It’s a strange feeling being unable to stand on your own. When something you’ve always taken for granted is slowly taken away. Now, after living with multiple sclerosis for over 11 years, support is more important than ever.
A slow diagnosis
I first experienced MS symptoms as long as 30 years ago, but I had no idea what it was.
I woke up one morning and felt numbness and tingling all down my left side, but I also had a stressful job in London so when I returned I didn’t have time to think about it or go to the doctor. It was probably a good thing as I was in my late 20s and would’ve been rather alarmed if MS had been mentioned.
I’ll never forget it. In 2008 I woke up one morning and thought I’d had one too many drinks!
I was looking at the computer screen and I could see double of everything. I even drove my car and the road seemed to be cut into two. I thought I'd better get my eyes tested and went to see optician.
The optician mentioned optic neuritis, this is where the nerve that carries messages from your eye to brain becomes inflamed.
Although this condition is linked to MS, not everyone who has it will get MS. I was referred to a neurologist and given an MRI scan that revealed lesions on my brain. To be honest, the neurologist wasn’t too alarmed and thought everything would settle down. But it didn’t.
MS gnaws at you
The thing with MS, is that it keeps gnawing and my symptoms started to get worse.
I experienced painful pressure around my waist, it felt like a snake strangling my middle also known as the MS hug. My balance and walking got increasingly worse and in 2017 I was told I had secondary progressive MS.
I think my lowest moment was realising that I couldn’t ski anymore. I’ve been skiing since I could walk. Due to problems with my vision and spatial awareness resulted in a nasty fall on the slopes on holiday.
This was really upsetting for me. I didn’t really understand why it had happened. I just thought ‘I’ve lost it. I can’t do the sport that I love and have been doing all my life.’
Living with MS
In 2015 as work was becoming more demanding, MS was having a major impact on my thought process and my mind was just in a muddle.
But I’m still the person I was before my diagnosis. I just have to think a little bit differently about what I can and can’t do.
I can no longer be impulsive. I have to plan every journey that I’m making because I can’t make journeys now instinctively on my own.
I try and keep as active as I possibly can, which obviously has its limitations. I use a stick and find it difficult to walk more than 10 metres unaided. But I do have a little pony called Cola and still able to ride her.
My sister has MS
There’s 18 months difference between my older sister, Yolanda, and me. She was absolutely fine until about six years ago when she was diagnosed with primary progressive MS.
Yolanda went into a spiral of disability and loss of movement and mobility. It was much more accelerated than my MS and now she uses a wheelchair.
We have no history of MS in the family so when she was told she had MS we just thought ‘What are the chances?’ We actually worked out the odds and there’s more chance of winning the lottery!
Having MS has brought us closer
We talk to each other every day and having MS has bought us closer. When we were growing up, I was sometimes the irritating younger sister. Now we have a fantastic relationship and support each other through the highs and the lows.
My husband has been brilliant. He just holds me up. With our son Ed, they just know what needs to be done to help me and want me to live my life as much as I did before MS.
There are so many brilliant researchers and scientists working to stop MS. I just want everyone to get behind this campaign as I really believe we are so close to finding the right treatments for people, like my sister and I, who have progressive MS.
Will you join Team Stop MS?
We’re the closest we’ve ever been to treatments for everyone. We can see a future where no-one needs to worry about their MS getting worse. To get us there we’ve launched our biggest fundraising appeal yet and we need your help.