How to balance Christmas parties & life an invisible disability like Charcot Marie Tooth, MS, Cerebral Palsy, & neuropathy.
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The Holiday Season isn’t all jingle bells and sleigh rides when you have an invisible disability. As temps begin falling and your calendar starts filling, the stress and worry about how the hell you’ll make it through it all, rears it’s Scrooge like head. Of course this time of year can be stressful for everyone. There is a ton of pressure to be merry and create picture perfect, Norman Rockwell like moments, to then post on Facebook of course.

There are gifts to buy without going broke, relatives to please without creating drama, and parties to attend without gaining weight. Basically, there’s a whole crap load of stuff to balance during the holidays, whether you have a disability or not. Add to this, various physical and emotional stressors like chronic pain, foot drop, neuropathy, and extreme sensitivity to the cold, and the challenge of finding balance during the holidays becomes both a literal and figurative one.

Of course, You can stay home from now until after New Years and avoid all uncomfortable and potentially dangerous situations. There would be no risk of slipping on a neighbor’s driveway, or spilling eggnog on the hostess and her winter white cashmere sweater, if you rsvp “no” to everything right? But, that would be really boring and depressing, don’t ya think?

If you’re with me, here are some tips I use for balancing the challenging parts of having an invisible disability during the holiday season.  Please note that this post is directed at people with physical challenges and chronic conditions who are physically able to leave their homes. It is not directed at those individuals with chronic illnesses who are sick and unable to leave their homes.

 BALANCING EXPECTATIONS

You do not need to be a Pinterest queen to make the holidays special and memorable for your loved ones. There are no extra mom points for turning one’s house into a winter wonderland or for spending hours creatively gift wrapping. The truth is, while some people do appreciate the little details, most don’t notice or care. It’s really about you and deciding on which parts of the holiday rigmarole bring you more joy than they do stress.

Let’s use the whole real vs artificial Christmas tree decision as an example. If you love having a real Christmas tree, then by all means, get a real tree. However, if picking up fallen needles and other aspects of having a live tree in your home takes a toll on your body and stress level, then get an artificial tree and call it a day. If mobility issues make shopping in malls and stores difficult, then embrace the convenience of online shopping. If you don’t truly love cooking, then make reservations or cater in. Believe me, your loved ones would much rather have you at the holiday table present and relaxed, then in the kitchen all stressed out about an overcooked brisket. You have choices.

 BALANCING YOUR CHECKBOOK

I’m a total over-spender during the holidays. I used to buy my kids almost everything on their list. Ugh, I know. Bad! It’s mostly because they are such great and appreciative kids, and partly due to Jewish guilt. You see during Chanukah, which really isn’t an important holiday in the Jewish religion, many parents (like myself) try to compensate for not having a Santa or Christmas, by giving each kid 8 gifts for each night of Chanukah. While this tradition worked  well when my kids were little, not so much now that their lists include things like an iPhone X and $200 basketball sneakers.

So, If you’re thinking, what does this even have to do with disabilities? It doesn’t, well directly anyhow. But, similar to Jewish guilt, some parents with disabilities may overspend on their loved one’s gifts in an attempt to compensate for not being able to physically do everything during the year. Obviously, this is not good, especially for your bank account.

I started a new tradition in my family that helps all of us balance our family’s holiday wants and needs with those who don’t get to choose. When making their lists, each kid is given a budget and told to include items for someone their age less fortunate than themselves. We then shop for their picks together (online and in stores) and deliver them to a local charity.

 BALANCING OUTSIDE & GETTING FROM HERE TO THERE

It is soooooo cold here in Michigan and winter hasn’t even officially started. In other posts, I’ve talked (and complained) about how to enjoy summer with an invisible disability and wearing  afos. But winter, and the ice, snow, and awful freezing rain it brings with it, is a whole different beast.

If your winter weather is similar to mine here in Michigan, a good pair of warm, non-slip, and waterproof boots is an essential. If you wear afos or orthotics, check out my post on how to find fashionable wide width-boots to fit your orthotics or afos. If you have boots already, but find them to be slippery, you can always add anti slip pads or spray a non skid coating to the bottoms. This year, I was excited to find a pair of snow boots with removable insoles and a foldable ice gripper on the soles.  Not only are these great for preventing falls outside, they can also be worn indoors without scraping up anyone’s floors. Genius right?

It’s smart to be proactive and to talk with the host or venue ahead of time about your disability and needs. Ask questions like, what is the parking situation? Are there stairs to get inside or to the bathroom? Will guests be expected to remove their shoes? I know it isn’t easy, but having a conversation beforehand will help others to plan for the accommodations they can provide and it will alleviate some of your pre-party anxiety.

 BALANCING AT EVENTS

I am a social butterfly trapped in the body of an unstable and uncoordinated caterpillar.

The ability to Navigate a party or event with an invisible disability (or multiple ones) is an art, not a science. In fact, I wrote an entire post on how to balance at a cocktail party when you have a disability. Here are a few of the key tips:

  • Upon arrival, do a quick scan of the room or house and assess it for potential fall hazards like slippery flooring, loose rugs, and extra long tablecloths on the ground.
  • Avoid having extra things to carry and wear a small crossbody wallet to store your phone, license and a lipgloss.
  • Try to position yourself against a counter or wall preferably near the booze. Definitely don’t plant yourself in a busy corner where people wiz by.
  • Eat a bowl of cereal or something ahead of time so that you’re not starving and don’t have to balance an appetizer plate along with a drink.

 BALANCING CALORIES

I used to be able to gain a couple pounds during the holidays and have it off by mid January. Now, at age 48, it isn’t so easy. A week of binging on spinach dip and crackers can take months to get rid of. If you read my blog on having a positive body image when you have a disability, then you already know about my issues with weight and self-esteem. When I stay in my “happy weight” range, I feel better, move around easier, and am generally nicer to be around.

I stay mindful by writing everything I eat down using a free diet tracking app called My Fitness Pal which I listed in my life changing apps for people with disabilities post.  For me, it’s all about planning and balance. If I know that I’m going out at night, I try to be careful about what I eat during that day. Of course, I also try to do the basics like, reducing carbs, drinking water, and exercising. I like to have a drink or two (sometimes 3) at parties and pick low calorie combos like vodka and club soda. When I get the, Lainie, you’ve reached your limit look from my hubby, I switch to the “fake-tini” (club soda with lime) so that I can feel festive but avoid looking even drunker than I look normally without even a sip of alcohol.

While it’s good to be mindful of what you’re eating, the whole point of a party is to relax and enjoy yourself. I try not to talk about what I can or can’t have, as this is super annoying to others. I take small bites of everything I want to and that I can manage to hold and eat without  dropping.

 BALANCING SELF CARE

Doing the holidays differently this year is ok. Saying no is ok. Plugging in a light projector instead of setting up your Christmas display is ok. Using dollar store gift bags instead of wrapping paper is ok.  Not going to Midnight Mass when your exhausted at 8PM is ok. Saying screw it, and booking a last minute trip to Turks & Caicos is ok.

When we remove all of the shoulds and put our needs first, the holiday season tightrope widens and becomes easier to balance and cross.


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16 Comments

  1. Lainie,
    This so timely! I attended the first party of the holiday season on Saturday and guests were encouraged to bring in supplies for a women & children shelter. Fortunately the party has a started and end time so we didn’t stay out too late. Sunday I decorated for the house for Christmas. Last year I purchased a faux tree. Best money I’ve spent. I do have to say that I am tired today and thought of calling out but it’s the end of the semester and I need to be around for the students. I’ll make it an early night this evening!

    • Hi Cyndi,

      You’re so great! It sounds like you do the most important thing of all which is checking in with your body and making smart choices. As always, I appreciate you reading & commenting 💜

  2. You really Hit the nail on the head! I M having. Wrapping party Thursday with two of friends children. Gifts are bought, that is fun. And they’ll help me put them in bags and tags. It stresses me out. And Christmas is a pot luck since no one wants to step up to cooking.thank yo fir all you encouragement!! Love you!

    • Hi Bonnie, What a smart idea! I love the wrapping party and the fact that you can enjoy your supportive friends at the same time. Brilliant. Potluck is how we roll always 😀👍. Love you back. 💜

  3. Awesome reminder – I was just starting to regret accepting a holiday party invitation, and that sentence you wrote about staying home vs. Going out confirmed that I had made a great decision to go!

  4. Great tips, especially being more practical and thinking ahead a little with things like parties. I think the last part about self-care is so important and it’s often neglected because people are too busy making sure others are okay rather than themselves and feel obligated to do things when saying no, taking a break, doing what you need to make sure your needs are met are all okay. Fab post! =]

  5. Lainie, such a good article – you could have written it for me as I am the world’s worst at self care during this busy time. Then I collapse at Christmas (glass of something nice in hand though) and don’t enjoy it as much as I should! I have shared this on my reg PainPalsBlog feature Monday Magic – Inspiring Blogs for You! Claire x

    • 😂😂 Glass in hand always . Thanks Claire for reading & commenting. Also, I appreciate you sharing on your fab blog. Merry Christmas & take care of you this year!!! ❌⭕️

  6. Such a great article, my friend…you out do yourself every time. All tips we can use and truths we need to be reminded of. xoxo

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