It looks like you are using an older version of Internet Explorer which is not supported. We advise that you update your browser to the latest version of Microsoft Edge, or
consider using other browsers such as Chrome, Firefox or Safari.
Before the pandemic began, my mindset was always “be the best I can be”. I found the initial stages of lockdown difficult and paused my volunteer work to concentrate on my health as it was, and still is, my main priority.
Unfortunately, my MS care suffered over the course of the pandemic. My MS centre closed, my assistants could only help with the minimal level of essential personal care. All of my daily activities stopped. I know that physically I have deteriorated. At the beginning of the pandemic, I could walk a few steps with support whereas now, 2 years later, I can’t. I also know that I've gained weight because I can’t eat and prepare the fresh food I normally would have without the support of my PAs (physician assistants).
Surprisingly, for me the hardest point during the pandemic hit me after vaccine rollout began. I thought that after my vaccination things would begin going back to ‘normal’. Although I had received my vaccine, I had to wait for everyone else to catch up. Everything seemed to be staying the same, and things weren’t going to change for a while.
You have to have a positive mindset though.
It is very easy to beat yourself up over these things, and I think everyone during the pandemic has felt guilty in some way. I remind myself that this wasn't a choice, and we are all trying to get through it in the best way we can.
I am very proud that I have managed, in my own way.
I am lucky to have a huge support network of family and friends. During lockdown, my loved ones were checking in on me to see how I was. I am very grateful for that; they have helped to keep me afloat mentally.
Gardening has always been an important outlet for me, even more so during lockdown. I used to wake up at the crack of dawn to tend to my garden. It’s my favourite activity, and it kept me going. I felt so satisfied when people complimented me on it while they were passing on their daily walk. It meant a lot to me, and I know it meant a lot to them too.
During the pandemic I've learned that I can do everyday chores, such as cleaning the bathroom and the kitchen. I have also learnt that it's important to get help with those tasks if you need to, to have more time and energy to concentrate on the things that give your life meaning: the interesting, the fun, the fulfilling, and the things that make you… you!
I think the pandemic has helped us see what we should prioritise in our lives.
We’ve seen how the world can change, and that it does get better. Things are certainly going to get better.
"The brighter, the better.”
I have always gardened. I was five when we moved from London to Buckinghamshire. When we looked around the house I went to the end of the garden, and said, "when we move here, this will be my part of the garden, won't it mummy?" And she went, "yeah, sure." And I've gardened ever since.
As my MS progressed and I became more and more disabled, I had to change how I gardened. Instead of having things in flower beds, I moved them into pots and baskets so I can reach them.
It's really important to me. When I moved to my new flat three years ago, the first question everybody asked was, "do you have a garden?"
I don’t have a garden, but I've taken over the car park, which is lovely because it's not just me that gets to enjoy all the colour and flowers, it's everybody.
What I didn't realise was how important it was for the people in the block opposite, because so many of them are housebound. I've had so many relatives come over and say what a difference it makes for their parent or grandparent.
I've always been a flower girl. Because of the MS, I only see bright, saturated hues. I can't see pastel colours, so my taste in plants is very bright. That is mostly bedding plants, and a few annuals like lilies.
I was finally diagnosed with MS when I was 28. My life has changed massively for the better in many ways. Whilst my disability has progressed, my life itself is so much better.
My doctor said: "never ever turn on daytime TV. You have lots to offer. If you're going to sit around and watch TV, I'm not signing you off work." I said: "okay”, and got on with the rest of my life.
I'm really hoping people take away from the More to uS campaign that they can find ways of doing the things they love. They might have to adapt, but there are ways people
can carry on doing what they love.
“The brighter, the better.”
“I do everything people say you shouldn’t do.”
“I love being out there.”
“I’m proud of what I’ve achieved.”
“This doesn’t stop me being a dad.”
“I can still play the game.”
“If you’re not happy with yourself, you’re not happy.”
“I see life through many lenses.”
UK | February 2022 | 180137