I Have a Chronic Illness (Again) & This is How I am Dealing with It

You would think it would have been easier the second time around. I had done this already. Why was I experiencing so much mental trauma on top of everything else? I had nothing but time to deal with this; I had spent six out of seven days for the past eight months basically entirely alone 10 hours a day.

By Ty H. Phillips

In 2010 I was diagnosed with severe heart failure. This is no secret.

I have written about it and its attendant anxiety ad nauseum over the past several years. I have also written about my recovery, my struggles my ups and downs and all how I have chosen to walk that path. For several months now I have been quiet. I have not spoken to friends or family, I have not written, I have not done much of anything for that matter. I guess it’s time I shared why.

I am sick, once again.

In September, I went back into the hospital for breathing issues. My heart rate was elevated, I was unable to catch my breath and my blood pressure was spiked. I assumed it must be from anxiety yet after it did not abate after 24 hours I decided I needed to go to the ER.

As I walked through those familiar automatic doors, memories came flooding back. The bright neon lights, the alarms, the smells of sickness and disinfectant. It was a personal version of my own hell in Dante’s Inferno.

The admitting nurse took my name and vitals, printed out a plastic bracelet with my name and allergies attached to it and strapped it on my left arm. I looked down on it remembering how many times I had to wear one of those eight years ago. I played with it between my pointer and thumb finger.

As I followed her back, the noise of people moaning in pain filled my ears and I closed my eyes briefly. Even filled with my own anxieties, the sound of others suffering filled me with sadness. She took me into a room and told me to change my clothes and put on the gown. After I did, I sat down and sank into the plastic emergency room bed and laid back as they hooked me up to heart monitors, IVs and a pulse ox monitor.

Each step so familiar yet seemed to far away.

I thought I had escaped this nightmare. It was just four months from my last heart check up where I was told I was in the best shape of my life. I remember posting about it on Facebook as I walked out and going to get a celebratory doughnut from Dunkin. Now, it was like nothing had changed. It was eight years later, and I was sick all over again.

It has been nine months since this trial has started over and to this day, doctors have still not been able to find what is wrong. Tests have been run, blood work checked, second opinions have been given and yet, they shrug. Even as they can’t find the answer, my body continues to decline. A once strong a vibrant frame has dwindled down some 60 pounds. My face and figure now older, sunken and gaunt.

Like C.S. Lewis, having had to face his death, we made peace with it. Then we recovered and had to do it all over again. Like some sick celestial joke of give and take.

It’s an odd feeling. I never wanted to die—who really does? Yet I was settled into the fact that it was happening. I was sick, my heart was weak and I had to come to terms with it. When I started getting better it was a shock. No one, including myself and my doctors, expected it. I didn’t have the TV version of a second chance; the grass was not greener, the sky was not more blue. It actually scared me the first time.

I did not jump back into life like a newborn. I was reluctant and confused. I became overwhelmed with the suffering I saw around me and instead of running into the sunset like a movie epilogue, I became depressed and anxious. Eventually though, I grew out of the withdrawn mode and my hunger for life started to grow. My thirst for learning and experience came back and just as I was peaking, I found myself here again.

I told very few people this time though. I did not share it or discuss it outside of a select few people. In fact, I withdrew from the world. I closed down Facebook and Instagram, I ended relationships, and I shut myself off from the world. None of these things would be there in the final transition. No one could help and nothing could take this away. It was here and I somehow had to face it.

It didn’t go so well.

As the months went on, as test after test came back inconclusive, and as the medical bills kept piling up, I reached a crisis point. My symptoms had become so bad that I was unable to work. The smallest things left me breathless, faint, and dizzy and my body was dwindling into a version of myself I did not recognize. My sanity felt like it was teetering. I was not sleeping, I could not eat, save for a few hundred calories a day and my days and nights were no different. I felt sick, anxious, confused and depressed each hour of each day. I had lost all ability to focus and my reality once again became that death is looming.

You would think it would have been easier the second time around. I had done this already. Why was I experiencing so much mental trauma on top of everything else? I had nothing but time to deal with this; I had spent six out of seven days for the past eight months basically entirely alone 10 hours a day. The same four walls, the same couch, the same view out the window, the same path I had worn in the carpet from pacing back and forth. I hated it. I was a prisoner not only within this house but within my body. I could only stand or lie on my right side, every other position made me breathless or dropped my heart rate to the low 40s.

Something had to give.

Eventually I came to the conclusion that I had to accept this, I had to be okay, no matter how much it pained me, that I was sick again. My body may never be strong again but I could make my mind stable. I had time and that was all I had. I could sit. I knew it would make it hard to breathe, I knew I would physically pay the price for a few days, and I did, but I could sit. So sit I did.

I showered, brushed my teeth, drank a small glass of water and I sat down. I took a forced breath in and let it out. Then I did it again. I let my shoulders relax and my eyes gently float downward and I sat.

I can’t say what happened that day. I don’t know that anything actually did happen. I do know that after I got up, I was different though. My mind was more at ease. I was falling but I was okay with it. I am sick but it is what it is. There seems to be nothing I can do to change that fact. I wake up each day inside of a body that does not want to cooperate and I go to bed each night the same. But I did grab my mind and yank on the reigns.

I am not saying I have changed all that much. I still get down from being sick like this. I miss picking up my little girl and spinning her around and giving her piggy back rides through the woods. I miss my barbell and the feel of the weight on my back and in my hands. I actually miss being able to work. Who’d a thunk? That being said, each day my mind is a little stronger. Each time I sit, each time I chant, each time I read (thankfully I can do that again) I am a little more fully present than I was the time before.

So, there it is; I am sick again. It’s out there now. It’s real not only to me, inside my own little world, but within the small world that I circulate within.

Actually, let me correct that. My body is sick, I am okay. And that is a good start.

Photo: Pixabay

Editor: Dana Gornall

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