How I Live a Life I Love With Chronic Illness

I am sick. I have been chronically ill since I was 14, and I would argue that I live a pretty darn good life. Click here to read my story.

It definitely wasn’t always like this though. If my 14-year-old self saw the life I was living now, I would be blown away.

I am proud to say that I am a walking cliche. I got sick, watched the life I knew slip away, then fell back in love with life all over again.

So how do I do it? How do I crush bucket lists, create movie-worthy moments, and keep my spirits up while living in a sick body?

Where There’s a Will There’s a Way

Or something like that.

Honestly though, above everything, it came down to how much I truly wanted to live a good life.

I realized how much I love the feeling of being alive and started prioritizing this feeling.

I got fed up with living with chronic illness and not having control over my life. A life controlled my doctor’s appointments, medications, and the view from my bed. I’ve seen what life is like when you’re not living at all, and I didn’t like it one bit.

It was a combination of reaching a state of acceptance while simultaneously deciding to not settle for a life of illness. I came to the realization that this illness isn’t going anywhere, but these years of my life were. If I was going to live a life I love living, I had to create it for myself and do whatever it took to get there.

Life Is About the Simple Moments

When you think of bucket-list-worthy moments, you probably think of jumping out of planes, swimming with sharks, and climbing Mount Everest. You might think that the best stories always come from death-defying stunts and grueling tasks.

I used to think this too. When I got sick, I had this all-or-nothing mindset that I either had to climb a mountain or spend the day in bed- and there was no in-between.

Turns out, this isn’t true at all. Traveling and exploring this world is just as fulfilling at a slower pace. You can hang out with friends without committing to an exhausting day-long adventure. You can feel alive and create a happy memory without trading all of your energy for it.

Some recent memories that make me smile, but cost barely energy at all:

• Doing work on the side of a cliff instead of at a desk
• Watching the sunset with my best friend
• Laying on a blanket next to a river and doing absolutly nothing…
• then walking around barefoot
• Driving with really good music playing and the windows rolled down
• Sitting on the floor of some hallway talking to my friends for a while
• Drinking really good coffee while watching a really good sunrise
• Putting flowers in my very dirty and very tangly hair

Chronic illness means my life moves a little slower. Sometimes I have to pop a squat in random places to take a break. I end up staring at a tree or the sky or having a good conversation with the friend I’m with. Sometimes I walk a little slower, but that just means more time to notice everything pretty around me.

You’ve heard the saying, “quality over quantity,” but what if you tried the opposite? Instead of just a couple of memories of super grand experiences, what if you had a million and one memories of simple moments that made you smile? Spoiler alert: the super grand experiences will still happen as well:)

Sometimes It Really Is Worth the Pain

Sometimes (okay a lot of the time) I push myself a little too hard. Sometimes I don’t entirely listen to my body and do things I know full well will make me feel sick. I go too long without resting and rally when I know I shouldn’t. Lucky for me, it is almost always well worth the extra pain.

I don’t feel good pretty much all the time, which means I have been in pain through every moment, memory, and major life event over the past 4 years.

Even in my happiest memories, I can still picture the pain.

But, it’s okay.

Memories of genuine joy always overpower the memories of pain in my mind.

When I’m falling asleep at night, I get flashbacks of tubing at the lake and laughing so hard I couldn’t breathe. I remember skidding across the water when we fell off and every half screaming/ half laughing conversation we had while being dragged by the boat. I got a pretty gnarly headache later on and there were definitely a few days spent on the couch after, but I only remember that part when I try to.

I hiked the Grand Canyon last June. I was wearing Birkenstocks and was with my best friends. The views were indescribably jaw-dropping and I was laughing with my friends the whole down. I was dizzy the whole hike back up and almost fainted. I definitely scared my friends half to death and also walked with a limp for a few days after, but I can whole-heartedly say that it was worth it.

A couple of summers ago, I spent the night on a floating water trampoline in the middle of a lake under a sky of stars. I can guarantee my symptoms were horrendous the day after, but I honestly don’t even remember which ones they were.

I almost fainted at my high school graduation while waiting to walk across the stage. That one’s just funny.

The point is, your mind and perception of the world are based on your experiences; the things you’ve seen, memories you’ve made, and the thoughts that run through your mind.

Flood your brain with happy moments in beautiful places with the people who make you feel like yourself. Have so many good memories that your brain doesn’t remember the pain.

Control: When To Let Go and When To Hold On

Chronic illness has made many things beyond my control. Luckily, I have always preferred to just go with the flow to some extent, so this was easy to get used to. I also found ways I do have control over my own life.

So I go with the flow. In fact, I love going with the flow.

Some days, my symptoms take over and I have to cancel plans. It’s a bummer of course, but I remind myself that it was probably for a reason.

Some days, my symptoms give me a break and I almost feel healthy again. I am beyond grateful for those days and I take full advantage of them. Maybe I cross something off my bucket list or hang out with friends since I can be fully present.

Even when chronic illness has the wheel, there are always some aspects of my life that are still in my control. When the need to rest is my priority, well, resting can be done anywhere. My favorites have been on a floaty in the middle of a lake, sitting in a wildflower field, and laying under a sky of stars

So in other words, I started living a greater life by both letting go of control and getting really good at handling it.

I think that’s kind of how life goes. Some things are in your control and some things aren’t. You can make your own decisions and do everything within your power to create a life you love, but no matter how hard you try there are some things that are simply out of your control.

Priorities

I have a very limited amount of energy. Chronic fatigue is a part of me. I can’t bounce back like most people, and a good night’s sleep is unfortunately not a quick fix.

The only thing I can do is work with it, not against it.

I ration my energy throughout my day, and if I want to have the energy to do the things I love, I have to leave enough energy to do so.

This was a very positive thing in that I learned a lot about myself and what I love the most. I learned what things are worth my energy and what aren’t.

Key findings:

• Seeing the world is at the top of my priority list
• I hate following a tight routine, it is an energy drainer for me
• Drama and useless arguements are the biggest energy wasters
• Rock climbing takes a lot of energy and it is entirely worth it
• Sunrises are always worth the lack of sleep
• School is important but never let it take all of your energy from you
• There are some people who will always be worth the energy, and some who just aren’t
• Never feel guilty about taking care of yourself and your own needs

When it comes down to choosing where to use my energy throughout the day, I prioritize the things I love; the things that make me feel alive and keep me going.

So what about school, work, and all the other non-negotiables? How do I manage these on top of a fulfilling life?

It Really is Okay To Do Things Differently

When I got sick, I was a freshman in high school. I was going to school full time, working after school, and on a competitive rock climbing team.

If you’re wondering how my sick self kept up with all of this, well, the answer is I didn’t.

My grades dropped, rock climbing became next to impossible, and I can’t even describe how painful it was to keep a healthy face on at work all day.

The moment I admitted to myself I couldn’t do it all, is the moment I got my life back.

I quit my climbing team. I stopped forcing my body to train like an elite athlete 12 hours a week and *shockingly* felt a little more human. I still climb, but without the competitive aspect, and genuinely love climbing for fun again.

I quit my job. This one was a little heartbreaking because it was my first job and as I talked about in this post, I went from being known as one of the “giggly girls” to just not being able to do it anymore. However, it truly was a great decision for me. Now I nanny. It is way easier on my body, I make my own schedule, and best of all, I choose my own hourly rates (which are way higher than the pay rate at my old job;)

For my senior year of high school, I switched to online school. This one truly was the game changer for me. I didn’t have to force my body to follow a rigid schedule and instead did school whenever I could. Schoolwork could be done from anywhere which meant no more worrying about attendance.

This year, for my freshman year of college I chose to go back to in-person classes. I’m definitely grateful I got to experience college classes, but for the sake of my health and happiness, I will be returning to online classes next year.

In a nutshell, this is how I fell in love with life while living with chronic illness.

Whether you have a chronic illness yourself or are just looking for ways to improve your everyday life, I truly hope this was helpful for you.

From the bottom of my heart, thank you for taking the time to read this. I truly hope you will take advantage of the lessons I’ve learned and improve your own quality of life, even if it’s just a little bit.