Being diagnosed with Multiple Sclerosis was a strange experience.
My neurologist had told me they had found white lesions on my brain but that they didn’t know what it was. I had to go back for more and more tests over the next six months, and although there was lots of information on MS in the waiting room I never put two and two together. I see now that I was in total denial.
So when I finally found out I had MS, it was almost a relief as it could have been something even worse, like a brain tumour.
I should add at this point that one of the other disabilities I have is complex regional pain syndrome (CRPS) and at the time, the neurologist told me it was on the same spectrum as MS, making it hard to tell where one ends and the other starts.
What it’s like living with MS
Over 100,000 people in the UK, and 2.3m people worldwide have MS and it’s a disease that affects twice as many women as men.
I have primary progressive MS, meaning it gets worse over time. This means I often feel trapped in my house, or trapped in my bed, which is really frustrating.
The worst thing is the fatigue. That’s what really holds me back and it’s hard because I used to be young and fun and out enjoying myself; partying and working hard. Now I simply don’t have the energy most of the time and have to do everything in bitesize pieces.
This means I can’t plan to do a full day and have to make sure I have time for a little catnap here and there. Everyone I know is used to this now, but that wasn’t always the case and it took some getting used to working around me.
The other big challenge is concentration. MS causes a brain fog and when the fatigue kicks in you can’t answer simple questions because your body is just trying to process how to actually move, let alone think.
Even just transferring from the sofa into the wheelchair can be an ordeal! The pain can also be quite harsh, but the best thing for that is just to rest. I try to sleep through the pain as much as I can and I when I do wake up I usually feel a little bit more refreshed.
For all that I like to stay positive and one thing I’ve found about having MS is that, because you are not awake for as long it makes you appreciate things more. It becomes about treasuring every moment you possibly can.
Telling the world
In my opinion Multiple Sclerosis doesn’t get as much attention as it should and I want to send a message to everyone that you needn’t shy away from people with MS.
I have good days and bad days, but even on a bad day, I will always welcome the chance to help the world understand more about MS so that together, we can fight to end it.
That’s why it’s so inspiring to be part of the global Kiss Goodbye to MS movement – because 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