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Navigating the ‘New Normal’ with MS

Getty Images / SimonSkafar

We have all been challenged by the coronavirus pandemic. As someone living with multiple chronic illnesses, including MS, those challenges have come at me many times since the beginning of the outbreak. We’ve come in and out of the lockdown so many times, our heads are all spinning. Though restrictions are easing soon, we likely won't be out of the woods for months to come. Even as we emerge from this current lockdown, the challenges that come with navigating the pandemic will continue for my family and me – only in slightly different ways.

Accessing routine healthcare

There are new processes for managing my routine healthcare, which started during the first lockdown and are now an embedded part of the system. Remote appointments are the norm, and new processes are in place to ensure a patient’s safety when they need to access medical care. There are still long wait times, though, and access to wider services like physiotherapy remains difficult.

Anxiety around attending clinic settings was one of the main findings of the Patient Information Forum’s Covid-19 Choices survey in the UK. As I continue to access routine healthcare, I want to be reassured that the correct procedures are in place.

Staying fit (safely)

Managing my health isn’t just about seeing a team of healthcare professionals. It’s also important that I continue to exercise and eat well. During the summer months I was racking up kilometres walking around my garden, and doing online dance classes. Even when the gyms reopened, I didn’t feel ready to return to gym-based activities, despite the social-distancing measures. Now, as the weather changes, I am having to become creative again.

The exercise bike at home (used as a clothes rail for many years!) has now been dusted off. One of the online dance sessions I do is run by someone who is also clinically vulnerable to COVID-19. Thankfully, she is continuing online for the foreseeable future. I’m glad because it means there are options available if I’m not ready to rejoin public classes.

Support for everyday living

When the country emerged from the first lockdown, and the rest of the world returned to (almost) normality, my biggest challenge was accessing basic support for everyday living. During the first lockdown, supermarkets used bags to deliver online shopping to lower the risk of contamination in the home. However, some supermarkets have now stopped this. It’s resulted in me switching my regular deliveries to a different supermarket that still gives me the option of bags.

It’s not disability- or chronic illness-friendly to expect someone to transfer their entire weekly shop, one item at a time, from the delivery pallets to their home. The first time I did it, it took about 30-35 minutes to move my shopping into another container! The ‘solution’ offered by supermarkets is to allow the driver to bring the shopping inside the house. This isn’t viable when my household is still trying to minimise contact with people.

When the second-wave began, with tiered systems and the threat of another full-lockdown, people started panic-buying. Every slot for online food delivery was booked. Essentials like toilet paper and pasta have been missing from my online order, and I don’t have the option of going in search of those items in an actual store. Plus, despite being on the priority list for online deliveries, I’m becoming stressed over concerns that I won’t be able to secure a slot for when I need it. My sister’s health conditions meant we qualified for council food parcels under the government’s shieldaing program. However, that program has been paused, so we don’t even have that back-up now.

I also have many other concerns about certain aspects of life that we used to take for granted before the virus:

How do we manage the car MOTs now that the COVID-19 extensions no longer apply to vehicles?

What precautions will the MOT centre take?

Can someone collect the car and drop it off? How much cleaning should we do afterwards?

We need to get some repairs done to the inside of the house. Is it safe?

What personal protective equipment will the person wear?

Will they understand that we are still shielding?

If I buy something online and need to return it, how can I do that if I can’t go to the post office? Have retailers put services in place for those of us who are still shielding at home?

The list goes on.

The fear of the outside world

Once again, lockdown restrictions are being eased, and I have a renewed level of anxiety about returning to the outside world. For months, we've been told to stay at home because we’re vulnerable, so it's hard to believe we'll be safe in the near future. The last time restrictions were eased, we found our way into another complete lockdown. My worries aren't entirely unfounded. While I’ve worked from home for many years already, I have friends with MS and other chronic conditions, and they’re fearful about returning to the office. This worry is particularly heightened if they work in settings where COVID-safe measures (like social distancing) might be trickier, such as in schools, or where there is a higher risk of contracting coronavirus, like healthcare environments. In those circumstances, people need to know that they have the proper support from their employers to help them feel as safe as possible – and this includes mental health support, too. People shouldn’t feel like they’re choosing between their health and their job.

I don’t feel comfortable going out because I worry that people won’t realise I’m clinically vulnerable and give me the space I need. I’m not alone in this. There are many people I know who are in a similar position and find venturing out difficult.

The sunflower lanyard scheme can help show people that you have a hidden disability. The Please Give Me Space scheme also allows people to understand that you need distance around you. However, we need greater public awareness of these schemes so that people know what it means and act accordingly.

Getting the facts straight

The need for quality, trustworthy and clear information is more important than ever before. While the rules during the national lockdown were applied consistently across the UK, the tiered restrictions for different areas were more complicated and confusing, making it difficult to calculate personal risk. Even the rules and guidelines themselves are pages long. They’re not easy to remember, especially if you’re someone with cognitive or memory issues, which is a real possibility if you live with MS. Some people I know have decided that the easiest thing is to stay in total lockdown rather than risk “doing the wrong thing.”

Keeping things virtual

Even as the days become brighter and warmer, I really hope the virtual world that opened during lockdown remains accessible. Some hospitality and culture venues like theatres, museums, cinemas and concert halls operated virtually, and I truly hope that online access doesn’t disappear when they’re set to reopen again.

Virtually, I've had the opportunity to see things I wouldn't be able to see in person. Usually, they're too far, too tiring, or they don't fit into my day. The other week, I joined the European Space Agency’s virtual open day and learned all about Mars exploration and space debris! I’m going to need things to keep my spirits up during the winter months, so I hope virtual events are here to stay.

Moving forward

Everyone’s experience of the pandemic has been and will continue to be different. However, there have been many common challenges, particularly among those of us living with chronic illness. Coming together as a community to support each other has been key in finding solutions to some of these challenges and keeping my mental health on track.

If there’s one piece of advice that I’ll be holding onto in the coming months, it’s to continue talking, continue sharing and continue seeking support. As Helen Keller, the American author and political activist, said, “Alone we can do so little; together we can do so much.”

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