Stephanie Singleton , Occupational Therapist & Abbey Hughes , Psychologist
15 Apr 2020 | ~4:01 Engagement Time
The coronavirus (COVID-19) pandemic has become a constant presence in our lives. We have experienced rapid shifts in our daily activities, including how we work, socialize, exercise, eat, pray, receive medical care, and care for others.
For many people with MS and their support partners, this shifting of activities is not new. People with MS and their loved ones often have to make major changes and adjustments in their daily lives, and often with little notice. Living with MS requires a balance between preparation and flexibility – a need to plan for the future, while also adjusting to unexpected changes in the present.
Finding this balance is an important skill in MS management; however, as with any skill, it can take some time to develop, especially during periods of high stress.
Fatigue and sleep disturbance are common in MS and can worsen during periods of stress. With the rapid spread of COVID-19, MS management skills are quickly being put to the test. To complicate matters, fatigue is also a symptom of COVID-19, the seasonal flu, and the common cold. Given that MS fatigue can fluctuate from day to day, and within a single day, people with MS may be questioning whether a sudden worsening of fatigue is related to MS, COVID-19, or to something else.
It’s important to clarify that although worsening of fatigue and sleep disturbance are common to MS and COVID-19, there are other COVID-19 symptoms that are not common in MS (e.g., respiratory symptoms). These symptoms are listed on the CDC website, the NMSS website, and can be discussed with your physician if you have concerns about whether you should be tested.
So how does one manage fatigue and sleep in the time of COVID-19, or during the next crisis? Here are some general principles for fatigue and sleep management to keep in mind.
Some stressors occur in an instant. Others, like COVID-19, persist for several months. Coping with a long-term crisis like COVID requires endurance, and endurance requires pacing. Just like running a marathon or completing a big project, taking on small tasks at a consistent, manageable pace, increases likelihood for success.
While isolated at home, you may be tempted to start multiple new hobbies/projects or commit to numerous phone/video-based social events. Try to resist this urge.
Each of these new activities requires energy. Start small, ideally adding only one new task at a time. Take breaks before you get tired to prevent burnout. Set clear boundaries with family and friends, noting that you care about them and want to continue to maintain these relationships throughout the crisis and beyond.
Fatigue and sleep issues fluctuate from day-to-day. For fatigue, it can be useful to keep a diary of your lowest, highest, and average fatigue levels (e.g., on a scale from 1 to 10). Take note of what activities make your fatigue worse, and when you feel your best. Are there certain triggers for your fatigue that you can avoid or reduce? For sleep, using a diary to keep track of your sleep quantity, sleep quality, naps, and caffeine use can also be helpful for identifying what sleep schedule works best for you.
Crises like COVID-19 can really throw off our schedules and routines. Keeping a diary can help us be more mindful of and more likely to stick to our routines. Diaries can also help us remember details from days or weeks ago, long after we’ve forgotten. Having this written record helps cope with memory issues common in MS, and keeps the information accurate.
We are spending a lot more time at home. It can be so tempting to use the bed for all kinds of non-sleep activities – eating, working, watching TV, emailing, worrying, etc. It’s important to keep your bedroom and bed a place that promotes sleep.
Doing other activities in bed makes it less likely that you will be able to sleep, even when you want to and are tired. As much as you can, try to limit all other non-sleep activities to outside the bedroom.
You’ve done this before, or at least something a bit like this. Think of the hardest thing you’ve ever had to endure in your life. What strengths, skills, or characteristics do you possess that got you through that time? We all have strengths that allow us to cope with unpresented challenges, including COVID-19.
Think about what you do well, and how you can continue to do those things now. You may need to adapt and do those things in a different way to make it work in your current environment. Doing things that you enjoy and do well will help build confidence, resilience, and the belief that you will get through this difficult time.
Remember you are not alone. As a person with MS, you are part of a community. You might not have previously reached out to this community, but perhaps this experience is an opportunity to do so. Organizations like Can Do MS and the National MS Society have wonderful supports to connect you to others living with MS.
You also have many other identities (e.g., parent, child, friend, co-worker, musician, artist, etc.) besides being a person with MS. This is an opportunity to connect with others with any number of your shared identities. And you don’t necessarily need to join an MS support group to get support.
However, if you are experiencing mental health symptoms, talking to a mental health professional by phone or videoconference can help. You can find providers in your area through the NMSS Navigator tool.