Why I Actually (Dare I Say) Enjoy My Time in the Hospital With a Chronic Illness

Today marks two years since the start of my committed relationship. That’s right; happy anniversary to me and my IV pole. Damn, it’s been a wild ride.

Two years ago today, I received my first scheduled IV hydration. It was my doctor’s idea, and while I was hesitant and pretty resistant at first, it’s clear now that he was right all along. He could see, in that moment, what I was refusing to acknowledge and choosing to be blind to. He could see my “normal” was quickly deteriorating.

Two years ago, I was struggling physically more than I cared to admit (and more than I actually could recognize). I had near-syncopal episodes multiple times a day. I struggled to drink enough water due to ongoing nausea and even when I did drink in excess, I never felt any relief of my symptoms. I rarely saw a resting heart rate anywhere under 100. I couldn’t stand during worship in church without having to take a break. I had blurry vision almost every day and hardly even noticed it anymore. All of this, and somehow I still didn’t want to agree to more treatments.

Nevertheless, two years ago, I agreed to a trial run of hydration as needed. Things escalated quickly as it became clear that this treatment was about to change my life.

I wrote a post on this last year too, declaring my thankfulness for IV fluids. Somehow, things have changed so much even just since that day, even just in this past year. If you had told me on this day last year, as I wrote that post, that soon I would get hydration two to three times a week, that I would also consistently get additional PRN meds, that I would have an implanted port or that I would administer my own hydration after self-accessing said port… yeah, I probably would have run, terrified, quickly, in the opposite direction without looking back.

Don’t get me wrong; I don’t regret the decision to begin IV therapy as it’s been the best thing for me. But, it’s probably a good thing I couldn’t foresee the future on the day I sat in that doctor’s office and agreed to a “trial run” of infusions. Had I seen what was coming, I never would have agreed to start. In these two (very short) years, I have reclaimed certain aspects of my life while giving up others. I have devoted more time to the infusion center than I have to my own bed. I have spent (way) more money on medical bills than I have on rent and utilities combined. I have shared more personal and intimate moments and struggles with my nurses than I have with my closest friends.

There’s a quote I’ve seen a few times that says something like, “chronic illness turns friends into strangers and strangers into friends.” While I’m thankful the first part has largely been untrue for me, the second half has been the best truth spoken into my life. I get asked a lot, and especially now with the port, why I don’t switch over to doing my own care and cut out all the time and money I spend at the infusion center. People just don’t understand why I’d voluntarily commit so much time to the hospital, and I can’t say I blame them. From the outside looking in, I’m sure it sounds miserable. But the truth? The short answer? It’s good for me. It works. It makes my life easier.

Here’s the long answer: it’s good for my physical health, but it might be even better for my mental health. In a world that sometimes feels like it’s spinning much too quickly for me to keep up, the infusion center and the people there have remained constant. When I’m there, I don’t have to worry about anything. I’m well taken care of in more ways than one. My nurses are dependable, predictable and more importantly than that, they are my friends.

I’ve never really said it out loud, but somehow it’s even become, dare I say, enjoyable? Maybe because of the consistency and predictability I so badly crave, or maybe it goes even further than that. We catch up on my life and I learn about what’s going on in theirs. I look forward to sharing my good news with them, and they are a refuge on days when the news is less than good. They care enough to want to know more about me, my family and my personal life. They call my doctor to advocate for new meds and treatments, they teach me all I need to know for my own care and they encourage me to do what’s right when I’m struggling to do it on my own. They cheer me on when I fail to recognize my own accomplishments. They remind me of my inner strength on days when I can’t see it, and they bring smiles (and somehow even laughs) to my face on days when no one else can.

In the past year, since my last post, they’ve seen me wrestle emotionally with the port decision (for months and months), they’ve heard me vent about my frustrations (both medical and personal), they’ve sent me off on every trip I’ve taken, they’ve given me pep talks before scary appointments and they’ve continually and patiently taught me it’s OK to need help sometimes. They still haven’t convinced me to use call lights or to actually ask for blankets when I’m cold but hey, we are all a work in progress.

So no, I’m not willing to give this up, not even if no one else understands why. Not even if I can’t quite put it into words myself. Not even if it means giving up precious hours of sleeping in my own bed. Not even if it means spending 10-plus hours a week in this recliner, and not even if it means spending $6,500 a year out of my own pocket (yep, that’s not a typo). Some things, you just can’t put a price on.

In some ways, it feels like I’ve been doing this forever; this reality feels as comfortable as though it has always been present. But in others, that scary and emotional day two years ago feels as raw as though it was just last week.

Two years ago, I couldn’t have imagined this being such a big part of my life and I definitely couldn’t have imagined actually feeling desperately thankful for the ways in which it has changed me from the inside out.

So today, from my familiar infusion recliner, I choose joy. Today, I am thankful — thankful my doctor knew what was best when I didn’t. Thankful these treatments have greatly improved my quality of life. Thankful my nurses have become my biggest supporters and most consistent friends. Thankful being a patient has made me a better health care provider. Thankful for the lessons I have learned, as hard as they were. Thankful for the necessary strength and resilience these two years have brought me. And thankful that on this day, two years ago, I was blissfully blind to what the future would hold. Had I seen the future, I never would have agreed to this life, but damn, I’m glad I did.

Happy two-year anniversary, IV pole. Thanks for the fluids. Thanks for the life lessons. Thanks for the friends. Thanks for the memories. Thanks for always being by my side.