Written for the MS Society. July 2019.
I thought to myself, as an ordinary looking guy walked out of the disabled toilet, ”I’ve got a good mind to say something to him”. Happily I talked myself out of saying something, but it left me thinking. What if he did have health condition? Maybe I just couldn’t see it? He could be suffering too. I reckon the writer of the toilet sign ‘Not every disability is visible’ started my brain cogs turning.
Mike Carpenter was diagnosed with MS back in 2008. It’s fair to say he is looking good for his 33 years (I trust you don’t mind me saying that Mike!) A mix of Mavenclad, healthy living and some good fortune keeps him well. And he expresses his gratitude for this by stretching himself to the limit – showing the newly diagnosed that MS needn’t be the end of an active lifestyle. So as well as fundraising ‘hero’ for the MS society, he’s also on the MS Society committee in Stockport (lead fundraiser of course!)
An articulate 6 footer, you would never guess that he had this condition at all (there’s me stereotyping again). Working full time as a manager in a local telecommunications firm and living with his girlfriend Rachel in Old Trafford, Mike is an ordinary guy. He has, however, (cue the music) done something extraordinary. He recently competed in the 10 in 10 challenge (climbing 10 Lakeland peaks in 10 hours) whilst £2,200 for the Cambridge Centre for myelin repair.
I caught up with him a week after the event. Mike continues,
“I’m still feeling pretty rough because it was quite a hard endeavour, one which I wasn’t quite prepared for. Training was decent but nowhere near good enough. Then as soon as I got home I started my new MS therapy, Mavenclad. It’s not supposed to impact you badly although it can increase fatigue for some – and it seems like I’m one of those people”.
I’m sorry to hear that. How long did you train for the event?
“Nowhere near long enough! I said to my physio, ‘I think I underestimated how much training I needed to do’. Having done previous things in the past and having been prescriptive about following the proper training plan. I was like “I’ve been playing football for a couple of years, I don’t really need to do that much training“.
“I picked up an injury doing one (training) hill climb and never really recovered. If I was to do it again I would sign up a lot earlier and train for a lot longer!
So onto the event.
“There were six of us in our team. We got up at 5 and got all of our stuff together. Registered at 6.15 and set off walking at 7am.
“We were told that we had to get the halfway point, in Buttemere, for 1. We got there for about 11.30 and stopped for some lunch.
“I was in a fair amount of pain by that point so I made the decision to stop. But I then changed my mind and decided to carry on. Then later on, I missed the last breakaway point so we had to find our own way back.
“I did eight of the peaks. And it took me 12 hours 15 minutes. It was beyond me to carry on doing the final two.
Still a massive achievement. It sounds like MS hasn’t impacted your life too badly.
“I’ve been asked this question a few times and if anything, it only impacts for the positive. It gives you a kick up the backside. You can either retreat into yourself – and you don’t want to say or do anything about it – or it gives you the enthusiasm to say ‘well I’ve got to try and keep myself fit, i’ve got to keep my mind active and I’ve got to start going out and doing these things’. What else am I going to do?
So what is your diagnosis?
“My official diagnosis is rapidly evolving relapsing remitting MS. The attacks are constantly happening and they’re not isolated into one area. So because of that, the neurology team are keen to ensure that I am on effective treatment.
And what medications do you take?
“Mavenclad is the fourth treatment that I’ve taken . The other ones were Gilenia, Tsaiabri and Copaxone. Those treatments’ possible side effects are, respectively, liver damage, infection in the central nervous system and sore injection sites. My susceptibility to these made me unsuitable for the treatments.
So how does your MS affect you?
“I’ve been having some visual disturbances, get quite a lot of neuropathic pain and fatigue. You sometimes don’t appreciate just how much you are working around things. For example, I have to write down everything in my calendar because if I don’t I will forget. You don’t realise that, after you’ve had it for so long, all these little changes you make in your life are overcoming challenges.
You have a sore looking wound on your arm.
“This was about 10 hours in. I was walking down to try and exit the route. We had to find our way back onto a path – and the rocks that we were trying to scramble over were wet. My boots were caked in mud because they had sunk right into a bog and my legs went from underneath me.
“It doesn’t hurt generally but because the scabs are flaking off, if I brush against something, it hurts. Hills aren’t for me anymore!
And this brought me back to my musings of the start. Had I said something to the ordinary looking guy coming out of the disabled toilet, I would have been the surface to Mike’s scab. Painful annoying!