A few days after completing a leg as part of a relay team in Belfast Marathon 2018, I had a cold sensation in my left leg.
Six years before, I had an incident where my left leg and side had gone completely numb. After a series of tests, an MRI scan found lesions on my brain and spinal cord. My neurologist had told me this could be a sign of multiple sclerosis but as I was back to feeling my normal self, he advised me to go and live my life.
I compared the cold sensation to the numbness I had experienced six years before. It wasn’t the same. They couldn’t be linked, I had just competed in my first running event. A niggling thought led me to my local GP who thought considering my history, a neurology referral would be the best option.
When I first met with the neurologist he reluctantly agreed to give me another MRI scan. My symptom was so minor and considering I’d been training for a marathon, a damaged knee was almost a guarantee.
No news is good news?
I waited months for the results. Surely, no news is good news but on Friday 2nd November 2018, my neurologist called with the diagnosis of Relapsing-Remitting Multiple Sclerosis.
The MRI scan had shown 3 new lesions.
I stood in the toilet block of my office trying to catch a breath. My thoughts constantly circled, ‘I’m a 25-year-old with a disease’. I didn’t know anyone with MS. I actually didn’t know anything about it at all. I put the thought to the back of my mind. If I ignored it, it might go away.
Life changing news, or not…
Although I had just heard life-changing news, my life hasn’t actually changed much at all yet. I’ve been able to go on living my life as normal which for me is a 40 hour working week, a part-time Master’s degree, an active social life, two personal training sessions per week and as many kilometres as my legs let me run.
It is only within the last few weeks that I have started to come to terms with my diagnosis.
Off work and at home with a chest infection, I scrawled YouTube for MS stories, trying to find somebody my age that I could relate to. That’s when I came across Shift.ms videos. I couldn’t believe what I had found. The first video that resonated with me so much was ‘The Commute’ video and the second was ‘Hidden’.
Firstly, because the commuters’ video didn’t show people who looked ill, it was people like me who were determined to show up every day despite their illness and secondly, because like the hidden video, I was hidden and well, still am.
I only share my illness on a ‘need to know’ basis. This is another area where Shift.ms has been a friend to me. I now have a full community where I can interact with people who get it. I have been able to gain so much knowledge about the illness itself, potential drugs, diets, ways to cope and tips to beat brain fog. Any MS-related thought or challenge I have, I know if I share with the online group, somebody will have either experienced it or at least, understand. The site has allowed me to interact with other runners, people in the same line of work and even people who are currently studying and balancing MS. People just like me.
The 20,000th member!
Shortly after signing up to Shift.ms, I found out I was the 20,000th member to join. In an instant, I had went from feeling like the only person in the world with MS to knowing I have the ability to connect with thousands of people in the same position. Of course, your neurologist and MS team can provide great advice and information with regards to daily living but there’s a real difference chatting directly to an individual who has personally experienced it.
The site gives me the reassurance that there are many others facing similar challenges to myself. All thanks to the Shift.ms, I have chatted to people living as close to a few miles from my house to as far away as Israel. Before I was diagnosed, I knew nothing about the illness whatsoever and with the help of 20,000 people in the same position, I have now been able to build a global support network.
A safe place to open up
On the site, I have been able to find a safe space and for me, it’s currently the only place I’m willing to open up and chat about having MS. Everyone I have interacted with is very aware that everyone’s MS journey is completely individual. Personally, this is so important to me.
Moving forward, as I experience new symptoms and start to explore options for medication, the site will be where I turn for advice and support. I’m inspired by every single member and how they deal with the way MS has affected them personally. I believe using the site has led me to be more accepting of my own MS and put myself first, this could be the smallest step like moving away from my computer screen when my eyes have had enough. The site has taught me I don’t need to play the hero, we’re all battling against Multiple Sclerosis together.
Other guest blogs: