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The lowest point for me was the adjustment at the beginning. I felt frustrated and resentful because it seemed I was being called ‘expendable’. It felt like there were some people who were happy to accept an attitude of “only the vulnerable are going to die”, in return for them to carry on as normal, so I had some anger and fear. People living with MS should still be allowed to live a valued and valuable life!
I think the NHS have done well under immense pressure. I’ve had a number of virtual or telephone appointments and I haven’t felt ‘let down’ in terms of health services, although I have missed some physio appointments. I was scheduled to have an operation 8 months into the pandemic, and up until that point I had not been anywhere outside my home. Suddenly, I was going into hospital and was surrounded by people. It was such a shock for me to leave my comfort zone, I felt very exposed.
Unfortunately, I have progressed now, and the noticeable difference is my walking capacity. On a good day two years ago, I could walk 50 to 100 metres. Now I can walk at best 20 metres – and I think that is partly due to missing some of my healthcare appointments, such as physio, during lockdown. I am still very actively trying to slow my progression. Wheelchair Rugby had been a huge part of my life – before COVID I’d play once a week for three hours – and in the last 18 months I’ve only been able to play three or four times, which has kind of broken my heart as it is a huge passion of mine.
But I have found other outlets: I’ve always tried to raise money for MS charities but of course I couldn’t jump out of a plane or do a Tough Mudder like I’ve done before, so I invented a ‘virathlon’. It involved a lot of wheel-chairing up and down my patio. I ended up doing something like 30km and raising over £5,000!
I’ve started to have some carer support to help me bed down for the evening. With me and my wife working and both of our children being home-schooled, it was a challenge managing my MS without any help. The availability of a little bit of counselling and then eventually some physical support was welcome.
Asking for support is a hard step. It’s just like when you insert your first catheter or receive your first wheelchair. It’s another psychological barrier to get over. Care is a good thing once you accept it! You fight against all these signs, and then you realise you should have gone for it earlier.
Overall, I’ve managed to stay positive throughout all the restrictions, which has really helped my mental health. I spoke to my mum and close friends regularly; these chats were vital for me, and I was really active in seeking them out. I think the motivation that I had to exercise and keep fit was invaluable, and social media was also very important: there’s a big online community, especially within Shift.ms, which can be a good support network.
I think my advice for other people living with MS would be, firstly, find ways to stay active and fit. It’s important to have an outside interest, whether it’s stamp collecting, watching Netflix or doing jigsaws. I would also say it’s key to closely monitor your mental health. I’ve learned to look at myself and ask, “How are you, Mark? Are you OK? Are you really OK?”. You can do that externally with counselling or you can talk with friends – but find a way that works best for you. I always make sure that somebody is
checking in on me, because sometimes it can be a tough old world.
“I can still play the game.”
I play wheelchair rugby for the Bournemouth Lions, and I'm playing against a lot of people who are stronger and faster than me because they only have lower body injuries, or spinal injuries, or versions of cerebral palsy.
So, they are beefcakes racing around, and I've got a progressive illness, but I'm motivated to try and catch up. I never will catch up, but I'm less slow than I was and that's wonderful. Last year I did a Tough Mudder. I've jumped out of planes as many times as my wife will let me. Doesn't mean everybody has to play wheelchair rugby and jump out of planes, but if you find your passion, life can be so good.
I was diagnosed in 2007. I probably had ‘MS light’ for four or five years and then my mobility really went downhill. So I went from walking, to walking drunk, to walking with a stick, to crutches, to where I am now, which is a walker and wheelchair. I've gone into a secondary progressive MS.
I think every father is going to say their children are the most important things in their life. I had to adapt the way I can be a good father to my sons, but I think I manage. I have a very funky wheelchair that gets me off-road so I can still adventure on the beaches, I can still go into the woods, I can still throw snowballs at them. And we’ve done an awful lot of reading over the years.
My wife and I have just celebrated 20 years of marriage – she has been wonderful through my MS journey, though I know it has been tough for her.
I work for a charity called Shift.ms, which is all about helping people with MS, especially the newly diagnosed. I do public speaking when I get the chance, and I campaign an awful lot on social media. As my MS has progressed, it has become more valuable to me on a personal level because when I am stuck at home, unable to get out to events, I have a support network of people that I've never met, but that I depend upon.
I think there are a lot of clichés around MS. Once people see you in a wheelchair, they don't imagine anything else that's going on with you.
There's fatigue, and pain, and all sorts of fun and games that go on behind the scenes. But I think people also feel sorry for us, and well, thanks for the sympathy and all that, but I'm still having fun and being productive. I think the most important thing is your life's not over. It's just different.
I don't want to be seen as that bloke in a wheelchair. I’m a dad, a husband, a friend, a campaigner. And a middle-aged rugby player!
“The brighter, the better.”
“I do everything people say you shouldn’t do.”
“I love being out there.”
“I’m proud of what I’ve achieved.”
“This doesn’t stop me being a dad.”
“If you’re not happy with yourself, you’re not happy.”
“I see life through many lenses.”
UK | February 2022 | 180138