My MS diagnosis took my life off course

I was 27 years old, and six months into a new relationship, when I was diagnosed with MS. I was so angry. I was supposed to work abroad. I was worried about my mortgage, I was worried about everything.

It sounds selfish now, but I also didn’t want to carry an extra person. I was already having to deal with my parents' reactions, and then my own. So I thought, "Why have that extra worry, let’s knock that on the head."

But thankfully, Owen didn't take no for an answer, hence why we're here now 30 years later. I'm glad that he was strong enough for me.

I wasn’t used to depending on anybody before MS

I’d got myself through uni, got myself a really good job. I used to be adventurous – I used to phone my mum up at the airport to let her know where I was going.

I was diagnosed four weeks before Christmas – I didn’t want to celebrate

I was working with the civil service, and I was about to go to America for two years on secondment. My apartment, car, everything was all sorted, health insurance and everything. I was supposed to fly out just after Christmas, but then I was diagnosed with MS. It was a kick in the gut.

I was as miserable as sin. I wanted to go away, but I couldn't. I didn't want to celebrate New Year. What would I be celebrating? I had MS. I still had a job, but I wasn’t going to be in sunny Florida, I'd be here in wet and cold England.

At the time I was diagnosed, I was paralysed from the waist down and my speech was impaired. I thought, "Am I going to be like this for the rest of my life?" It was scary.

My mum and I waited in A and E for hours. It was the first time in my life I’d ever heard my mum swear. She was a nurse, so she was really patient. She didn't think I had MS, she thought I’d had a stroke.

No-one really explained anything to us, they didn't tell me what type of MS it was. It took a long time to actually understand what it meant. There was no specialist MS nurse to talk to. And there was no Google then.

My mum helped me to get through my diagnosis

I was in denial. Why had this thing just messed up my whole life? I had a big life to live.

But my mum said something like, “Take your time. Just breathe, things are going to happen when they're supposed to happen.” I was always thinking about what had happened in the past. I’d had a really great job, and I was supposed to be somewhere else. I kept dwelling on that all the time.

Meanwhile, my mum kept shopping and cooking for me, stocking my freezer. It was lovely, but I kept saying, "Where am I going to store all this?" She got me a cleaner too, and told me to rest. She carried on like that for years. She just wanted to protect me. She didn't want me to be ill. And she didn't want me to worry about my illness either.

She supported me in everything, from when I was at uni to having children. She was so proud when I did research with Queen Mary University years later. It looked at how MS services could be improved for people from minority ethnic backgrounds. And I know she'd have been telling the whole of Trinidad, England, America when we won an award for our services.

I lost my mum three years ago. Being an only child it was like losing my sister, my best friend, my everything. It's weird without her.

She didn’t want flowers at her funeral, instead she had a collection for the MS Society.

Family life with MS

The year after I was diagnosed I fell pregnant with our first child, Da’shan. So everything just sort of happened and we got on with it.

I fell pregnant quite quickly, considering I was told I may not be able to have children at all. They didn't have the correct information then.

Dealing with MS relapses with small children

Six years after being diagnosed, when our daughter, Jada, was around nine months old, I had another relapse. It coincided with flu, and then pneumonia and sepsis. I wasn’t told I should have the flu or pneumonia vaccinations. It was tough.

But the worst one was when I fell and fractured my leg. That was disastrous. I was in hospital for three weeks. After that I was able to move into new social housing that was fully accessible. That was a bit of a wakeup call.

Owen’s been there for me since the beginning

It was Owen that would see me at my worst, out of everybody. But we tried to make it fun for the kids. So when I couldn't walk, he would hold me and say, “Me and Mummy are dancing.” To jazz it up a little bit.

Owen knows how I am. We give each other our space and balance each other out. But he can tell when something's wrong. He's the first to know if I'm not walking the same way I was walking a few days ago. He will say, "I think you need to get checked out."

It really lifts my spirits when I’m struggling with symptoms and emotions, especially since losing both my parents so close to each other. Now my husband, children and close friends are my rock.

Our two grown-up children Da’shan and Jada, and my one-year-old grandson live with us. We do quite a lot of childcare, which is tiring! But I can’t look after him by myself because I can't walk up the stairs with him, or carry him around. My hands aren’t that brilliant, and my walking is off.

I feel lucky that I’ve finally found an MS treatment that works for me

When I got a new neurologist in 2004, he introduced me to DMTs. At first I was a bit sceptical. Before MS, I hated taking medicine with a passion. But you have a different perspective in life when you have a family. My children were born with me with this condition. So I had to realise that, "Wow, I brought these two little people in my life."

I've tried lots of MS drugs, but I experienced serious side effects for several of them. I wasn't on anything for a little while, and then I had a really bad relapse. But thankfully I've been doing well on a treatment since 2018. I haven't had a relapse in that time.

I was thinking, is anything going to work for me?

I've had so many changes in medication I was just thinking, "Is anything going to work for me?" At my fifth one, I said to my neurologist, “If this doesn’t work, then nothing's going to help me.” But touch wood, it helps.

There's been a lot of progress in the medication that’s out there for people with MS, thanks to research. I wish they had it when I first got diagnosed. There was nothing like this for me then.

I’ve learnt to embrace my condition

I'm not saying I don't have my bad days, but I'm not allowing my MS to put me in a dark hole. I refuse to, I've been like that before.

For the first nine years, I just kept thinking "Why is this happening to me?" Especially when I started to have more relapses. It took me years to say, "Okay, I've got to embrace this now."

I’ve learnt to plan what I can do, what I can't do. I have to find places that are accessible, things which are near everything so it's not too far to walk.

But planned exercise is good. I go to the gym, and I swim there as well. When I'm in the water, my legs feel so much better. Luckily Owen can come with me because he's classed as my carer.  

I try to laugh through things

I've had falls due to my MS. I had one in the porch door - I went to throw out the rubbish. I don't even know what happened, but my legs just gave way and then everybody ran downstairs. I was just laughing my socks off, I always laugh. They said, “Why are you laughing? It's not funny". And I said, “Well, I have to laugh, I can't cry!"

I also help to care for my stepdad. He's got dementia. Having to deal with his needs, look after my grandson, trying to run the house, and with my own illness - it can be exhausting.

But without MS I wouldn't have what I have now. My old self wouldn't believe how positive I am. I try to have a positive attitude towards my MS - it might make a difference for someone that’s struggling with theirs. I'm so passionate that there’s something out there to help me. And that there’s something out there to help others, too.

For the ones you love now. For the ones you may love tomorrow. Please, give to MS research today.

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