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I’m thrilled to share this guest post by Jennie Spotila. She is one of the top patient advocates for myalgic encephalomyelitis (also known as ME/CFS, which replaces the outdated and misleading name “chronic fatigue syndrome”). Like me, she came down with a viral infection and never recovered. For the past 25 years, she has worked tirelessly, mostly from home, sometimes from bed, to educate people about the illness and, most importantly, to try and secure funding for research. Her friendship sustains me personally and inspires me to help others. I’m so happy to be able to share her thoughts with you.
Almost six months have passed since the first confirmed case of COVID-19 in the United States, and it has been quite a journey. We’ve been through a national shutdown, and everyone has suffered hardship and loss. Now summer is here, states are lifting restrictions, and everyone just wants to get back to normal.
Unfortunately, not everyone can. Many people must continue to shelter in place because the risks of infection are still so high. Older adults and people with certain underlying medical conditions have a greater risk of severe disease or death. Even people who are never hospitalized can remain sick for months (the self-named long-haulers).
I have been sheltering in place for almost four months and counting. I’m in a high-risk group, so I will have to continue this self-imposed lockdown until there is a vaccine. If you are in a similar situation, you might be wondering how to cope with staying at home for such a long and indefinite period of time.
Lockdown has been easier for my husband and me because it’s our normal way of life. I have myalgic encephalomyelitis and have been largely housebound for more than 25 years. Five years ago, my husband suffered a stroke after a neck injury, and he became largely housebound as well. We’ve already been through the struggle of adjusting to a shut-in life. What we learned may help you cope with spending most of your time at home, even if those around you are getting back to normal.
I hope what works for us will work for you, but everyone’s circumstances are so different. Even if my suggestions don’t resonate with you, you might be able to use them as a starting point for your own solutions.
1. Take care of your mental and emotional health. Depression and anxiety are real, and undoubtedly exacerbated by the pandemic, the economy, and the social justice protests. If you are in distress, reach out to your mental healthcare provider (if you have one). You can also get support from the Crisis Text Line by texting HOME to 74174 or calling the National Suicide Prevention Lifeline at 800-273-8255.
2. Get the information you need to make informed choices about what is safe. Complete shutdown orders were easier to cope with in one respect: everyone was under the same restrictions. If you did not work in a life-sustaining business, you stayed home. Decisions about what was safe or unsafe were made for us, and we were all in it together. Now, everyone has to navigate those decisions based on their individual circumstances and local government guidance. It’s hard to know what to do. There are lots of things to consider, including how many people you will interact with and for how long. You also have to think about how essential an activity is, such as a medical appointment versus a family party. Take the time to think through how to best protect yourself from exposure to the COVID-19 virus, even if that means not doing things you really want to do.
3. Maintain your social relationships in the safest way possible. One of the hardest things about sheltering-in-place is not seeing friends and family. Kids miss playing with their friends. Singles miss dating and meeting new people. Families miss spending time together. If you have high-speed internet, then I hope you have already been enjoying video chats with family and friends. If not, then phone calls must suffice. Get creative to find solutions that work for you. I have one friend who takes a nightly walk with her neighbor, staying at least 6 feet apart. Another friend brings her coffee to my house and we visit through a glass door. Some families are forming “pods” by joining with another family to socialize exclusively with each other and practice social distancing with everyone else. Regardless of your personal situation, it is essential to find ways to maintain your connections with others.
4. Be patient with other people’s choices, and their reactions to yours. My husband and I are only leaving our home for life-sustaining activities, and we’re not allowing anyone else in our home. Some of our friends are doing the same, but others are not. I have found it very challenging to watch people I care about make choices about social contact that seem risky compared to mine. At the same time, not everyone agrees with how cautious we are being. This ever-shifting mix of approaches to social distancing means that we are not able to see most of our family and friends in person, and that is very hard. Yet vigorous disagreement and frustration have not been productive. The only thing that helps me is to cultivate patience with myself and others, and to hope they will be patient with me.
5. Create or enhance the structure of your routines at home. Routines feel comfortable, and yours might need updating now that you are staying at home. Establish a rhythm to the day or week by deciding in advance when to do certain activities. Laying things out in advance will help you make those choices with intention and balance. For example, I always practice the cello in the morning, and the rest of my day flows from that. Use whatever degree of detail in the schedule that feels right to you.
6. Take a fresh look at household chores. I got sick just two months after meeting my husband, so I’ve been disabled for our entire marriage. We divided household chores based on our abilities, and that worked fine until he had his stroke. I was surprised how much more work it was to have him home all day, and I tried to do it all myself. We eventually sat down with a master list to figure out how to divide the work, taking into account our unique limitations. If your household is staying at home, then you are dealing with more food prep, more dirty dishes, and more clutter spread around. Ask what division of labor among household members makes sense now, especially since there may be more people able to help. This is a great opportunity to teach kids to take on more responsibility, too. Make conscious choices about who is responsible for what chores, and when. Everyone will be happier if the work is spread as fairly as possible.
7. Find the right balance of space and quiet. I’m an introvert; my husband is an extrovert. I need solitude, and it was hard for me to adjust to having him home all the time. My husband was used to constant social interactions, but his disability makes that impossible now. He needs more noise and distraction than is comfortable for me. We had to work out the right balance for both of us through trial and error. If you need quiet, try retreating to a separate room, or claim a space to take in turns with other family members. Maybe your family can negotiate “quiet hours” without TV, music, etc. to give everyone a break. The most important thing is to recognize and honor everyone’s needs for quiet or noise and work out ways to share the space.
8. Change something. Staring at the same stuff and same four walls for weeks or months can feel maddening. I know every scuff on the walls, every ding in the tile, every flake of paint. It’s boring, and it can exacerbate feeling stuck in a rut. I have found that making a small change in our space can make a big difference. Rearrange photos or books on a shelf. Switch out a few items on display. Drink your coffee out of a different mug. Set up your laptop in a different room for a couple of hours. Sit in a different chair to read. It may sound silly or artificial but try it. Your brain will welcome new stimuli, and you might be amazed at how fresh even a small change feels.
9. Have fun. Whether you are home alone or in a shared space, make sure you do something fun every day. Make it a routine time or activity. My husband and I have a cup of tea together at 3 p.m. It's a chance to just check in on how we're feeling. In the evenings, we listen to a podcast or watch TV together. We select long series or themes for our own TV marathons (which gives us a goal and eliminates the question of what to watch). And of course, you aren’t limited to people in your house. Have a virtual happy hour with co-workers or synchronize movie night with a friend. Doing something fun every single day is key. It’s something to look forward to and a time to connect with the people you care about.
10. Experiment. Look at what is working and what isn't, and then try out changes as if they are scientific experiments. We've tried all kinds of things, like changing the times we do certain chores or examining how we track our schedules. We experiment with how we structure our days, separately and together. We tried using one room for reading and another for TV, and it worked so well that we’ve kept doing it. Everything is on the table to discuss and test. This collaborative process of refinement, along with the flexibility to change things, has made it possible for us to be happy despite being shut in.
Staying at home for an extended period of time is not very fun, but it doesn’t have to be a miserable experience. You have the skills to make it easier to live this way for however long it lasts. The challenges are puzzles to be solved. Try different things, keep what works, and discard what doesn’t. We’re not in control of COVID-19, but we can make the best of where we are.
