Thriving During the Holidays with a Rare Disease or Chronic Illness

The Holidays can be such a wonderful, exuberating time with tons of celebrating, great food, and never-ending time spent with family and loved ones.  When you have a rare disease or chronic illness, it can be easy to push your needs to the side to fully participate in the festivities.  As you already know all too well, forgoing your boundaries can lead to a flare-up, burnout, exhaustion, or even illness (like normal people sickness, on top of your not-so-normal health).


Here are a few tips to enjoy the Holidays, while keeping your needs in mind.


Note: Everyone is different and has different needs.  These tips may not be for you, or may need adjustments. You know your body best, so be sure to always do what’s right for you.



  1. Leave parties early

This tip was 100% inspired by @invisiblysicklala!  Tell the host you need to leave at a certain time, so there’s no awkwardness when the time comes. If leaving early isn’t possible, (because you drove with someone else, etc.), go into a quiet room, bring noise-canceling headphones, and put on your favorite music.  If your condition calls for things like a heating pad, or specific meds, bring those too! Bonus points if you can find a bed to nap on.  If it’s helpful, make a plan with the host ahead of time.  Let them know the time you’ll need to retreat and rest, so you don’t feel rude.

2. Keep a full water bottle with you at all times

I’d argue that this is a good habit to have 24/7, but this time of year is especially important.  With delightful smorgasbords of cookies, cheese boards, champagne, and other holiday goodness, a constant reminder to drink water and stay hydrated is important.  I constantly have my Simple Modern tumbler filled with ice water within arm’s reach.

3. Prioritize comfort over irritating fashion

Example: When I think of Holiday fashion, sequins always come to mind.  Unfortunately, oftentimes, sequins are synonymous with scratchy.  There are countless other examples. You may live with chronic pain or have sensitivity to certain fabrics. I’ve learned I’m much happier when my outfit is breathable and comfortable.  Don’t get me wrong, this time of year is my absolute favorite time to dress up and I still love picking out outfits; I’ve just shifted my mindset when I shop.  In addition to fitting my style, my clothes need to feel easy and agreeable.  The last thing I need to be doing is constantly adjusting a too-short skirt or trying to ignore the ever-present itchiness of a sparkly sweater. This season, I’m really into silky pants, like these. Chic, and yet they feel like pajamas.

4. Get your shopping and wrapping done early

We all know the feeling of being stressed with Holiday shopping.  The stress comes in full force when you wait until the last minute.  There is no need to put your body under even more stress by worrying about ludicrous traffic or delayed deliveries.  Not to sound too capitalistic, but remember Amazon is your friend. When it comes to your health, you gotta do what you gotta do. Rare disease or chronic illness t-shirts are a simple way to gift a loved one something unique and special.  Here, you can find items for moms with kids with a rare disease!

If you’re concerned about shipping delays or simply want a better price point Kelly&FA is on Amazon! (*note: The quality is adequate, although everything on Kellyandfa.com is better.*)

5. Plan time to rest

This time of year, your schedule can fill up with lightning speed.  Make sure you write everything down and fit in time to stay in and relax with your dog and a festive movie.  Time for self-care is as important as ever.

Are these tips helpful for you? Would you add anything to this list?

x,

Kelly

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Last-minute Amazon gifts for Loved Ones with a Rare Disease

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Tips for Living Alone with a Rare Disease or Chronic Illness