Note: if you prefer to download this list as a pdf you can download it by clicking here.
- Make a list of whatever you can do in advance and a schedule for completing your tasks with plenty of wiggle-room.
The holidays are often jam-packed with tasks. Sit down nowish and make a list of everything that needs to get done. If you’re newly-diagnosed you might be overly optimistic about what you can get done in a day. Remember to take your old activity level and divide it into quarters in order to arrive at a reasonable starting place.
Include plenty of days where you do nothing at all, to accommodate moving things around for crashes and bad days.
The holidays can mean spending all day cooking, which is simply not feasible for most people with ME. Look into what can definitely be made a few days beforehand (cake) and what is best the day it’s served (pie) and plan accordingly. (You may seriously consider just ruling everything out that cannot be prepped in advance.)
You can check out our Pinterest board on holiday and winter cooking, grouped by prep time by clicking here.
- Think about the time after the holidays. What do you hope is your best memory of the holidays this year?
It’s a radical act to relax during the holidays, breathe into them and take your time: to prioritize what you want this holiday season rather than scrambling to meet others’ expectations. Many people with chronic illnesses have already been faced with this challenge just by virtue of being ill and may be quite good at it by now.
But it’s easy to get caught up in the frantic energy of the holiday and ‘unlearn’ our hard-gained wisdom. Name one or two things you hope to experience this holiday, realistically, and make sure you prioritize those things in the list you created in #1.
- Make a ‘to go’ medical kit for yourself for get-togethers.
If you’re minor or moderate you might not have done something like this yet. I use a clear pencil case for mine and put it at the bottom of my bag. On the list: OTC pain medications like aspirin or paracetamol, and a topical anti-inflammatory crème; digestive enzymes or charcoal; Mucostop or something for good respiration / allergies.
- Solutions for food sensitivities:
Bring your own food to gatherings with a polite message explaining that you love others’ company and will be bringing your own food so you can be safe as well as social. Alternately, eat right before leaving for a gathering.
I have often eaten a full meal before a gathering where I suspected there will be few things I’m able to eat due to food sensitivities. It has worked out pretty well – you can pick at the food present (still be seen enjoying what’s on offer) and not get sick.
- Take a separate car to events where possible.
If you’re able to drive, be sure to take your own car to events rather than carpooling. Then you can go home whenever you like. If you share a car with family, consider Lyft and Uber in urban areas, or ask other attendees (in advance) to ferry your family home if you need to take the car.
- Decorate simply.
In our holiday decoration Pinboard, we went for things that are simple, homemade, or rustic. If you’re anything like my family, you have giant plastic bins of decorations for Christmas that take enormous effort to put out and put away each year. If so, consider changing your aesthetic and go minimalist.
And it’s okay to forego decoration entirely, or limit it to the rooms that make you happiest.
One blog mentioned keeping your imitation tree decorated, just wrapping it in garbage bags or plastic and storing it that way to unwrap next year. It takes away the decorating and putting-away effort that’s so strenuous. If you haven’t done this before, consider starting this year.
- Assign tasks.
If you have friends and acquaintances you’re close to, chances are they’ve asked you “if there’s anything I can do”. It’s easy to flounder at this question, especially if brain fog is one of your symptoms. You know you need help, but with what? Consider creating a task list, especially for the things that are challenging but have a social element, like baking, decorating, and wrapping gifts.
- Make a quiet space and delineate it clearly to guests.
If get-togethers are held at your own home, consider creating a quiet space that you ask others not to breach with a sign. Make sure that it is well-equipped with water, emergency meds, and pillows and blankets. The important part is the explanation to friends and family that you might need to retreat there if you don’t feel well, and not to disturb you if you have. It’s good to put up a helpful sign on the door for those who don’t hear or forget your request.
If you’re moderate and are invited out, you can also ask a friend to create such a space. This may sound like a daunting ask, but often it means a comfortable recliner, pillows, blankets, and water bottles in a quieter, darker space. While it’s an out-of-the-ordinary ask, it takes five minutes to set up and will not challenge your host, though I would only suggest you make this ask with people you know well.
- Make (some of) your own gifts.
The holidays can be incredibly costly. We’ve created a great Pinboard for easy do-it-yourself projects that are still pretty and elegant enough to make good gifts. However, we suggest you don’t take on more than two or three projects per holiday season. It’s very easy to overestimate our ability to work when the work is fun, and it’s easy to forget that crashes happen!
- “Where’s your wish list?”
Brain fog saver: we’ve got a great Pinboard full of good gifts for people with chronic illnesses. Check it out, write down a few of the things you like that are on the board, and send your requests with a link to the Pinboard to friends and family.
We pulled a lot of suggestions from A Chronic Voice, who has a really thoughtful gift-giving guide for people with chronic illnesses here.
We’re especially fond of monthly or seasonal subscriptions, and created a whole section of this Pinboard just for those! Crate Joy has a clever guide to subscription boxes for chronically ill people here from which we pulled some suggestions, though we thought subscription boxes were a great idea and have added a lot more to our list.
You can see our list of subscription boxes, including murder mystery boxes, arts and crafts boxes, book-and-bath boxes and more by clicking here.
- If you’re alone this holiday season…
There’s a great guide to what you can do when spending the holidays on your own by creakyjoins.org. It’s a list of low-energy activities and thoughts that neutral rather than heavy to read.
Also, check out the article on things to do when you’re chronically ill besides watch TV.
- If you need support…
Remember that there’s a whole community of people with you in spirit if not in the flesh. Many are going through what you are. It can help to remember you’re not alone.
Check out our Pinterest board for coping with the holidays, too.
From our #MEAction family to yours, we hope you have a wonderful, warm, and happy holiday and remember: your community is with you every step of the way!