I found this wonderful information on The Ehlers Danlos Foundation page and wanted to offer it to all those following my blog. This is always a difficult time of year for critically ill children and adults.

Surviving the Holidays when You’re Chronically Ill

Four suggestions for making the best of the holidays
Published on November 23, 2014 by Toni Bernhard, J.D. in Turning Straw Into Gold

For the chronically ill—which includes those who suffer from chronic pain—the holidays can feel like a no-win situation. If we participate at all, there’s likely to be payback later. On the other hand, if we don’t participate, we’ll feel isolated and risk other people not understanding why we haven’t joined in the festivities.

I encounter this no-win dilemma at Thanksgiving, which is the only winter holiday that my husband and I celebrate with other people. We host a Thanksgiving dinner. (I use “we” loosely here; my husband does most of the work.) My son and his family come; my husband’s brother and sister-in-law come; a few friends come. Here’s my no-win dilemma: On the one hand, I want to be part of the festivities from beginning to end, but if I do that, I’ll land in bed for days. On the other hand, if I stay in the bedroom most of the time, I hit the emotional skids. My solution? I compromise, even though that compromise results in several days of payback.

Here are four suggestions for surviving the holiday season—from Thanksgiving to New Year’s.
Come up with a plan of action before everyone arrives or before you go to other people’s houses.
Doing this will allow you to keep the chronically ill person’s best friend by your side: pacing.
I figured out that our Thanksgiving gathering is divided into four periods:
• a burst of socializing when people first arrive;
• more socializing, accompanied by snacking, in the hours leading up to dinner;
• dinner itself; and
• after-dinner socializing

I’ve got my plan of action, although, I admit, it’s a challenge every year for me to garner the discipline to follow it: I limit myself to visiting for two of these four periods. I’m present when people first arrive, then I retire to my bedroom and lie down until dinner is served. I eat dinner with everyone. Then I retire to my bedroom again after dinner.

Is this a satisfying arrangement for me? Not really. But it’s my compromise…the most amount of socializing I can handle that results in the least amount of payback in the days to come.

Your ability to participate may differ from mine. I suggest you figure out ahead of time what’s best for you, given your limitations. It will be much easier to muster the discipline to leave the gathering if you have a plan in place. (Hopefully, if you’re at another person’s house, they’ll have a room you can lie down in.)
It can also be helpful to tell someone who’ll be there—someone you feel comfortable with—about your plan of action so he or she can prompt you: “Why don’t you rest before dinner?” But a warning: the burden may still fall on you to carry out your plan because your “helper” may get caught up in socializing or helping with meal preparations and forget to give you that prompt. I’ve had that happen. Bottom line: I know that pacing is my responsibility.

Lower your standards regarding holiday gifts and cooking.
Doing this has been very helpful to me. I now do all my shopping online. I miss the ambience of being at a mall with its decorations, holiday music, and wide-eyed kids lined up to see Santa. On the other hand, I don’t miss the crowds. On balance, I’m happy to shop online.

Recently, I’ve lowered my standards even more and have started buying gift cards. At first, I felt bad about it—that is, until a friend gave me a gift card to Amazon. I loved it! Yes, it was not as personal as getting a wrapped gift, but then again, I was saved the experience of opening a box and gazing upon something I knew I’d never use. I bought a new quilt for my bed with the gift card, something I’d never have spent my own money on. After choosing the exact one I wanted, I sent the Amazon link to my friend. She loved seeing that I’d gotten for myself something I really wanted.

As for cooking, I’ve learned that I can cut corners and no one notices. The last two years, my contribution to Thanksgiving Dinner has been to make a pumpkin pie. I’ve always taken pride in my pie crusts, but I no longer have the energy to make one from scratch, so I had my husband buy a pre-made one. The first time he did this, I felt terrible about it. But when everyone ate the pie, no one noticed. I got compliments all around. Yes, I noticed…but I was the only one…and so I decided it was time to let go of my “have-to-make-pie-crust-from-scratch” directive.

And here’s your bonus for lowering your standards regarding gifts and cooking: It’s highly likely that no one was holding you to as high a standard as you were holding yourself to in the first place! I’ve discovered that this is true in general in my life when it comes to those who care the most about me. And so, when I lower my standards, they’re still usually higher than what my loved ones are expecting of me anyway.

Look for the joy in the holiday you’re capable of celebrating.

I can’t spend Christmas with my children and their families because I can’t travel to where they are. So where’s the joy? I’ll admit that sometimes I have to look hard for it and, yes, the holidays can be  a mixed bag for me…not all joy. But if I look, I can find it. My first joy is a perverse one, but what the heck! When I see news stories about the nightmare holiday travel people have to endure—getting stuck on snowy roads, sleeping in airports because of cancelled flights—I say to myself: “I’m glad I’ll be at home.”

My second source of joy is the peaceful quietness of my husband’s and my Christmas Day. This makes Christmas feel old-fashioned and in harmony with the spiritual nature of the day. Yes, it can be tinged with a feeling of emptiness now and then, having raised two children in this house. But the quiet is nice.

Sometimes we try to find an espresso place that’s open so we can chat and people-watch. I’ve noticed an unspoken camaraderie among those who, like the two of us, aren’t with family on Christmas Day. That sense of kinship brings me joy.

Keep mindfulness, self-compassion, and equanimity as your faithful companions.

Why mindfulness? Because mindfulness is caring attention to what’s going on in the present moment. That includes what’s going on in your body and your mind. The more you stay attuned to how you’re feeling physically and the more you know how your mind responds to what’s happening, the better able you’ll be to take care of yourself.

For example, if you’re at a gathering, mindfulness can help you become aware that your body is too tired to continue socializing. It’s important then to become aware of what your mind does when your body sends this message. Does your mind try to talk you out of listening to your body? Does it try to guilt trip you into socializing longer than you can handle? The more you know about how your mind reacts, the better you’ll be able to choose to take self-protective action.

Why self-compassion? Why not self-compassion? It’s not easy to have to limit yourself so severely during the holidays and not to be able to do what you want to do the most. My first choice would be to go to my daughter’s house in Los Angeles for Christmas morning and then drive to San Diego and spend Christmas afternoon and dinner at my son’s in-laws’ house. But I’m not able to do it. This doesn’t call for self-blame; it calls for self-compassion—an essential survival tool for the chronically ill.

Why equanimity? Equanimity is that calm and balanced state of mind that is always aware that life has its share of ups and downs, and successes and disappointments. Life is a constant mix getting what we want and not getting what we want. When I’m able to accept with grace that I simply cannot celebrate the holidays the way I would if wishes always came true, I can begin to let go of any resentment I feel about the life I have—and that feels good. That letting go also makes me feel a special connection to others who are in the same situation. That connection—that kinship—goes a long way to helping me feel at peace during the holidays.

Peace on earth and goodwill toward all of you.

© 2014 Toni Bernhard


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