Even small things can help make history

I was diagnosed in March 2022. I count myself quite lucky that my diagnosis process happened quickly. My first symptoms occurred on a Friday at the end of February, and a week later, I knew I had MS.

Like most people I hadn't heard of it before, and I didn’t know anyone with it. It was really shocking and worrying at the time. We didn't know what we were dealing with.

The hardest thing was sharing with the girls that I had MS. They were only four and six. They were really young and I was a busy mum – I didn't know what my life was going to look like, or what my future was going to look like. That caused me quite a lot of upset and anxiety. 

It took about a year for me to really accept it, to get used to my life with MS.

My MS changed everything

I had to change career because I couldn't teach anymore. I couldn't walk at first, I didn't have any strength. I struggled with my stamina and my fatigue, my concentration, my speech. It affected my career and what I always wanted to do. Luckily my workplace was amazing – they said there a new role was coming up – a family support role, and they offered it to me. It was really fortunate.

I went from working full time, to doing two days a week. That's all I could manage, but eventually, with the right disease modifying therapies (DMTs) and a good diet and lifestyle, I managed to increase my working hours to four hours, three days a week. I then have two rest days before I look after my girls at the weekend, which I really need.

Learning what helps me

I still have my highs and my lows, but it's a bit more consistent. I've become more knowledgeable of this new body. I've learned what works for it, what doesn't, what I need to do, what I should avoid – whether that's foods or whether it's activity. And I just give myself more periods to rest. I’ve always said MS doesn't suit my personality because I've always been quite an active person.

I had a 110 miles per hour sort of life, and then to have MS – it forces you to slow down. It was completely against what I was used to. I've had to adapt the pace of life.

I had to come to terms with my diagnosis before I could help others

I went through all the stages of grief. Then my husband said ‘other people are probably going through this too’, so I started sharing how I was feeling online. It just grew from there as people started saying, ‘oh, I'm feeling this way’ or, ‘thank you for sharing that’. I've felt I need to carry on with it because even if just one person can relate to what I'm saying, it feels worth it. If I share a little bit about my life, then hopefully some people won’t feel like I did.

I felt really lonely when I was first diagnosed, not knowing anyone else with MS, or anything about it either. But the messages I’ve got from people are motivation to carry on.

When people say ‘you've really helped me here’ or, ‘that was really informative’ or, ‘I never thought of it that way’, they’re little boosts to show I'm making a difference.

They're helping me as much as I'm helping them. It ends up being two-way relationship because I learn every day.

It’s not just managing MS – there’s cultural challenges too

I also run online group meetups for Asian MS and manage their social media accounts. We support and advocate for people in the community with MS, but also create a safe space so they know they’re not alone. It’s not just MS they're managing – they're managing cultural challenges as well – the barriers that come with the South Asian society and cultures. It’s trying to normalise it a little bit more and to create that community.

It's that whole hush hush society where you don't speak about anything. You don't complain about anything, you don't talk about problems.

I didn't want to be that sort of person. I want to speak out because the more we talk, the more we normalise. I found that by volunteering for Asian MS, everyone was on the same sort of wavelength.

Research and the future of MS

As a mum, I'd be really hopeful if researchers were to find the causes of MS and how to prevent it. I know the odds are small, but I’m worried about the possible hereditary side - the thought of passing it down the family tree.

I’d also like more understanding as to how it affects different cultural backgrounds. It's all about research for our next generation. We can make a difference for the future.

I feel proud that people feel the MS Society is a worthy charity for people to focus their energies, their time, their effort. I'm really honoured, because it's personal, isn't it? Whether you're affected by MS or not, I want to get across that even the smallest thing can make the biggest difference.

Research will stop MS. Be part of history by donating today.