By Fiona Boyd from Peeblesshire, who was diagnosed with Multiple Sclerosis in 2012 and is taking part in the Kiss Goodbye to MS campaign for the first time in 2018
Fiona Boyd
Over 100,000 people in the UK, and 2.3m people worldwide have Multiple Sclerosis (MS) and it’s a disease that affects twice as many women as men. It is usually first diagnosed when people are between the ages of 20 and 40, just when people are trying to start careers and families.
Being diagnosed with MS
In 2012, my neurologist told me they had found white lesions on my brain but that they didn’t know what it was. For the next six months I had to go back for more and more tests.
Despite there being a lot of information about MS in the waiting room, I never put two and two together. I think perhaps I was in denial. When I heard my diagnosis, as strange as it sounds, it was almost a relief as at least I knew what I had.
Living with MS
I have primary progressive MS, which means it gets worse over time. I often feel trapped in my house, or even trapped in my own bed which is really frustrating to say the least.
The worst thing about my conditions is the fatigue. It really holds me back and it’s hard because I used to be out enjoying myself. Now I don’t have the energy most of the time and have to do everything in small doses.
The other big challenge is concentration. The condition causes a brain fog and when it kicks in you can’t answer simple questions because you are trying to process how to actually move, let alone think.
The pain can also be quite difficult to manage, so I try to sleep through it as much as I can and I when I do wake up I usually feel a little bit more refreshed.
I like to stay positive and one thing I’ve learnt is to appreciate things more and to treasure every moment you possibly can. When so much of your day is wiped out, you really have to make the most of the times you’re awake and with it!
Getting involved in the fight to Kiss Goodbye to MS
For all these years, I’ve never been particularly vocal about MS or what it’s like living with it. Maybe I never thought that there was much I could do about it, at least not on my own.
So I was delighted to discover that there was a growing global community shouting loud and proud about MS, and bringing people together to raise funds towards finding a cure.
The campaign was called Kiss Goodbye to MS and to get involved all you have to do is take a selfie with your “game face” on, and then ask five of your friends to get involved. People are taking part from around the world and I loved the attitude of it and how empowering it was – it made me feel like a warrior queen. I’d encourage anyone reading now to get involved by visiting www.facebook.com/KissGoodbyeToMSGlobal
Together, we can make a real difference.
Kiss Goodbye to MS is the world’s biggest international community of people fundraising for multiple sclerosis (MS). Now with 15 countries taking part, this year fundraisers around the world are aiming to raise $1.5m. Kiss Goodbye to MS is an international campaign that enables people around the world to raise funds for vital research into multiple sclerosis (MS) and support people living with MS today. The global campaign is hosted by the MS International Federation. For more information visit kissgoodbyetomsglobal.org