Garry Hunter

A view of my own…

Author: Garry

Why I love my MS…

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.

I’m going to…

As 2018 wakes up, looks at the alarm clock and goes back to sleep for another 10 minutes, I’ve been wandering the house thinking of the promise that comes with every new year. The unbridled hope and belief that, because the year’s changed, you have the opportunity to hit the ‘start over’ button and make the changes you’ve spent the past 12 months wanting to make. In no particular order, these are some of the things I’m going to do and be…

I’m going to be a better husband. I’m going to have more adventures with my wife, love her more and share more. Bucket lists will be filled and emptied together. I’m not going to answer “nothing” when she asks what I’m thinking, unless it really is nothing. Which is quite often.

I’m going to be a better son and brother. I’m going to travel home more often and make an effort to keep in touch with my brother who’s 5000 miles away. I’m going to buy him and his family sensible presents. No more Nerf guns or funny t-shirts, although there may be crossbows. I’m going to laugh with my neices and nephews and remember that they are children, not adults.

I’m going to be more patient with others. I’m going to be more sociable. I’m going to eat out at better restaurants and tip more than I can afford. I’m going to order less takeaway food and I’m going to drink more water. I’m going to be healthier and fitter and lose weight. I’m going to spend less and save more. I’m going to read more and write more. I’m going to talk less and listen more. I’m going to devote more time to my friends and less to chasing social likes. I’m going to take up a new hobby and resurrect old ones. I’m going to travel more and see the interesting parts of the world that are tucked away in unexplored corners. I’m going to cook better food and eat less crap. Fruit and veg will no longer go unloved at the bottom of the fridge. I’m going to change my wardrobe and get rid of everything that’s 2 sizes and 20 years too small for me.

I’m going to de-clutter and the spare room will once again become an oasis of minimalistic calm, creativity and productivity where I’m going to write every day and listen to new, undiscovered bands. I’m going to finish all those jobs around the house that need doing. The roof will no longer leak, the drain will be unblocked, the walls will be painted. The garden will be tidied, weeds removed, and I’m going to create a haven for wildlife. I’m going to clean more often and banish that layer of dust on top of the DVD unit for ever.

I’m going to be a better person in everything I do. I’m going to be a role-model for others. I’m going to complete work and start meetings on time. I’m going to procrastinate less. My productivity will be exceptional. My Inbox will be zeroed. I’m going to submit assignments in good time and 1am panics over word count will be bad memories.

I’m going to suffer idiots but not their idiocy. I’m going to educate ignorance, cultivate understanding and show tolerance. I’m going to inspire those people I look after. There will be no more indulging the complainers and validating their opinions because their views will be challenged.

I’m going to promise not to say “I’ll start tomorrow” and do everything there and then. I’m going to start this tomorrow.

I’m going to accept my limitations and failings. I’m going to be uncomfortable about being comfortable. I’m going to face the challenges of life with good grace and humour. I’m going to be grateful for the bad things and I’m going to be thankful for the good things.

I’m going to swear uncontrollably when the alarm goes off at 5.30am on January 2nd. I’m going to be pragmatic and realistic about how much change the new year will bring. I’m going to shrug my shoulders in 12 months when I think about all the things I was going to be.

Most of all I’m going to be me and I’m going to be happy, and if that’s the only thing I achieve then I’m going to have a good year.

Happy New Year, may it be full of magic.

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