Facets of ME: Centering ME During the Holidays

Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays. Facets of ME is an educational feature where we dive into one aspect (or facet) of living with ME. We have previously covered PEM, cognitive dysfunction, temperature dysregulation, loneliness, and travel

It’s that time of year again. The weather turns cold (or hotter for our southern hemisphere friends) and holiday expectations start piling on from commercials, movies, friends, relatives, schools…well, you get the idea. A lot of societal pressure. It can be especially hard to stop, rest, and pace this time of year. We created the 12 Days of Pacing last year in December to help us focus on general pacing at this time. This year, we are focusing exclusively on pacing through the holiday season. 

First, check out our pacing guides if you have not. We offer adult and pediatric versions. It will help you pace through the season.

For many of us, getting through the holidays feels like a minefield of the usual stress of  relationships and financial pressures on top of a massive increase in infectious illnesses and demands on our precious little energy. People with disabilities are more likely to live in poverty or live on a set income which can make it difficult to save much money adding to the usual financial pressure. So yay, doesn’t this sound like fun? I am not painting a rosy picture but here at #MEAction we can be honest with each other. This can be hard. I recognize this is not the situation for all members of this community, but it is the truth for some. It makes it important that we can help smooth the path and support one another! Let’s find a way to make this season better. 

I tried to organize the information into categories but they do overlap a bit. Feel free to scroll through to what you are most interested in! 

Categories:
Baking

Communication

Grief

Home Care

Infectious Illness

Loneliness

Traditions

Travel

Lived Experience Wisdom AKA Community Tips

Other Resources

Baking

Thank goodness an #MEAction community member shared a blog post from King Arthur Baking Company recently. I rarely bake anymore but we do cookies at Christmas and a pie or bread around other holidays. My personal baking tips are to use mixes when you can, have help, and local bakeries also need our patronage. 🙂 

 I do appreciate that an advantage of baking is being able to substitute ingredients that work better for me when baking so look into sugar alternatives, gluten-free options, and avoiding MCAS triggers, etc. 

Please take a look at these wonderful suggestions written by Emma Hayes (shared below), a disabled food systems professional who is “passionate about making food and cooking accessible.” She has an MSW focused on developing community food systems. The article was written for the broader audience of all those with the symptom of chronic fatigue — not particularly ME/CFS. I also included a link to their tips about baking with brain fog. Both articles are very helpful. 

The advice is divided into three sections: stay in tune with your body, adapt your space, and avoid unnecessary labor. There are so many good tips that it was hard to pick some samples but here are a few I think will work especially well for those with ME: 

#StopRestPace is for baking too! 

“Acting proactively, versus reactively, is one of my biggest disability learning curves. So plan ahead! Create a baking schedule that clearly blocks off time for sitting down, eating, and drinking, which ensures you’ll take a break before your body forces one. Try adding natural pauses via recipes with a rise or rest. Use mobility aids, compression clothing, and other assistive devices before the pain begins to help preserve energy.”

I might just have this one on my holiday wishlist. 

“Sitting while I cook might be my favorite adaptation, and apparently I’m not alone: Every person I spoke to for this article recommended a kitchen stool, particularly for stationary tasks like chopping or stirring. A height-adjustable stool with wheels makes it easy to adjust to your counters and roll between surfaces to give your body a break.”

I also like this one from their brain fog tips. My phone has so many scheduled reminders and timers! 

“Keep track of time … literally: Time everything and mark your timers, whether that means with a pen and a piece of painter’s tape, a sticky note on the microwave timer, or labeling the timer you set in your phone.”

  1. Tips for conserving energy in the kitchen
  2. Baking with brain fog

Communication

We received this request from community member Else: “Can you create a list of things we can say to family and friends. Before, during, and after, to help us vocalize our PEM and needs. Lacking a better word for this. But that’s exactly the point. People with ME, like myself, need some help with words to  explain to others what’s going on for us and what we will need to do if symptoms arise, before or after etc.”  

First, start with the pacing guides and our #FacetsOfME article on PEM shared at the top of this page. There is good language and explanations to use there. One of my favorite sections is the “exertion does not equal exercise” portion. I think that is important for people without the illness to understand. Exertion is ANYTHING that stresses or strains the system.

Segment from the pacing guide. Text reads Exertion does not equal exercise. It lists the triggers for PEM as physical, orthostatic, cognitive, sensory, emotional, and environmental

Next, consider using one of the popular analogies floating around the community. Spoon theory was created by Christine Miserandino who has lupus to help explain chronic illness limitations. An alternative might be the low battery/ faulty battery analogy. Click the links for the back story on each one. 

Maybe you can send those to the relevant loved ones so you are all using the same language to discuss your holiday abilities. After that, perhaps some of these phrases might be helpful. Here are some phrases and graphics you can use as a baseline for helping to explain your personal experience.

Grief

Julie is a community member who shared this question with us when we were gathering tips for this Facets of ME: “How do we deal with the grief of missing out on our family gatherings?”

I think it is important to take time to acknowledge the grief that surrounds the loss of beloved traditions and special times with loved ones. I sure wish there were some magic answers. I have lived with ME since 1996. That is a lot of time to grieve, adjust, grieve again, readjust, and on and on. I will say that you can very much find joy in the “new normal” but it will not be what it was before and there will be times where the joy is not there to be found. There is no right way to grieve. We all approach it differently and how we approach it changes individually as well. 

I want to share a few resources that might be helpful. I do think working through it with a good counselor is ideal but of course it is not always accessible. Check out this helpful information about finding a therapist.

You can also check in with support groups to talk it through with those who understand. There are many active support groups online. You can find our groups here. Living with ME, Pregnancy and Parenting with ME, Seniors Connect, and Caregivers are all active and available. 

If you are considering suicide, please reach out to a hotline and speak to someone. There are both speech and text lines available. Find numbers and links here

Other resources on grief: 

  1. How to cope with grief during the holidays
  2. Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Home Care

Throughout the holidays there can be extra pressure to have a well-kept house with decorations that look like they came out of a holiday movie set. I am admitting here that this is not something I can do. At all. Period. I am not just on the struggle bus when it comes to home care — I captain it and own my own garage of struggle buses. However, there are some good resources to at least help it be less overwhelming. I really appreciate the work of KC Davis with Struggle Care. The six pillars of struggle care have helped me to view my lack of home care differently. I am listing them here but please go to the original site and check all of the resources.  

  1. Care Tasks are Morally Neutral
  2. Rest is a Right, Not a Reward
  3. You Deserve Kindness Regardless of Your Level of Functioning
  4. You Can’t Save the Rainforest if You’re Depressed
  5. Shame is the Enemy of Functioning
  6. Good Enough is Perfect

So basically, we need to reframe how we look at our home and these tasks first. Then, there is some practical advice on how to get your home functional. 

Another good resource is The Fly Lady. I have not personally tried out those resources but others in our support groups and have found them helpful. Find those here.

Otherwise, my best piece of advice on how to take care of your home and honestly everything else during the holidays is try to have a sense of humor about what you cannot get done. For example, this lovely laundry tree from Grown and Flown.

Infectious Illness

Let’s tackle the thing on most of our minds even more this year than usual — infectious illness. We do want these Facets Of ME to be timeless so we have not gone in depth on the pandemic specifically but the flu, colds, and everything that seems to get passed around in winter was always a concern. Good resources exist on protective measures so we are going to link out to those. We are linking to the CDC because sometimes a friend/family member wants to see info from a major organization and we are linking to others because some have lost faith in public health agencies. 

  1. Extra precautions for the immune-compromised
  2. Safer gatherings advice from the People’s CDC
  3. How to protect yourself and others from the CDC
  4. Project N95 – how to find the right mask

The thing that may have gotten trickier is attitudes about you using those protective measures or possibly asking others to do so as well. Thankfully, there is some expert advice around that as well. Take what applies and discard what does not. 

  1. Setting boundaries with loved ones
  2. Formalizing your COVID boundaries

Loneliness

Loneliness can definitely be extra hard during the holidays. We have an entire Facets of ME on loneliness. Please check it out. A few simple holiday specific ideas include joining in on online community events. #MEAction is having our Winter Artist Salon on December 14th. You can present your own art or just join in as others present. We are offering virtual movie gatherings so we can watch a movie together in our Living with ME Support Group. We will have a writer’s salon coming in January.

Traditions (gifts, wrapping, decorations)

We can love some of the extras that surround the holiday season but also find them really hard. We often have to find things to let go but it is okay to try hard to find what is most important to keep. This is a very personal, individual choice.

We really need loved ones to understand that we can let go of almost everything else and we can still be unable to participate in treasured traditions. It is not for a lack of willpower or a lack of desire to participate. The grief is immense.

I can share some things I have learned over the years but those are my personal choices. You might choose differently. We have so many wonderful suggestions from our community. So make sure you read through those at the bottom of this article. 

What we are really discussing here is what can we let go in order to try to keep what matters most. Some of my favorite traditions (I celebrate Christmas but I hope the thoughts behind my examples can be applied to your own beloved traditions) I wanted to incorporate were an advent calendar, a Christmas tree with a special ornament each year, wrapping gifts, and the above-mentioned cookie baking. I also wanted to keep the giving and kindness so I find ways that are safe enough (it is not always risk-free) physically and financially to spread some kindness. 

My thought process is what all can I let go that is not helping me keep the most special traditions? Do I really want to pull out special Christmas dishes or is my priority putting resources into a ton of outside lights? If I were not sick, then I would be all in on everything. Same for if money were no object. But that is not our reality. In reality, I let those things go so I have a better chance to enjoy my priorities. Again, we are pacing. 

Wrapping: I have always loved wrapping presents but it takes a lot of energy and movement. My compromise is wrapping the gifts for children who are in the “enjoy tearing it open” stage and gift bags for everyone else. It is an easy and reusable option for me. I do still choose one special wrapping paper/ gift bag color and use those for each immediate family member. 

Christmas Tree: Putting up my Christmas tree and revisiting special ornaments has long been a favorite. But have you noticed the amount of standing to do that or has anyone else got a rash from their artificial tree before? I still LOVE my tree but this is mainly outsourced. I am thankful to have a spouse that puts up our quick set, prelit tree each year. I do sit to help fluff the tree (sometimes). Often it is no longer a one night activity but one I do bit by bit. If you are not able to outsource to a helper, think of adding a few ornaments each day. It can be fun to build anticipation for the finished tree. Apply this to any decorating tasks.You can also go for a smaller tree, a wreath, or a small lighted decorative object if the lights are your favorite part. Some people shared they have given this up altogether. 

Outside lights: I love seeing other people’s lights and would love to have more but that is just not where I choose to use my limited energy. My compromise is projector lights. For a relatively low cost, especially with sales, a projector can shine a holiday image on my house and with a timer it is a set it and forget it item on my list. Again, doing nothing at all is entirely acceptable

Advent calendar: This is one of my easiest traditions. There are some good options to purchase and all you do is open it when you are up to it.  I have bought little felt envelope banners and written in an act of kindness to do when next able. (Hard to stick to what you will be up to that day.) But that was the most effort I put into one. One of my favorites was a Play-doh advent calendar for my child so she had a little project to do each day. And I could sit and watch her for 10 blessed moments of rest.  I also liked a book of 25 short holiday stories so one can be read each day. It is a fun way to spread the holidays out. 

Buying and gifting: Many of us are on a limited budget. We might be unable to afford to buy gifts. I would encourage you to make sure you have one special something — just for you. Even if it is something very small. There are lots of resources on finding bargains. I am not going to even attempt to go into that here. Thank goodness for online shopping. Check out our community suggestions for some great ideas on what to buy or gift! 

Acts of kindness: Here are a few suggestions. There are also many resources for random acts of kindness, nonprofits that are great to support, and ways to give back to your local community. Truly so many – providing important services, toys for children, meals for the hungry, etc. So just a quick few ideas for our community specifically: 

  1. Give to people with ME’s GoFundMe or other type fundraisers. So many are in precarious situations. 
  2. Send out a few cards to those you have met online.
  3. Leave a little treat for delivery drivers. 
  4. Support nonprofit work trying to make a difference in the lives of those with ME all year. 

What traditions are you keeping? Which are you letting go for now? We had a lot of helpful and lovely ideas shared by our community. Make sure to add your thoughts in the comments!

Travel

Traveling is frequently part of the holidays. Thankfully, we have a whole Facets of ME devoted specifically to travel! You might have to take into account a very busy travel season as well as weather issues on top of your regular travel tips for year-round.

Lived Experience Wisdom AKA Community Tips

“I do my best to delegate some of the cooking, cleaning, and decorating to others who live with me or will be dining with us. Having everyone bring a prepared dish is very helpful. I decorated a little at a time and put it all away in the same manner.

Not feeling like I have to go to every party we get invited to is important. I now reply to invites with “as long as I feel well, I’ll be there.” People who know me also know my condition and are understanding.

While at a party it’s helpful to step away into a quiet room when things get overwhelming. I find showing up later also works. I get to see everyone when I arrive but not for too long because people begin leaving. Then because I stay up late I usually get to enjoy a quieter party as things wind down.”

— Dana


“After being diagnosed with ME…”I have since become fascinated with meditation and chair or lying down yoga. It saved me when I was connected to a feeding tube and bed bound for over a year. I have started a free class/support group for those suffering with disability, illness and pain on the free meditation app Insight Timer weekly on Tuesdays at 12:30PM MST for 90 Minutes. It is growing into a beautiful, supportive group and several of us have shared that we have ME/CFS or Fibromyalgia. I also have a YouTube channel where I upload recordings of meditations etc. I would love to help more patients. It is the only reason I became certified and I am now teaching about 5 hours a week. 

My personal website and health story with pictures, and links to classes: https://www.lovingkindnessyoga.org/my-story

— Allison

 

“I have purchased some of my favorite holiday movies. I recently watched “Miracle on 34th Street.”

— Rita

 

My top tip is: Be gentle with yourself. Lean into the cozy parts of the season and let go of the busy parts. I only offer Christmas gifts to the kids in the family and my partner, and I shop (mostly online) throughout the year so that in December I can spend my energy on family time, music and church. I don’t plan more than one thing per day. I (very reluctantly) gave up on baking and on making a big feast – but the bakery makes a nice tourtière for Christmas dinner and we get a tin of fancy Belgian chocolate cookies for a treat.”

— Andrea

 

“Make a plan! If you’re alone, set something up ahead of time that makes you feel nourished or comforted. Have someone make you a favorite holiday food. Buy yourself flowers. Buy yourself a gift. Save something to watch that you’re really looking forward to. Schedule a call with someone you love. Do something nice for someone else.”

— Rebecca

 

“If you’re looking for gifts, start with what the person can really use or need. Cash is good for a lot of chronically ill people. Gift cards to online retailers. Find out if they have a wish list. See if there’s something you can get that supports a hobby or provides comfort . Give a gift of service or time – hire a house cleaner, or offer to do their laundry. I’m not a fan of all of the lists that come out every year about what to buy your chronically ill people. I think that they are so generic as to not be helpful.

Folks who’ve been sick for a long time already have a lot of the basic things that are on those lists, or they aren’t appropriate for them. Like those of us with massive heat intolerance simply don’t want fuzzy socks, warm snugly pajamas, a heating pad, or an electric blanket.”

— Rebecca

 

Here’s a blog I wrote for The Mighty a few years ago!

— Manon

 

“Things that mean a lot with my first year diagnosed with ME, is my mom making sure with my aunt I’ll have a place to lay down if I need it. So for the holidays they’ll have their basement bedroom (which has blackout curtains and a noisemaker and is very soundproof and has a comfy bed) will be ready if I need to rest before dinner or after dinner. It means a lot to me. It’s also my first holiday with them at all after ME so I’m making a PowerPoint (slowly) to best explain what is happening to me and what they should expect in the future.”

— Ken

 

“I love all the traditional foods and it’s easy to slip into old habits, but it’s important to make sure that the you have the foods you need. Outside of any dietary restrictions or allergies, I need to make sure there’s a good balance of foods so I won’t feel icky: enough protein and veggies to balance out all the traditional starches and sweets.”

— Amy

 

“I haven’t decorated the last 2 years & probably won’t again this season. I decided not to be sad about it b/c I can still do other little things, whether it’s bake a cranberry orange loaf or put together a couple of food gift bags for others. It’s the small things & being present that r the best gifts anyway.”

— Liz

 

“Start early.

We used to have a rule that anything Christmasy could only start after Thanksgiving.

The problem is there’s always so many things we want to do in that 1 month.

So we threw that rule out the window. 

Christmas tree is going up this week.

We spread out the joy and it gives me time to pace.

Also, focus on your favorites. I know I  can’t do everything anymore, so we all pick one “must do” activity that we want to do as a family. 

We try our best to make it happen.”

— Meghan

 

“Gift bags. No wrapping. Lots of naps & good nutrition.”

— J. Ruth

 

“Back when I went to large family gatherings (pre-covid), I used earbuds with brown noise playing softly in them to alleviate some of my sound sensitivity. I also arranged with the host for there to be a bedroom where I could lie down in quiet every 30 minutes or so.”

— Lia

 

“Know your limitations; be thankful for the small things.”

— Sharon

 

“I keep it very low key – very. I celebrate just by myself.”

— Janis

 

“If you’re willing / able to travel to visit loved ones, don’t go during the holiday craziness! Go in February or some other random time. You will have more quality quiet time, less stress, and less expectations.”

— Sara

 

“To be honest as a severe person that cannot be for very long with family, the best rule we made is to treat it as much as every day and to not depart from routine. It’s counter intuitive but for many of us the best tip. Body dictates, not traditions and not what everyone else may expect from you. Even though this will mean me in a room alone while others are together. It’s not what we have chosen, but this is also an act of love instead of trying and forcing it.”

— Judith

 

“For me, even as a Widow this time of year is a major strain starting on 10/31/Each Year, Even Now tel within a few days of each New Year.

Too many memories of those whom have passed away and remembering the ones with current Birthdays & Wedding Anniversaries and I can not even be with these People.Less Sunlight in my Life makes it that much harder…..

I try & keep busier outside the house….,,,,,”

— Sharon

OTHER RESOURCES:

  1. https://thespoontheory.tumblr.com/post/103845081072/holiday-spoonie-reminders
  2. https://chronicallyjenni.com/living-with-chronic-illness/supportdisabledownedbusinesses/
  3. https://batemanhornecenter.org/holiday-survival/
  4. https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Dark_Blue_Survival_Guide_Complete.pdf
  5. https://themighty.com/topic/chronic-fatigue-syndrome/managing-stress-holidays-sick-chronic-illness

*Some links will go to companies or individuals selling products. #MEAction receives zero compensation and has no relationship with these companies or individuals. We just found their information helpful. But if they want to pitch in to our efforts, email us! 🙂 

** Hyperlinks are included. Just click on the words in a different color from the others for links.

Facebook
Twitter
WhatsApp
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top