Surviving the Holidays with IBM
The holidays can be wonderful and exhausting, and living with inclusion body myositis (IBM) adds a layer of planning. Here’s what I’ve learned about enjoying the people I love without wearing myself out. I wrote part of this two years ago and I still believe every word.
Drop the “I’m too much trouble” thought
Baloney! Friends and relatives may hesitate to encourage you because they don’t want to wear you out, but they would love to have you there. Communicate your needs early, and be ready with a few requests that make things easier for everyone.
Make it easier on yourself
Gifts: Don’t spend money you don’t have or need elsewhere. Once the kids are grown, a giftless Christmas or a one-gift swap can be a relief.
Lodging: If the event is out of town, ask the hosts about an accommodating hotel, then call the hotel yourself. Many don’t understand the realities of using a wheelchair, and some still have step-in tubs. Always call ahead!
Potlucks: Tell the host you won’t be bringing anything. They want to see you, not your potatoes au gratin.
Pacing: Alternate activity with rest, and keep your routines. Travel and crowds tire everyone, and a disease adds to that. Go easy on alcohol, which dehydrates you on top of the stress.
Short visits: Staying for a little while still counts.
Handling the people part
Holidays put us around people we share a lot of history with, good and bad. Go in with realistic expectations. You won’t like everyone’s behavior or words, so let them slide off you. If someone raises a divisive topic, change the subject, or say clearly that you don’t plan to discuss it. Letting someone win an argument doesn’t mean you agree with them. You take home the hugs and the love and can let the rest go. We can choose what to focus on.
You get to say no, and you get to say yes
You don’t have to attend events that will cause undue stress, and you can gracefully bow out of things that don’t lift you up. If guilt tends to win, go but don’t stay long. On the other hand, don’t assume it will all be too much and miss the people you care about. Connection matters, so surround yourself with people who build you up.
Use your toolbox
Remember the tools you use every day: gratitude, tolerance, a breather when you need one, and some alone time or time with friends. You’ve been building your toolbox for managing IBM for a while now. Grab those tools and put them to work.
“All we have to decide is what to do with the time that is given us.”
— J. R. R. Tolkien
We have a bookshop store HERE where you can find books Linda has read, or that look helpful for folks dealing with chronic diseases of various kinds.
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
