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Amy in front of a waterfall

MS, COVID-19 and life after lockdown

Amy Simpson

Before I was diagnosed with MS, I knew nothing about it. I felt so ignorant, I knew no one who had it.

I started to get a few symptoms. Then I experienced problems with my vision and I felt unsafe driving, so I started getting lifts to work.

In April I had 20/20 vision and by May my sight had really deteriorated. I was told by the optician that I’d either had a stroke or had MS.

After that, my fiancé strong-armed me into going to hospital and already had a bag packed for me. That was when the neurologist told me I had MS.

Coming to terms with my MS diagnosis

I spent a week in hospital and was put on a high dose of a steroid medication that really helped. I learned how to eat, walk and talk again. I changed my work, my hours and my priorities. 

There was definitely a process of grief after receiving my diagnosis – there was a lot to get my head around and to there was a lot to learn about my condition. 

But then once I’d had that time to grieve, I was able to make start making choices to make myself as healthy as I could be. 

I started doing lots of exercise and I’d never been more active. There have been lots of positives in being diagnosed with MS. It’s made me put things into perspective. I’ve still got a life to live and I’ll make it the best it can be.

Since being diagnosed with MS, my mental motto is while it’s in your control, take positive action. I know I won’t feel my best every day and some days I won’t feel as positive, but it’s also ok not to be ok. 

If I’m having an off day, I find it helpful to acknowledge how I’m feeling and that any negative feelings or low mood will only be temporary.   

Talking to people about my MS

It was testing accepting people’s emotions when they first heard about my diagnosis, but my MS doesn’t just affect me. Some people were quite concerned while others weren’t too worried. 

It made sharing my experiences quite difficult because there’s no pattern as to how MS will affect me or how it affects other people.

I got lots of useful information from the MS Society and watching the Stop MS video gave me something to relate to. I shared it with people and said who was like me and who wasn’t like me. 

Although talking about my MS was difficult at first – my fiancé, friends and family have all been incredible and really supportive of me. 

Coping with MS during COVID-19

When the first lockdown happened, I got less contact with friends and family. They had their own priorities but we accept and respect that we can’t be there for each other 24/7. 

There was also confusion around whether or not I should be shielding based on a DMT I was taking. I was asked to shield for 12 weeks and was shielding for around 9 of them.

I was mentally getting to the point where I really wanted to get out more. I challenged the decision and was told that the decision for me to shield had actually been a mistake. It was confusing and stressful, and sadly could have been avoided.

My fatigue levels were impacted a lot by lockdown, so I was really glad to be able to go outside and do some exercise again. 

Life after Lockdown Wellbeing Sessions

During the first lockdown, I started to feel a bit lonely and out of it. As much as my family and friends are supportive, they can’t empathise with MS. I wanted to speak to people on my own team who understood how I was feeling. 

I looked on the MS Society’s website and saw the 'life after lockdown' wellbeing sessions and that I’d be able to chat to people who’re in a similar situation.

I gained so much from the sessions. I didn’t feel lonely anymore and felt grateful to hear other people’s experiences. It also made me feel better about myself, that I could help others too. It helped me feel connected in a way that I hadn’t felt for a while. 

Working from home during the pandemic

Since the first lockdown began, I’ve been working from home and I’ve been told this will continue until at least March 2021. I decided that I’d feel more comfortable working from home permanently, so my employer has said they will review this. 

The uncertainty around returning to work was making me feel anxious and the wellbeing sessions really helped me put my worries into perspective. People with MS aren’t more likely to get COVID-19, and I won’t be the only person who’s nervous about returning to work.

The wellbeing sessions have given me the tools I need to stay calm. Whether that’s having a plastic bag with all the things that help me feel safe (hand gel, masks etc.) or grounding myself through mindfulness when my mind wanders or I begin to panic. 

Although I don’t know if I’ll need to stop working from home, I feel less anxious and worried about the idea of returning to work. There will be lots of measures to help keep us safe and I now know there are lots of things I can do too to help me feel safer.