Recovery: The Real Challenge with Surgery

The past two weeks have been even more challenging than my “normal” for both my body and my mind. I had surgery two weeks ago to place a new/additional feeding tube and we ran into some challenges and now I am trying to heal and recover.

I’ve had to spend more time in bed since getting home from my surgery because I’ve been unable to move much on my own. For the first week I couldn’t sit up, stand, walk, sit down, go to the bathroom, brush my hair, or do anything for myself. Being 100% dependent on other people is really hard, regardless of the fact that I was already disabled and very dependent on my parents for so much even prior to surgery.

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Kevin needs his new tube placed!
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Baxter alerting me.

I have to admit that the first week or so post- surgery is all a blur. There was lots of pain, many doctors, a painful car ride home (or two), a lot of sleeping, medications, ambulance, pain, another ambulance, an awful ER, pain…. But what I do remember is that both of my parents were right there by my side the whole time. There was never any talk of hiring a nurse to do the hard work or asking another family member or close friend to come help so my parents could go back to work. Every day I had at least one if not both of my parents there taking care of me, no complaints or mention of using up their sick days.

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3 tubes?!

For the first many days I slept 20+ hours a day with the help of pain medication, nausea medication, and sedatives, which all together helped make me more comfortable. After my ER trip on Monday/Tuesday I stopped taking the heavy pain medications because they delay gastric emptying so I also stopped sleeping and instead started having major insomnia again. By Wednesday/Thursday I was starting to walk on my own and eventually getting out of bed by myself, too. Although I run out of energy quickly and my pain levels are still severe, every step forward is worth a celebration.

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Our one and only trick or treater 🙂 My favorite visitor!
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Always blessed and spoiled by my parents’ coworkers!

Having such a supportive and involved family made all the difference for me; I didn’t have to worry about keeping up with meds or finding a good nurse or anything because my parents and sister were on 24/7 “Rachel Duty” for as long as I needed them. We also have an incredible community that supports me by sending cards, flowers, and gifts but they also support my parents at work and through facebook and texts/calls of support and well wishes. Being the parents and care takers of a young adult as sick as I am is no easy task and it’s extremely important to have that support.

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Mom sleeping in the ER.

Surgery is tough, but recovery is hell. Waking up each morning in major pain and knowing it’s not going away isn’t easy on anyone physically or mentally, but each small improvement or sign of progress gives me hope. Life is precious and every day that your body is functional and pain free is a gift; I encourage you to take advantage of every day and live life to the fullest, always follow your heart and do more of what makes you happy. Find joy in every day.

Xoxo

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.