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7 Things I Miss About Life Before Gastroparesis

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There are very few things about life that don’t change when you become ill with a (or several) severe chronic illness. People ask all the time about how I must be missing college,
competitive swimming, and food (I am tube-fed due to gastroparesis), and of course I miss all of those things every day! However, when you are really, really sick for such a long time and your daily life is affected so greatly by an illness, you learn to miss not only the big things (like your college education or your job, etc.), but some of the smaller things that “normal people” — aka healthy people — may not think about the same way.

So, here are a few of the things about life pre-chronic illness that I miss…

1. The gift of spontaneity

girl in hospital bed holding koala stuffed animal

Oh how I miss being spontaneous. I would love to go out with friends for a last minute movie or party at 10 p.m.; oh but wait. What about my tube feeds? And did I already take my nighttime meds? Because I can’t drive if I did. I shouldn’t drive at night anyways if I’m going to be tired. Plus, how will I feel tomorrow if I go out so “late” tonight? And yes, 10 p.m. is late for me. I know, I’m 20 years old and 10 p.m. is late. Don’t judge what you can’t understand! My body has a mind of its own.

You know what else I would love to “spontaneously” do? Eat a midnight bowl of cereal. Because yes, one of the foods I miss most is cereal. And I used to eat it at any time of the day. Honey Bunches of Oats with frozen blueberries. But I can’t have Honey Bunches of Oats or frozen blueberries so that’s a no-go! Plus, if I were to spontaneously eat anything,
I’d pay for it. Big time!

There aren’t a whole lot of spontaneous adventures when you have to plan for medical needs. I still like to try to find them sometimes, and my family is helpful in that, but it’s not the same as when you’re healthy. Having an extremely limited energy supply and requiring medications and infusions multiple times a day is very limiting!

2. Structure

OK, I know I just said I miss spontaneity, but I also miss routine. I miss going to school. I miss working. I miss having a social life. I think what a lot of people don’t understand about those of us who can’t work/attend school full time is that we would give anything to do just that! Netflix, crafting and sleeping gets really boring really fast! I know many people would love to have a day or a week to just lay in bed binge watching their favorite shows and eating junk food, but that isn’t what it’s like when you’re sick. It’s a chore to stay in bed all of the time. And we aren’t comfortable while doing it! A lot of us don’t even get to eat!

Even when we can come up with simple routines and other productive things to do from home, it’s not the same as leading the lives we had planned out for ourselves pre-illness.

3. Exercise

girl standing on mountain at sunset
My family and I love to go up on the mountain to see the sunset. This is about as adventurous as I get during my tough times!

The pool. The gym. Running. What I wouldn’t give to be able to workout like I used to. Exercise always made me feel so much better both physically and emotionally/mentally. Now I’m lucky to get in a walk or a 15-minute floor exercise! Some days, I hardly leave bed. Working out is something I definitely miss a lot when I’m too sick to get up and move. I know a lot of people see it as a chore when it’s a part of an everyday routine, but it is such a gift to be able to take care of your body and self like that! Even when I can do some floor exercises or yoga, I can feel the difference.

4. Showering

With postural orthostatic tachycardia syndrome (POTS), showering is a chore. I can only stand up in the heat for a short period of time before I pass out or throw up, so I have to get everything done quickly and efficiently. I also have to put a cover over my central line on my chest so that it doesn’t get wet or infected. By the time I get out, I’m exhausted and often barely have the energy to get dressed and brush my hair. Often times my mom helps me do my hair so I can crawl into bed and sleep it off.

I miss long, hot showers that felt refreshing and cleansing. I miss showering whenever I wanted to without thinking if I had time for a nap!

5. An active social life

three girls forming a pyramid on hands and knees
A photo from my first (and only) year at college! Such fun times.

Your social life usually changes drastically when you become chronically ill. For me, it pretty much took mine away. So yes, I miss having a social life! I miss going out and hanging out with people my age. I miss meeting new people. I miss wearing cute clothes all the time and actually feeling my age. But, I’m thankful for the people that do come around and see me and I’m thankful for all that my family does to entertain me at home.

It’s pretty common to lose a good deal of friends when you become chronically ill. These relationships can be straining for both sides. After a certain point in your illness, friends just stop asking you to come out with them; either you can’t eat, you’re too tired, or you have an appointment and they have heard “no” a few too many times. Then eventually they stop texting at all. And it’s hard for us (the spoonies) to keep up with reaching out to others, too. You really find out who your true friends and supporters are.

For me, my family has been there for me through it all. I wouldn’t be here without them. Sadly, that is not the case for everyone, but we all find out who our “people” are.

6. My wardrobe

Let me tell you something about (severe) gastroparesis and small bowel bacterial overgrowth (SIBO). You can’t wear real pants. Ever. First, there’s the constant weight fluctuation. One day you’re a size 3, the next you’re a 00. OK, so maybe that jump would be from one jean season to the next, but it still sucks having to buy new pants every season. I own pretty much every size from a 7 to 00. My little sister loves when I go through my closet each year.

Secondly, there’s the bloat. And the bloat never cooperates. I mean girls, you know what it’s like to be bloated during your time of the month, but try being bloated any time of the month. Any time you take a sip of water, any time you eat, any time your gut decides not to go to the bathroom for a few days/weeks. (Sorry, TMI?) I hate the bloat. It messes with my clothes, it hurts, and it is just unpleasant in general!

I’m currently a size 00, but I can’t ever leave the house in jeans because my stomach bloats so badly that it looks like a balloon is blown up in there. And when that happens, if I’m wearing any type of pant that has a constricting waistline, my nausea and pain will skyrocket. This also means I will usually be found in an oversized or loose shirt of some kind because I don’t like to wear shirts that hug my bloated stomach or my feeding tube.

Let’s just say, I miss when clothes were fun!

7. Feeling in control of my body

This is probably the biggest thing for me, and it kind of wraps it all up. It’s not easy being fed through a tube at night and relying on IV hydration. It’s not easy not being able to exercise and eat healthy the way I want to. My body changes and adjusts to these illnesses in whatever way in needs to without me being able to do anything about it. I take a huge amount of medication and supplements to try to help symptoms, keep vitamin levels right, try to help my hair from falling out, etc. I have side effects and interactions that I can only deal with as they come along. I have doctors and nutritionists telling me how many calories I should be getting in and how much weight I need to gain.

Every week I have doctors appointments and nursing visits where everyone asks me personal questions that most 20-year-olds don’t have to talk about with other people. I have very little privacy and very little control over things that should be mine to dictate. It’s not something you think about until it’s something you face up front. Honestly, I’m pretty used to it now. It’s not a big deal to have people asking me questions about my weight, my bathroom habits, or my sex life anymore. It’s just part of my new normal. Although it isn’t what I would have chosen, I’ve learned to accept and be content with my life for what it is today.

Chronic illnesses have taken a lot from me, but if they’ve taught me anything, it’s that you have to be grateful for everything you have in the now, and look forward to and be hopeful for a better tomorrow.

Follow this journey on Positively Rachel.

Originally published: September 26, 2016
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