Holiday Gathering Tips For ME & Long Covid: Pacing & Infection Control
Before The Event Infection Control
-As guests to isolate as much as possible in the week leading up to the gathering
-Let guests know that masks and tests will be mandatory and whether you will be providing them, if possible provide high quality n95 respirators with headstraps
-Build a corsi-rosenthal box or purchase an air purifier
If you are not hosting the event, email the host about their covid precautions and get the highest quality respirator you can, considering reusable p100 respirators.
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Before The Event Pacing
-Rest agressively in the week leading up to the event
-Communicate your limitations to the guests or hosts in advance especially ensuring that there will be a quiet bedroom available for you to lie down in
-Communicate any dietary restrictions to the host in advance
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During The Event Infection Control
-Everyone should wear a well fitted n95 mask with headstraps
-Run rapid tests for covid, flu, and rsv (they make combined ones) but do not accept a negative test as proof that someone is not infected as there are high false negative rates
-Consider eating alone or with only your immediate family. When you take your mask off to eat (even outdoors) is the time period you are most likely to be infected. Ensure you wash your hands or hand sanitize between taking off your mask and touching your food.
-Have conversations in a well ventilated space wearing masks.
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During The Event Pacing
-Try to be lying down as much as possible, if there is a sofa or bed available use it and let guests come to you one at a time or in small groups.
-Take time completely alone to rest in between conversations.
-If you tend to get carried away with conversation set a timer at the start of each conversation for a manageable time frame (anywhere from 5min to an hour depending on severity) when the timer goes off, conversation is over.
-Consider using a heart rate monitor with an alarm. Let your loved ones know that when the alarm goes off you must rest.
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For Housebound Patients
-Consider whether the event can be held in your house so that loved ones can visit you in your room or you can pop out for a short duration.
-Consider placing a daybed in the main room so you can stay where the action is while lying down. Loop earbuds and dark sunglasses can help with overstimulation.
-Make sure you have noise canceling headphones and earplugs available if your room doesn't block out noise well from the gathering space.
-If your family is not able to come to you consider asking to attend via zoom.
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For Bedbound Patients
-Consider the pros and cons of hosting the event at your house only do so if:
--You trust your cargivers / family to be able to clean up completely after themselves.
--You feel confident in tolerating the noise and bustle of the event.
--You will be able say hi to visitors or your caregivers desire to see special visitors.
-Post a notice on the door to your room reminding visitors to*
--Be mindful of conversation length and volume
--Wear a mask at all times
--Be mindful of lights
--Avoid perfume
--Be mindful of allergens (pollen, pet hair etc.)
*Note: these are just suggestions, customize to your needs
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For Those Who Cannot Attend
Try to make the day special at home this can mean
-Having a special meal prepared or asking to have leftovers brought to your house
-Watching a holiday movie or tv show you love and have been looking forward to
-Ask a career to help decorate your space with christmas lights, a mini tree, ribons, paper snowflakes etc.
-Attend via zoom or spend your energy that day calling loved ones
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Moving The Date
Because of how drastically different holidays with ME often must be to traditional celebrations, many families simply aren't willing to change their plans for us.
Even worse, our normal caregivers may be unable to perform their normal tasks on holidays due to the celebrations or severe patients may be left home alone. This can turn a holiday into an antiholiday where simply surviving the day is difficult.
In these cases it may help to choose a different date to celebrate your chosen holiday. This will be a day when your caregivers are around and the day can be catered to your needs, not the needs of the group.
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Surviving The Holidays
Whether you have a toxic family, no family, the perfect loving and accomodating family or chosen family or anything in between the holidays can be a difficult time with ME. You should know that other people with ME and invisible illness see the strength and tenacity it takes to get through the holiday season.
Remember if attending an event, hosting an event, or any other holiday action is bringing you more stress than joy strongly consider simply opting out. Spend the holidays doing things that will bring you joy, not stress and a nasty crash. Don't sacrifice your long term health to look normal for 1 day, even a significant one.
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Holiday Gatherings & ME Key Points
-Test and mask at all holiday gatherings. Wear high quality n95 masks with headstraps.
-Consider eating seperately as this is the highest risk activity.
-If attending in person make sure there is space to lie down whenever possible and a quiet room to retreat to.
-Consider attending via zoom or not at all. If it causes more stress and pain than joy, do not feel guilty to opt out.
-Even if not attending any gathering do small things to make your day special.
-If your caregivers are celebrating the holidays without you pick your own day to celebrate when it can be centered around your needs.
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The holidays can be a difficult time for people with Myalgic Encephalomyelitis and long covid. With an ongoing pandemic of COVID-19 and energy limitations preventing normal socialization, participation and normal holiday gatherings can be hard or impossible.
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This post aims to provide harm reduction guidance on how to have the safest possible holiday gathering for the millions missing with MECFS and millions more with long covid. Taking infection control measures is also an important step to avoiding further long covid cases to deal with in the 2024 holiday season.
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It is important to remember that while a special day for many, holidays are just one day. The long term repercussion of severe overexertion can take months or even years to overcome. Do not risk your long term health for a single day.
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While some overexertion during the holidays is to be expected, it is essential to plan the event in such a way that you have access to rest and reducing stimulation whenever you need it. Even if you are "mild" and expect to be able to mostly participate in the day, ensure there is somewhere for you to go rest if you need it. If you are more severe, plan the event with rest built in, and ration the time you spend with relatives, prioritizing the parts of the day most important or accessible to you.
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Two way masking is the best way to prevent infection during the holidays. Unfortunately, many holidays revolve around group dining where masks are not present. Outdoor dining can help mitigate this risk, but for high risk individuals like those with ME / CFS / Long Covid / immunosuppression it may simply not be worth the risk.
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It is also important to note that mask quality matters. This is especially true if anyone in your party is not masking. Wear a high quality n95 or p100 mask or respirator with headstraps and fit check it if possible. Additionally setting up good ventilation and air purifiers can help to lessen the risk of infection.
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So Happy Holidays to everyone, and remember the best gift you can give yourself is the preservation of health.
