How exercise and music helps me manage my MS
'I thought I was going nuts’A year ago I started to experience a range of very strange, startling, symptoms: heat sensations in my left hip when I laughed, losing my balance, getting muscle cramps that made my fingers involuntary contort, and really severe pins and needles at the base of my lower spin. I thought I was going nuts.
When I found out I had relapsing MS – a year after my symptoms started – a part of me felt relief knowing what was wrong, but it took me a little while to take it in. I knew absolutely nothing about the condition, but at least I wasn’t going crazy!
I immediately started to manage my family’s emotions over my own. My mother took the news really hard, and I found myself reassuring her that I was going to be fine…and I meant it! But in the subsequent weeks after diagnosis, you have to make adjustments – you have to grieve the person you thought you’d be.
As a young guy, you think ‘what if I can’t keep up with my friends doing physical things?’, ‘what if I can’t protect my loved ones when I might need to?’, ‘what if I’m out with my girlfriend and we need to run for a train and I can’t run and we miss it?’ I was concerned about lots of practical, physical things that I think as young man you just assume you can do.
Finding a balance
Aside from mentally adjusting to life with MS, I’m still struggling to accept the physical challenges and am adapting to my new day-to-day pace.
If I have a couple of night’s bad sleep I get ill. I start to feel like I’ve got a cold, my legs go wobbly and hangovers hit me twice as hard. It’s hard to motivate myself and get moving. You then get worried you’re not going to get enough sleep, and then because you’re anxious about it you don’t get enough sleep and then you wake up in the morning and feel a bit weaker. You have to work to chill yourself out and if you can’t, you just have to accept it.
Late nights and drinking definitely have a negative impact, but because of my diagnosis I have a ‘devil may care’ attitude and think
‘I’m young, I may be in a wheelchair one day, so let’s make all the good memories now.’
There’s probably a balance to be found somewhere, but that’s something I’m still figuring out.
Managing my MS
I feel incredibly lucky, and thankful, to have had guidance and support from my family, girlfriend and friends. My friends especially have made me feel as though I wasn’t going to lose myself, or them.
Me on my own, however, I have two main anchors; music and exercise.
My diagnosis has become my stimulus for recording an EP of songs. I want to record them as a time capsule to myself just in case the day comes where I can’t play guitar (touch wood).
Exercise has been a practise for me since university but now, more than ever, it’s kept me really happy. Whenever my balance has been affected, I’ve just switched to using machines in the gym. On days I haven’t been able to run, I’ve been on an exercise bike. I can’t always move perfectly but as long as I can do something, I feel better for the rest of the day.
Forced to slow downAfter the initial shock, my diagnosis brought with it a number of positive perspectives. I’d always been a very high-pace person who thought it was a matter of pride to have an unforgiving schedule. I was often stressed and found it difficult to switch off even late at night.
Dealing with the fatigue that accompanies MS has actually forced me to slow down in areas of my life and made me assess where I should best be spending my energy. The slower pace has opened up a new world for me - I really enjoy walking and notice much more when commuting to work.
I have to leave more time to do the journey, but I arrive much more relaxed. I’ve also found that it’s made me much better at saying ‘no’ to things. My energy is limited now, so I have to plan how to spend it. I learned that from a YouTube video on ‘The Spoon Theory’ - I recommend it!
I don’t feel a sense of injustice about having MS. It’s not unfair, it just is.
I'm sharing my body with a proverbial jester that’s going to try and trip me up every now and again. That’s not to discount the challenges I’m sure I’ll come up against as so many have before me. But treatments are improving all the time, information on exercise, mind-set, and nutrition is developing and the studies are advancing. There are people in far more dire straits than myself, with MS and without MS.
The MS Society Forums are an absolute goldmine for answering questions and quelling fears. The community is active, nuanced and completely varied - you are guaranteed to find someone expressing the same fears and hopes that you are. That’s why I took part in Mudificent 7, a very wet and muddy obstacle course in August. to raise cash for people, like me, with MS
I raised £1250, which way exceeded my expectations! So a huge thank you to everyone who donated and supported me including my friends, family and even people I’ve known from my school and college days.
I’d like to imagine that the money raised might be the tipping point in funding of a researcher having that new breakthrough or used to pay for a brilliant day out for those with MS that need support.
Be kind to yourself
For other newly-diagnosed people, I’d say that however you initially react is an acceptable response and you should sit with it. Don’t feel as though you have to defend it. Allow yourself time to let other emotions come out over the next few weeks.
I’ve been a bit of a slow burner, random events and people have triggered emotions ranging from tears to gut laughs – none of which I knew were dormant in me.
Ask yourself, among all the adjustments you’re going to have to make - are there any nice ones? If you have to take it easy for a few days, what’s that boxset you’ve secretly wanted to binge? Now’s the time.
Do not place any limits on your aspirations.
The path to where you want to be in life may no longer be a straight line, but that doesn’t mean you can’t identify other routes to getting what you want out of life.
Now’s a perfect time to take aim, let go of any ‘deadwood’ in your life and to treat yourself kindly. There’s still so much happiness to be found in life, but don’t take it all on yourself!
Find out more about Billy on his YouTube channel
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