Spoonie Survival Guide: Happy Holidays!

Happy Holidays!

 If you’re anything like me, it doesn’t feel quite as festive as it normally would at this time in December – there’s just not as much of that fabulous, positive, contagious Christmas cheer! Most of us are still looking to avoid contagion, but that forces us to drop holiday gatherings, our long time traditions, & even just shopping/present prep!

That said, even pre-COVID19 so many people face challenges during the holiday season. So many deal with loss, with family struggles, with personal struggles. Whether it is due to health, both physical and mental illness, relationship troubles (family, friends, ex- es, etc), poverty, loss, or any of a long list of possible difficulties and struggles one can face, this is one of those few times we can all relate so closely to one another.

I’ve been working on a “holiday survival list” for chronic illness patients, but spoonies /tubies/ sick people and their families are definitely NOT alone when it comes to holiday and this list should work for anyone, sick or not.

Here are things I’ve learned over the years about making the most of the holiday season, no matter what your situation may be!

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**Do YOU.  ** You are in charge of you. Only you know what you are feeling and what your body needs, but heads up, the holiday season offers lots of tempting opportunities to push one past their energy/illness safety limit – aka, have too much fun for too long with far too little sleep!

Listen to your body and mind, go into things knowing you are going to make the most of every minute, but that once you hit your limit, you are allowed, even encouraged, to take time for yourself. Participating in moderation and resting when your body needs it will help you be up for way more than if you over do it on one activity or gathering. I speak from (much) experience.

The spirit of Christmas is so important for me, I love love love to give. I love to see others receive, always have. If you know of something your loved ones truly cherish about the holidays, a traditions, a favorite meal or type of Christmas cookie, or a gift they are begging Santa for, this is where you use your spoons, even if you think it’s a crazy idea or you may totally wear yourself out, give it a shot.

Regardless of the outcome, you showed interest and care and even bigger than that, you have given them the ultimate gift many of us spoonies have to offer, you chose to share your precious, limited time and energy with them. Not just buying something for them, but putting effort into something you know they care about and then using up all of your spoons doing so.

**Expectations. Lose them. **

Planning ahead is a terribly difficult thing to do for those with chronic illnesses like EDS because you cannot predict the severity of your symptoms ahead of time, but I assure you, holidays will wear you out! 

If you start the holiday out with the attitude of “I’m going to try to do as much as I can, but it is okay if I need to rest,” you’re going to have a better day than if you went in thinking…

”I have to do it all, I have to keep up with everyone else, I can’t let anyone else down…” 

Your family or friends will just be so happy to have you able to take part in what you can. Resting here and there will allow you to do more in the big picture, so don’t fear down time or quiet time – the holiday chaos will be there when you wake up!

Feel NO GUILT for what you can’t or don’t feel up to doing.

This is an important one, too. If you need a break to lay down, to take medications, to have some time to recharge, THAT IS MORE THAN OKAY. That is more than okay even if you are not sick at all. If you’re at a family gathering and don’t want to sit at the table while everyone eats and you are just plugging away at your feeds, it’s more than acceptable to excuse yourself and rejoin the group later on.

Sometimes people, even our own families, say things that make us feel judged, patronized, or a little guilty about how we handle ourselves, decisions we make, or how much/how little we participate in family happenings, but that isn’t just something spoonies experience, it can happen to anyone.

Remember, only you feel what you you are feeling. No one else can. Only you know what you need, all you can do is tell your loved ones what it is, let them know if there’s anything they can do for you (usually not) and then just send them on their way and get some rest. Never take any of it personally, they simply can’t understand because only you feel you. No one else can feel what you are experiencing, especially healthy people!

**CHANGE is hard. **
Especially when it’s holiday traditions. But change happens!

Healthy or sick, we should be paying attention to what is important to one another and trying to keep those traditions going while also accepting that some things are going to change, and that is totally okay, too. If there’s a tradition (or activity) that you want to be involved in but may need to tweek just a bit to make it doable for you, you have to let people know! 

It can also be pretty special to be able to start new traditions, even if we can’t do everything. If you put your mind and your heart into the holiday, you can have a good one. I guarantee it.

**Acceptance.**

Accept your situation and be open to that of others. Another big one.

This one hits home for me this year. Some family members, my own health and the path I am on because of it. It can be so hard to face reality when your reality, present and future, can sometimes appear so bleak & brutal, but it’s so important to hold onto every ounce of positive energy and a positive mindset you can, to learn to balance your reality and acceptance with hope for a better tomorrow…

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One thing we spoonies are experts on is taking a new situation and adapting, making it work in the best possible way for us, for our loved ones, for whatever it is we need.

Accepting where you are today or even accepting that you will likely always be sick to some degree does not mean you stop hoping for improvement, for more good days than bad, for the ability to live a life worth living. One of the most important pieces of advice I offer?

Don’t give up on life. Accept. Adapt. Thrive. Know you aren’t alone.

Into the COVID Holidays We Go

For as long as I can remember my mom, my aunt, my grandma and I have gone to craft shows together during November and December and done a huge amount of Christmas shopping. I love this tradition because of the time spent with my mom and the other women of the family but also because we support so many small business owners, we find fantastic, handmade gifts that our loved ones won’t be expecting and we support individuals who put such time and creativity and passion into every piece they are selling. 

We’ve entered what is obviously going to be a very unique, unprecedented holiday season. I think there is some nervous energy and anticipation because of all of the unknowns, but the holiday spirit will nonetheless take over as holiday music and movies flood our car radios and TV guides and suddenly pillsbury cookies with turkeys and christmas trees are next to the pumpkin pies in the featured aisles in the grocery store.

Since we’ve entered flu season the risk for COVID19 has obviously increased as well and we are all faced with questions like how do we celebrate the holidays this year? Is it safe for our extended family to gather? Or even to travel and get here in the first place? Are the school aged kids safe to be around the grandparents? How do you social distance or keep masks on when you’re gathering for Thanksgiving supper or Christmas morning gifts? 

What about black friday? Christmas shopping? Christmas church services? Baking day? All of your traditions that involve people, food, hugs and kisses…

Sadly, COVID19 will be playing part in our holiday happenings this year, but that doesn’t mean we won’t have opportunities to make it a beautiful, meaningful holiday season. It will be one of a kind, new territory for all – we know at least that much! 

Here’s the thing… for some of us, these aren’t new holiday complications. The COVID life isn’t so different from that of a chronic illness warrior who is sick to the extent of being homebound or even bedbound. We have always had to wear masks during flu season and avoid anyone who has been sick, even if that means skipping family gatherings or school/work. It can become an isolating time, you don’t get many visitors, it’s often just you and your caretakers, your family members, and your outings get as exciting as taking a drive on the back roads with your camera, capturing the sunset or if you’re really lucky, the bald eagle. 

So you can see how this time in quarantine has just amplified that spoonie lifestyle, and heightened the isolation, as even going to the doctors office is risky,   going to 7-11 to get a drink on the way home, running to the dollar store to get items for packages, heck, even mailing the packages is on the no list for me now. (Wear your masks, please. )

Thanksgiving can be a tough holiday to feel really involved in, really comfortable going to as a gastroparesis warrior/tubie. It is all food, the air filled with the smells of meat and pie, and there are so many loud kitchen sounds and multiple conversations going at once, lots of beautiful laughter, and oh so many forks tapping on the fine china around the table. When you are sitting at the table but are not partaking in the meal it’s hard not to become hypersensitive to all of the little noises and to be overwhelmed keep up with the conversation when you really just want to burst. Or eat. Or go in another room and just be. 

It can be difficult to adjust to being in a setting like that. For me it’s not about people eating in front of me, it’s more that it’s a holiday tradition that is suddenly stolen from you, it’s a bit different than a normal family meal or hanging out with your friends while they have a snack or whatever. This is something the whole family is doing, it’s more than a meal, it’s a celebration and a tradition, memories made, memories being talked about, but when you feel so sick and you can’t sit there any longer without getting sick, you learn to seperate yourself. 

Thanksgiving is a time to spread awareness, to encourage others to be thankful for something that everyone does all the time, so many times a day in so many settings without a thought, that has been taken from so many of us – the ability to enjoy food. The ability to be independent, to work and go to school, to live on our own…on thanksgiving, though, mostly focus on the eating :). I always encourage my readers to mention this to their family and friends on thanksgiving or any other time it pops into their minds, even just having froyo with friends or at lunch at school, whenever and wherever, take advantage of it and remind people that even the most natural parts of life can be taken out of nowhere. 

COVID19 is (hopefully) something we won’t have to alter our lives for forever. They are working hard to find a vaccine, to find an answer to get us back to real life and out of global crisis. Thank god. But for those of us with chronic conditions, we will continue having to alter holiday traditions, continue feeling out of place at times, continue wearing masks during flu season; our lives were complicated in these ways before COVID and they will be this way post COVID, but this year you have gotten a taste of our situation, and that’s something. 

Honor our struggle by not taking these limitations for granted when your COVID experience comes to a close.