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.

Strength for All; A NTCP Shirt Fundraiser

In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain.

It was during that time that I began thinking about how lucky I was to have my 24/7 support team who were there for me always, no matter what, no complaining, and I just couldn’t bear the thought of anyone going through this alone, so I decided to be there for every tubie I could. Chronic illnesses are one of those “find out who your real friends are” situations and it can be brutal and shocking seeing who it is who puts the effort in, my goal is to step up and be that person when I can, but also to encourage others to do the same; so two years and lots of work later, over 300 packages have been sent out to first time tubies. 

To celebrate this milestone we’ve started a shirt fundraiser to raise money to contribute to Newbie Tubie Care Packages! 

Living with chronic illnesses or other conditions that cause one to be unable to eat enough to sustain themselves on their own and cause the need for a feeding tube is incredibly challenging, and that’s a massive understatement. Imagine life without your favorite foods , without the ability to go out for ice cream or coffee or a drink with friends, not sitting around the table and eating thanksgiving with your loved ones, having to come up with options not involving food for social gatherings or first dates, and explaining to people why you aren’t eating or what that little knobby thing on your tummy is.

Feeding tubes require incredible strength and self awareness, they are life changing, but they are nothing to be ashamed of, they are a gift that gives life back to more people than you would ever imagine – young and old, boys and girls, and due to so many different causes or conditions, feeding tubes are so much more than just a life sustaining piece of plastic, so join us in spreading awareness and celebrating year 2 of Newbie Tubies as well as the gift that so many of us are given through feeding tubes – the gift of nutrition, energy, and a life we may not have had without them.

Whether you’re a tubie or not, purchasing a shirt shows your support and love for tubies and contributes to our care package program that sends packages (free of cost) to first time tubies. No matter where your strength comes from, these shirts represent that strength.

We run on donations and these shirts are super cute, so it’s a win-win! You do not have to be a tubie to be Tubie Strong!  Purchase a shirt for yourself and wear it proudly, no shame, just strength and power in your self and appreciation for the gifts we often take for granted.

Thank you so much <3

*Link below! Currently open until Nov. 21st.*

**SHOP HERE!**

you can also donate to PayPal @ rajinone@aol.com or check out or wishlists on Amazon or Etsy!

Love & Gratitude,

Positively Rachel

Newbie Tubies turns Two!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!

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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com