It was different for me as it was so sudden. Within three months of my first symptoms I was in hospital. I was working at the Royal Mail and one of our medical advisors assessed me and management was automatically informed, so the decision was out of my hands.
My boss did try really hard to create a new role for me, but the advisor said that stress really didn’t mix well with MS and stress would have been a component of the role. They really looked after me though, I got a final pension salary for life at the age of 35.
But at the time I was angry – I didn’t want to give up work. My career was just taking off, and I had a lot more to give. In hindsight I can see it was the right decision. And I’d already had a life of hard knocks, so I was able to pick myself up and get on with it. It took around nine months to get my head around it – what I couldn’t pursue, what I had to do in different ways.
The simple things were the hardest
Some things I could do, but a lot I had to let go. It was the simple things that were the hardest – like holding a pen with a tremor. It was quite big thing to get past – you know if people give you a form and ask you to ‘just fill it out’. I had to say to people ‘if you want it to be legible, you will have to do it for me’. It’s a menial task and people take it for granted.
It’s also about acceptance – I did the best I could and actually I’ve not looked back. I always say in my voluntary roles ‘take me as I am’, and that’s done me no harm. I like people and I’ve been able to be involved in the community. They’ve become like an adopted family to me. Having that understanding, that peer support means a lot. We are all different though.
MS doesn't change who we are
That diagnosis is a massive blow – I think it’s like the fight or flight reaction and you go one of two ways. When I talk to people that are newly diagnosed there is that fear of wheelchairs and the fear of the unknown, of what’s coming down the road.
I think anything that can be done to make people understand MS, is a good thing. And also to make people understand that it doesn’t change who we are, or our ambitions and dreams, though they may be different than we first imagined.
This MS Awareness Week (19-25 April 2021) we’re saying #LetsTalkMS.
MS can be tough, and for many people talking about it can be challenging. Help start a conversation about MS – share your story
Ways to talk MS
Our online sessions and webinars are a great way to connect online. You can also join the conversation at Facebook, Instagram and Twitter. And our MS Helpline is here for you, offering emotional support and information.