As we head towards a busy time of year, many in our community look for ways to manage with the limited energy they have. We also know that these times of year can be difficult for many, with reminders of what you can’t do, missing out on experiences, and challenging family and relationship dynamics.
It’s important for family and friends to understand the physical and emotional challenges faced by people with ME/CFS and long COVID. Today we share some key points from our community, so their voices are heard.
I struggle with:
- Attending events with groups of people
- Shopping
- Concerts and parties
- Going to church
- Managing social and family responsibilities
- Not being able to do the things I used to do
- Kids activities, I can’t join in
- Not being able to help family
- Too many people around where I need to explain my illness
- Missing my life
- Getting excited
- Meeting new people
We have prepared this page to help provide some tips for getting through this period.
Plan ahead
- Minimise all non-essential activities until after January
- Shop online whenever you can (both for buying gifts and food) and in advance, where possible
- Organise enough medication to last December and January
- Ask for help with preparing food, gift wrapping and cleaning
- If you are going away, pack as much as you can in advance and ask for help
- Download and share Emerge Australia’s information about living within the energy limits of ME/CFS and long COVID in advance with people you plan to see. This may help them understand your limits https://www.emerge.org.au/how-to-support-your-friend-who-lives-with-me-cfs-or-long-covid/
Conserve energy
This is the big one: decide how you will spend your time over the holiday break. With limited energy, you won’t be able to do all that you’d like to. It’s okay to choose one main event, lots of small events or no events at all. Whatever you decide you have the energy for, focus on finding happiness and peace with yourself. Some suggestions include:
- Ask family or friends to meet in a place where you can rest when needed
- Have rest breaks during the day or between connections
- Spread gatherings over a few weeks rather than clustered together
- Meet online or with a small number of friends or family in a space that is manageable
- Manage your expectations of yourself: it’s okay to ask for help, or to not do things at all. Put presents in gift bags rather than wrapping them. Or ask your kids to help with wrapping. A gift wrapped from a small child has more love and care than anything professionally wrapped.
If you’re alone
Being alone over the holidays can be difficult. It can be a reminder of what you can’t do. Find comfort in the small things that bring you joy. You might like to:
- Send loved ones a card
- Listen to your favourite music
- Watch a movie or listen to a pod cast
- Reinvent family traditions in a low energy way
- Enjoy a special meal
Recover and rest
Recovery takes time and many people crash over the holiday season. This doesn’t mean you failed or that your health is permanently worse; it means you need self-care and rest. Some people find planning ahead for this is helpful, even creating a self-care kit and have it by your bed or in an easy place to access.
Below are some suggestions for you provided by our ME/CFS community.
Nutrition and hydration
- Easy to eat or prepared meals – soup, broth, grapes, salted popcorn, smoothies
- Small regular snacks
- Water bottle
- Electrolytes and extra salt with every meal (please consult your doctor increasing salt in your diet)
- Thermos with hot water or tea
Entertainment
- TV
- Computer
- Phone on silent
- Meditation
- Podcast
- Music
Movement & other tips
- Gentle stretches if able
- Mindfulness or circular breathing
- Rest in nature when able
- Swing in a hammock or lie on a bean bag
Comfort and pain relief
- Heat packs
- Heat mat or cold mat
- Pillows
- Blankets
- Weighted blanket
- Face mist
- Comfortable clothing
- Ice packs
- Time alone
- Moisturiser and lip balm
- Dimly lit room
- Ear plugs and eye mask
Emotional well-being
Understandably, most of the focus over the holidays is on the physical aspects of ME/CFS and long COVID. But looking after your emotional well-being is important.
Emerge Australia has information and resources to help you look after your wellbeing and cope with adjusting to living with a chronic illness, how to access mental health support if you need it, and crisis support.
For more information, please click here
6 simple tips for a safer air holiday gathering
Emerge Australia has recently partnered with The Safer Air Project and they have kindly passed on the below information.
The holiday season is all about gathering with loved ones, but none of us want to give (or receive) an illness! With some simple steps, you can help reduce the risk of catching something during your Christmas celebrations.
Even during summer, bugs like colds, flu, COVID, RSV and others are still circulating, taking a few precautions can help keep everyone healthy, but especially people with ME/CFS or long COVID, who may want to minimise the risk of becoming unwell for a range of reasons.
Making your event safer, healthier and more inclusive
- Take it outside! – Why not move the festivities outdoors? Many viruses are airborne, which means they spread in the air we breathe – this means outdoor events are much lower risk. A backyard barbecue or picnic in the park lets you enjoy fresh air and reduces the chance of spreading viruses.
- Plan for safer indoor air – Too hot (or cold) to be outside? No worries! If you’re hosting indoors, you can improve your indoor air quality. Opening opposing doors and windows, even just a little, encourages cross-ventilation while maintaining your thermal comfort. If you have ceiling fans, they can help by encouraging air circulation, and pointing a pedestal fan so it’s directed outside pushes stale air out and pulls fresh air in from the other side. It’s worth noting that some types of air-conditioner don’t bring in air from outside, while others do, so it’s important to have a source of fresh air too.
- Consider using an air purifier – Air purifiers can work to improve indoor air quality by trapping airborne particles, including viruses. If you have one, set it up in the main gathering area and turn on the highest setting to help keep the air cleaner.
- Suggest staying home if unwell – It’s the season of giving, but no one wants to give or receive a virus! Ask guests to stay home if they’re feeling unwell. Explaining to friends and family the reasons why can help them understand your concerns and encourage their support.
- Ask guests to test – Asking your guests to do a quick COVID test before turning up can reduce the risks. While they’re not failsafe, RATs taken over two consecutive days can increase the accuracy.
- Wear a mask – In addition to plenty of fresh air, a well-fitting, respirator-type mask is the best protection against airborne infections. While attitudes to masks can vary across the community, they are an important health tool, just like crutches or a wheelchair.
With these tips, you can enjoy the holiday cheer without worrying about spreading something more than good vibes!
