The COVID-19 pandemic has impacted people all over the world, but those with medical conditions have found themselves disproportionately affected.
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As a result, anyone living with a health condition or disability has been forced to exercise extreme caution when it comes to COVID-19.
Healthcare access has also become more of an issue for many people during the pandemic, with so-called “nonurgent” appointments, surgeries, and treatments reportedly being delayed, with medical resources instead being diverted to handle COVID-19 cases.
The impact of missing appointments or having treatments postponed means that some people aren’t getting the support and care they might need.
I’ve experienced this firsthand. As a person with multiple sclerosis (MS), my day-to-day life has changed in unexpected ways in 2020.
Here’s how the pandemic has changed how I manage my MS, and what I’ve changed as a result.
Since being diagnosed with MS in 2014, I’ve been treated with the disease-modifying drug natalizumab, which is administered every 4 weeks via an IV infusion.
When first prescribed the drug, my MS was classed as “highly active,” but since starting treatment, I haven’t had any relapses and my condition hasn’t significantly worsened.
The fact that my medicine has effectively halted the progression of my MS is something I’m hugely grateful for.
When COVID-19 started to spread, hospitals were forced to divert their resources, and as a result, my treatment was delayed from every 4 weeks to every 8 weeks.
While this is deemed safe from a medical standpoint, my MS symptoms have worsened with the extended interval dosing. I’ve experienced more pain, muscle spasms in my legs, and mobility issues — none of which posed a significant issue for me prior to these changes.
Even though these symptoms are likely temporary, managing them has been a huge adjustment.
During the pandemic, my usual pain management techniques, such as extended rest periods and over-the-counter pain meds, stopped working.
At first I wondered if this was because my normal routine had been disrupted. It soon became clear that my pain was worsening as the period between my infusions lengthened.
Symptoms such as painful muscle spasms in my legs, mobility issues, and nerve pain in my arms started flaring up worse than ever.
My consultant suggested trying a different medication to manage my pain, and while I’ve yet to find something that works for me, I’m grateful to have an open dialogue with my healthcare provider about possible options to try next.
Exercise can have a multitude of benefits for people with MS, such as improving cardiovascular fitness and overall physical health, decreasing fatigue and depression, and improving memory.
With group workouts canceled and gyms closed, most people have found themselves exercising in their own homes or outdoors during the pandemic.
Prior to COVID-19, I attended two fitness classes a week and regularly used the treadmill at the gym. I knew that continuing my workouts was essential.
While exercise isn’t right for everyone with MS, I’ve always found it therapeutic for managing pain and building muscle strength, especially as MS can cause a lot of body weakness.
Since the start of lockdown, I’ve moved my workouts to my living room. I’m lucky enough to have a spin bike and have been streaming classes with an app that tracks my progress.
With worsening symptoms, I haven’t been as active as I was pre-pandemic, but not having to rely on a gym membership or a group class has allowed me to exercise on my own schedule — and without putting myself at an increased risk of developing COVID-19.
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“Every day brings new challenges. We are all faced with an overwhelming lack of control, and our best approach is to ride the waves, use our resources well, seek help and ask for help, don’t let our ego get in the way of what we need, and most of all, be kind,” says Victoria Leavitt, PhD, a neuropsychologist at Columbia University Irving Medical Center and the co-founder of eSupport Health.
Easier said than done.
While regular exercise has always helped me manage stress and anxiety, the added pressures of the pandemic and the need to spend more time at home have forced me to adjust several aspects of my day-to-day life.
I’m the last person on Earth who’d ever subscribe to the idea of “screen breaks,” but the endless dirge of days without socializing or places to go meant that I was relying a little too heavily on streaming services, which started stressing me out.
Instead, I began listening to audiobooks to give my eyes a break. When I can’t get to sleep, setting a timer on my audiobook helps me relax.
Although it’s taken some time, I’ve also gotten back into reading.
Taking myself away from screens for at least part of the day gives my brain a chance to rest and unwind, which has got to be a good thing right now.
As a disabled person, I try to be as independent as possible — but this has become much more difficult during the pandemic.
Obviously, when a person is experiencing worsening symptoms, they’re likely to require more help from others, be it medical professionals or friends and family.
“For people with MS, we know that resilience is a key factor that contributes to function,” says Leavitt.
While it’s not always possible to feel positive when your body low-key feels like it’s falling to pieces, there’s strength in sharing your difficulties with others.
In 2020, I’ve found it more necessary to discuss medication, pain management, and physiotherapy with my consultant and MS nurses, and I’ve also needed to lean on family members more than ever.
This can be extremely challenging when you’re chronically ill, especially when you’re used to proving you’re “fine” to those around you.
The limitations imposed by the pandemic, and the huge lifestyle changes caused by it, have made me come to terms with the fact that I need more help right now — both mentally and physically.
Sometimes, we all need extra help, and there’s no shame in asking for it.
Amy Mackelden is the weekend editor at Harper’s BAZAAR, and her bylines include Cosmopolitan, Marie Claire, ELLE, The Independent, Nicki Swift, Bustle, xoJane, and HelloGiggles. She’s written about health for MS Society, MS Trust, The Checkup, The Paper Gown, Folks, HelloFlo, Greatist, and Byrdie. She has an unhealthy obsession with the Saw movies and previously spent all her money on Kylie Cosmetics. Find her on Instagram.