worth it. I’ve had some difficult and uncomfortable conversations but the end result makes life so much easier and simpler because they understand how I’m feeling, and I understand how they feel. MS isn’t just about me, but me and everyone else.
And I’m fortunate to be in the care of one of the countries best MS specialist teams at Newcastle’s RVI. A group of neurologists and nurses who epitomise all that is good with the NHS and have been a massive support over the last few years. They work miracles daily.
My MS gives me strength and hope. I curse it at times and it frustrates me, and sometimes it scares me to tears, but I’ve never given in to it. The only way to find out what the limits of my abilities are is to push myself until I can no longer go on. And then, when I’ve crashed spectacularly and I’m sitting on the couch, I see that as an opportunity to read a good book, catch up on my Sky+ list or learn something new.
I’m ridiculously stubborn and competitive, but I’ll ask for help when I need it because I can’t do it all myself. I’m not so proud that I won’t ask a stranger to open a bottle of water for me. Losing face has never killed anyone, dehydration has.
I’ve been through the full range of emotions, I’ve hit rock bottom and started to dig, but I’ve come back. I’ve done some wonderful things since being diagnosed, have many more planned, and I have an awesome (and understanding) wife to share adventures with. Some of them might kill me but I’ll take them on anyway, for the simple reason that I believe I can. I will.
I realised very quickly that, for me, the only way of dealing with my MS was to embrace it, invite it into my life and work with it. I choose how it makes me feel, I control how it affects me, and I take responsibility for it. I choose to be positive whenever I can, and only I can take responsibility for how I feel. My body, my choices. My life, my rules.
MS is a uniquely individual condition and this is how I handle my MS. I’m not telling anyone how they should feel, or that this is the best way of coping, or that my way is better than yours. There is no right or wrong way to live with MS because we all have our own methods and strategies to get through each day.
But this is how I live, and I fucking love it.