What have been the positive parts of the last year for you?
“The last year has given me the chance to spend more time with my family. I’m lucky to have such a great bunch of people at home who love spending time together. We’ve still been able to celebrate birthdays and other events, just in such a small and cosy way, which is the opposite of what we would usually do.
“The spare time I have is sometimes filled with simply doing things that are comforting and fun, because life is pretty stressful right now! It’s also given me the opportunity to try new things and undertake new projects when I have felt like it. I’m one of the people who started learning a language in lockdown and I can’t say I’m anywhere near reaching primary school level Spanish yet but I’m still enjoying it nonetheless! Singing and music has been a big source of happiness for me too. I’ve been able to continue remote singing lessons via Zoom, and it really boosts my mood mid week! Music has always been a great way to express emotion and relieve stress for me so I’ve really used that this year.”
What have been the negative parts?
“Like many people, one of the biggest things I’ve struggled with this year is not being able to see the people I love. Since I’m classed as an extremely vulnerable person when it comes to coronavirus, my family and I have been extra locked down through this process. This often meant that if someone we knew needed help we weren’t able to offer it ourselves since we weren’t able to leave the house. Even to do something like a trip to the shop. I’m somebody who thrives on social interaction, and whilst I love spending time by myself now and again, I’ve definitely felt a lack of inspiration and motivation this past year because of that.
“My state of mental health has varied a lot this year, and I’m sure many other people feel the same. But I think those of us who have chronic illnesses and negative past experiences with health in general have had a really tough time. The people who aren’t scared of coronavirus because they think they won’t get seriously ill might not understand, but when the odds are stacked against your health like they are for me it’s hard not to be anxious every hour of the day during a pandemic.
“Especially speaking as someone who has seen and felt what time in intensive care is like, how horrible it is to be a patient there and the experiences the hardworking staff have to endure, it’s frustrating to hear people say that they wouldn’t mind if they catch it. Experiences with ventilators are one of my worst life memories, so hearing about them every day on the news makes for a difficult time. I would encourage everyone to take the situation seriously, and to support others where you can.”
What have you learnt about yourself over the last year?
“My instincts have always told me that being positive is the most important thing. The idea that if we can just push through a challenging time and stay hopeful it’ll all work out fine. While that’s a lovely idea, it’s not really practical. This year I’ve learned the importance of processing your emotions, and that allowing yourself to be stressed, upset or angry can be really helpful. Not just for improving your mood later down the line but even with decision making. Recognising that you need time to sit with how you’re feeling before moving on has really helped me this year, since we’re living in a time that can be challenging to deal with.”
What sort of work do you do?
“I work as an administration officer within the public sector. It’s the first job I’ve had post meningitis that involved going into an office space and working with others. I was so used to being around people who knew my story and why I was disabled, that the idea of meeting a large group of new people seemed daunting.
“But it was an exciting prospect too! It was an opportunity to really grow the independence I had struggled to have the chance to test. A few people that I’m close to often reach out to help me with physical challenges too soon, and whilst it’s done with the best intentions, it has hindered my instinct and independence in the past. I’m slowly but surely trying to introduce the premise that unless I ask for help, I probably don’t need it. This is different for everyone, and it’s only in the past few years that I’ve felt confident enough to reserve help and shout up for it when I need to. If you know someone who has physical challenges, I would encourage you to have a discussion about this with them. Do they appreciate when you offer assistance in moments that they might struggle with? Or do they prefer to crack on and shout up for help as and when they need it?”
How has your work changed over the last year?
“Since the pandemic began, like many others, I have had to start working from home. This happened really early for me due to being in the ‘extremely vulnerable’ category. Being sent home from work for my own safety seemed so alien at the time when all my friends at the office were still there. However, the new introduction of home working has created such a resource for disabled people across the country. Being able to work or study in your home environment, where everything is accessible and adapted to your needs is great. I’m lucky to have a workplace that is accessible for me, and colleagues who are supportive of any adaptations, but not every disabled person has the same experience. The normalisation of working from home has created an opportunity for employers to offer support to their disabled employees in a new way.”
Has being part of B&A made any difference to you over the last year?
“Believe & Achieve has been a way for me to meet new people who have had experiences with meningitis in an environment that is judgment free, safe and supportive. The residential trips have always been my favourite part about the group but they have obviously been put on hold for now. What’s been great is that the virtual events that were planned by the team have maintained the same level of safety and open-minded discussion, and all the fun and games too! It’s also been great to see so many of my other B&A pals share their pandemic experiences and what they’ve been doing during lockdown. It’s comforting to know that we might not be able to see each other in person, but we can be there for each other remotely and know we’re not alone in this.”