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!

—————————————–

**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…

        ————————————————-

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.

Must Haves for Tubies: A Guide to All of Your Tubie Essentials

Preparing for your first feeding tube? Or just adjusting to life with tubes? Here are some tips about some tubie essentials!

**always talk to your doctors when changing/adapting any parts of your treatment plan, my posts are strictly personal experience/personal research– I am not a medical expert, aside from my years of illness 😉

Gauze and/or Tubie pads—

Gauze and tubie pads serve the same purpose, they keep the tube site (aka the stoma) clean and dry, soaking up all excess drainage and keeping all outside gunk away! Some tubies have more drainage or granulation tissue while others hardly have any at all after the stoma heals from surgery; if you have a lot of it, continuously, gauze is often (not always) the best option. Tubie pads are much cuter and don’t require tape, making them easier on the skin. Some people use both, many people develop a preference as to which one they use, but either is a solid option for keeping your stoma clean and “happy.”

 

Great places for tubie pads (& great donors for newbie tubies!):

Homemade Tubie Happiness (on Facebook or Etsy)

Turkey Tots ((Facebook)

Dorky Little Etsy Store (Etsy)

Syringes

 You’ll use syringes every day, you have to flush during and after feeds to keep your tube from clogging and many tubies take medications through the tubes, using syringes.

You can get various sizes and types of syringes, anything from a 1-3ml syringe (not used for tubes as much as for central lines), to 10ml, 30ml, and 60ml syringes. Luer lock syringes have smaller tips that can have needles screwed into them; they work best for flushing water/feeds through and the smaller ones can push clogs through. Slip tip/luer slip syringes have longer tips that are better for medications as they allow the dissolved meds pass through easier and leave less behind.

Your home health company should provide syringes, but if they don’t have the kind you like or don’t give you enough, you can buy mass quantities for cheap prices online.

 

Qtips, clean wash clothes, natural soaps

Keeping the tube(s) clean and dry is SO important. Change the gauze multiple times a day and pay attention to the stoma—clean gently with a warm, wet qtip when changing the dressing and wash with a cloth & natural soaps during your showers/baths/etc.

Don’t leave excess blood or drainage on the skin, it can cause irritations, itching, or pain. Some drainage and blood is normal, though. It’s no reason to panic.

 

Tapes/adhesives

 There are many types of tapes and adhesive bandages, as you go along you’ll figure out which best suits you! Your infusion/home health company should provide you with tape, but if they don’t or you don’t like what they give you, there is tape in any pharmacy or any store that has a health section.

Paper tape, transpore, or medipore tape are two of the easiest on the skin, but paper tape doesn’t last as long or stick as well and it is not water proof. It may take some trial and error, but you will figure out which works best, and if you use tubie pads you won’t need as much tape!

You should get tape from your home health/infusion company, but if not you can find it online or at the pharmacy.

 

Stoma creams/ointments—

Your tube site, aka your stoma, may cause you discomfort on and off even when it has healed. There are a lot of options for ways to try and minimize discomfort. You should ask your doctor before changing any part of your treatment plan, but these are some options to talk about…

Itching? Hydrocortisone cream, Benadryl cream

Pain? Lidocaine ointment

Skin irritation, granulation tissue, or bile burn? Try granulotion, calmoseptine, sudocrem, or any other barrier cream your doctor recommend

All of these items can be found on Amazon, at a pharmacy, or from your doctor…

 

Tubie belts, button covers, and tube clips

Along with tubie pads, you can get tubie belts and button or port covers that are especially helpful for children with feeding tube. Belts and covers help keep the tubes still and in place while being used or while not being used so that kids are less likely to mess with/pull on their tubes and cause harm to their tubes or themselves

The tubie clips help keep the extra tubing from dragging or getting caught on things when you are feeding on the go. These clips work well with backpacks and/or IV poles, whatever suits you. They’re cute and simple but can save you from yanking your tube out by accidentally stepping on it or getting it caught while moving around.

All of these items can be found on Etsy, a few of the best shops to find these?

Tubie clips: Crafting for a Cure Co. (They support Newbie tubies with their sales!)

Belts: Kangarootique (Etsy)

Heating pads

Heating pads help with pain, nausea, bloating, and so much more. You can get electric heating pads or microwavable ones. They come in all shapes, sizes, and patterns and you can get them anywhere– amazon, walmart, any pharmacy, or etsy.

One of my favorite Etsy shops and one of Newbie Tubies largest donors: Divine Comfort Rice Pks

Tubie Awareness Gear:

 Be loud & proud about being a tubie; there is no shame in having a feeding tube. There are so many cute shirts, bags, and accessories that help being a tubie be a little more glamorous. Don’t be afraid to let others know about your tube, awareness and confidence are important, and you never know who else may be out there with a tube hidden under their shirt, too?

A few places to find cute tubie apparel:

Tubie Love Gear: http://feedingtubeawareness.bigcartel.com/

Newbie Tubies: instagram @ newbietubies and/or positivelyrachel.com

 

Hopefully this information was helpful! For more, check out our tips list or visit my good friend, Carolanne’s blog, here for more information on tubie products!