Chronic Illness Tips for the Hard Days

 

Sometimes physically difficult days can also lead to mentally and emotionally challenging days, and if you’re alone or unable to distract yourself, these days of discouragement can turn into weeks of depression, so I want to share some tips on what to do on the difficult days — this applies to spoonies, tubies, mental health patients, and really anyone in general– everyone has bad days!

  1. Get up and change your clothes – This is one I’m often guilty of during my homebound/bedbound times, so I know it can be one of the small hassles we often put off when we are having a bad day or an unmotivated day due to pain, nausea, fatigue, whatever it is for you that day. That said, sometimes just putting on a new pair of PJs, a super comfortable t-shirt dress, or sweatpants, whatever it is that you’re comfortable in, can make you feel a bit fresher and lighter, ready to take on the rest of the day (in bed) 😉
  2. Self care – simple at home or out and about, face masks, nails, Epsom foot soaks, whatever your favorite thing is—
    1. showers optional if you don’t have the energy – one day doesn’t kill ya. (neither does 2 days….3 days? 😉 ) I’m no shower person w/ POTS and GP, but the body adjusts amazingly when your body is adapting to changes like these. Buy some great shampoo and then dry shampoo & leave-in products and you can easily get away with washing your hair once or twice a week. It takes a bit of time, but your hair starts adjusting and working to stay clean longer.
    2. Some people love doing their makeup, even if it’s just for themselves at home! If it makes you feel good about yourself or makes you feel more like yourself, do it! Lay in bed with that red lip stain, work it girl.
  3. Even taking a walk or doing some stretching can refuel both mentally and physically – laying in bed all day/all winter can cause more pain…. Easier said than done, but finding your favorite way to get up and moving — walking, dancing, yoga, biking, etc. — can be great for you in so many ways.
  4. Call up a friend—just have a movie night or go get your nails done, doesn’t have to be crazy night out, just some fun, time to enjoy yourself and for a moment, maybe, forget how crappy you feel.
  5. Dogs are top notch medication/therapy and the most reliable members of our support systems 😉 Find a dog, get a dog, rescue a dog, steal a dog, borrow one… they’re everywhere, and they need love as much as you do!
  6. Listen to music or get out your favorite coloring book or paints and use that creative brain in there! Sometimes all you need is a little bit of a distraction, a different focus for your brain, even if it’s just for 15-20 minutes!
  7. Take a drive. Cant walk? Take a drive with your family/friends/caretaker and just get some fresh air, get out of your house for a little while. See the outside world.
  8. Do YOU. What makes you happy? When do you feel your best physically and/or emotionally? Whatever that is, do it. Drop what you’re doing, take any meds you need to / can so you are comfortable (ish) and follow your spirit, your heart—your body may hate it, but sometimes an outing or a self care distraction can do you wonders.

 

Follow your heart, listen to mind and body, and don’t be afraid to express your emotions. If you can, talk to your parents, siblings, significant other, or friends/loved ones. You can also find so much support through online support networks, one huge gift that technology has shared with us; friendships with others with your conditions can be incredible, its a feeling of life long friendship with someone you’ve spoken to online for a few months and then in the years to come, through your worst flare ups and your toughest, lowest times you are being supported by someone you’ve never met in person, but someone who becomes the person.

Find your happy. Find your happy in activity, find it in hobbies and in friends or animals, in art or cooking, in working or advocating, but most importantly, find your own happiness that comes from within your own self. Love yourself, care for yourself, and don’t doubt your strength. When you need to be reminded of your worth or your strength or your beauty (inside and out), remember this, remember that you are your harshest critic, but you are strong enough to push through anything if you are strong enough to live with chronic illnesses. There’s nothing harder than this, so stay confident and have faith in yourself, care for yourself in any way you need/want to, and remember that YOU and your health, mental and physical, come first. You are worth it, worth so much more than any words I can put together, so I think I’ll call it here:)

 

 

How and What to Donate!

 

I have created a list of some of the possible donations we could use, however there are endless options and each package is different depending on age, gender, and interests of each person!

 

Right now (Jan 17) I have an 18 year old male, a 31 year old mom with two kids under age 4, and three girls between ages 16-19 who like either blue or pink, horses or dogs, and glitter or bows.

There’s lots of differentiation, but they appreciate anything I can send them that is comfortable, tube related, age-appropriate, or simple things that relate to their interests.

 

Newbie Tubie Packages

Donations needed–

Care package items:
(Get on amazon, dollar store, Walmart/target,etc)

-Bath bombs, bath salts, natural soaps
-Self care/pampering goodies (face masks, nice body wash or lotion, dry shampoo, etc.)
-Cute hair ties, clips, headbands
-Mini lotions, germ x

-Soft blankets, socks, stuffed animals
-Coloring book/pens/colored pencils
-Small toys and goodies for kids

-Makeup sized bags (fit in purse/backpack)
-Inspirational quote books/journals
-Goal books, guided journals

Medical/health related:
(Walmart, drugstore, amazon)

-Heating pads (rice/microwave), heating stuffed animals
-pill crusher, pill splitter

Tube supplies:
(Found on Etsy, online)

-Tube clips (for long tubes)
-Cute medical masks
-Heating pads
-Tube belts
-Tubie pads

-For home made tubie friends–Unused button tubes, extensions, long tubes
-Stuffed animals

Anything else that will fit in a care package or help make a tubie feel more comfortable post-surgery/during their transition to tube feeding!

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I also accept re-gifting! If Christmas brought too many fuzzy socks and coloring books or one too many scented candle and bottle of the same old lotion, I’m happy to take anything off of your hands that you just wont use!

Spring cleaning brings about lots of unwanted (and unused) items? Donating to my project is just at meaningful as donating elsewhere! Keep it in mind for your extra, package sized goodies.

 

You also always have the option of purchasing a painting! All profits go towards shipping and shopping costs for newbie tubies!

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If you are interested in making a monetary donation, my pay pal account is: rajinone@aol.com

You can contact me at positivelyrachel101@gmail.com  if you have any questions, want to mail or drop something off, etc.
For more information about ways to help with the project or just about how it came about, please check out the blog titled “The Start of Newbie Tubies” 🙂

 

Thank you!

The Importance of Self Care: 8 Ways to Pamper a Spoonie

Being chronically ill really takes its toll on both your body and your mind. So much about your life changes when you get sick and you lose control over so many aspects of your life, it can be an exhausting adjustment.

A lot of people think that being this sick just entails a lot of netflixing, hot baths, naps, and comfort foods. Although for some people, those things are a part of being sick, there is a lot more to it than that. Being chronically ill means sleeping endlessly and still not being able to keep your eyes open, counting down the minutes until your next dose of pain or nausea medication, being unable to shower because of orthostatic and heat intolerances, having to have other people brush and braid your hair, and all sorts of other fun things! (catch the sarcasm?)

That said, it’s really important that individuals with chronic illnesses take time to do things that bring them joy or make them feel good. Whether its self care, comfort items, fashion, etc. I’ve compiled a list of some of the most common “feel good” options to keep in mind if you’re a spoonie (click for definition of spoonie 🙂 ) looking for a pick-me-up or if you’re someone else looking for a gift for a spoonie 🙂

  1. Manicure & Pedicure

My personal favorite way to pamper/spoil myself is to have my nails done! It’s a small thing, but it helps me feel a little more put together/fashionable even when I’m in my pjs all day 🙂

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  1. Hair – washed, cut, styled

It can be extremely difficult for many spoonies to wash their hair due to either orthostatic intolerances, heat intolerances, extreme fatigue, or having central lines that can’t get wet. Some girls really like going to a stylist to have their hair washed once a week and having it cut and styled every now and then is nice too!

  1. Bath package – salts, bubbles, oils

Baths can be both relaxing and pain relieving for many individuals with chronic pain. Essential oils and epsom bath salts are great for pain and bubbles are just fun!

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  1. Flowers

Who doesn’t love flowers? As long as there’s no major allergy, flowers are a great pick-me-up. Especially if they’re a surprise!

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  1. Makeup

A lot of girls do their makeup every day, even if they don’t go anywhere. It just helps them feel like a “real person,” less sickly looking. My mom used to say that if you dressed up and looked nice, you’d feel good, too. Sometimes I think it’s true 🙂

  1. Cute PJs

When you spend a lot of time bed bound or homebound, it’s nice to have some cute, comfy PJ options. Being able to change into fresh PJs is refreshing—even if they are just PJs 🙂

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  1. Lotion, Body Spray, Body Wash Package

Every girl wants to smell good, right? Again, watch for allergies, but this is another good option for a gift!

  1. Fuzzy, warm everything!

Blankets, socks, cute leggings; comforting, warm, good for appointments and car rides—great fall/winter comforts.

 

There are plenty of other ways people like to treat themselves or care for themselves, but these are a few from the top of the list!

Whether you’re sick or healthy, it’s important to care for yourself and treat yourself every now and then.