The Pain Doesn't End When You Leave the Hospital

By the end of April, I had already lost a month of this year to the hospital; I spent about half of February and half of April as an inpatient. In the midst of this time my cousin got married — I was unable to stand up as a bridesmaid so she had her wedding recorded and sent to me. My grandmother also suddenly passed away. Oh, did I mention that I am a full-time graduate student?

While it’s been a few years since I’ve had long hospital stays, it doesn’t take the sting of realizing those are days I will never get back. I have gotten better at coping with these stressful and draining situations, but regardless, bouncing back is a challenge.

We all lose time — and it isn’t necessarily due to illness. While I’m happy to be home, it’s not all rainbows and sunshine. I think it’s important to recognize once someone is out of the hospital, that doesn’t make them instantly well. It just makes them stable enough to go home. I’m still fairly sick. I’m also recovering from a great deal of sleep deprivation because the hospital world does not sleep.

I’ve been out for about two weeks. Simple things like showering and doing my hair are completely exhausting. Showers are like a race to get out, rather than a time of relaxation. There have been times when I’ll get out of the shower only to lie on a towel to recover for a few minutes. It feels good to have clean skin, and I know it’s important, as the sores from the heart monitor leads heal up. I hope they don’t scar.

I have follow-up appointments to continue my path to wellness, but this feels like I never left the hospital to begin with. Walking downstairs to get my breakfast in the morning feels like I ran a marathon. My heart races doing even the most minimal things. I should interject that part of my recent stay included mononucleosis, and I’m still dealing with cold sweats and general fatigue. I honestly can’t say which is worse. My clothes will be drenched with sweat but I’ll be freezing. I want to cover up because I’m so cold, but this only makes me sweat more. It’s most frustrating when I just want to go to sleep but my bed sheets are soaked with sweat. There’s nothing I can do except wait it out. Healing takes time and patience, but that doesn’t mean it’s easy.

I’ve spent my whole life in and out of the hospital and it never gets easier recovering from a stay. I tend to get nightmares about my hospitalization following a stay. To be honest, I’ve been in therapy to deal with this and it was helpful. However, there is no “fix all” for the nightmares. Essentially, I’ve felt a strong need throughout my life to try to stay as calm and collected as possible, when in the hospital. I realize panic will not aid in healing, and with so much uncertainty at times, it’s important not to jump to worst case scenarios.

However, by doing this, I never allow myself to feel what I am going through. The nightmares are a delay of my feelings. I often refer to them as stress-mares because I’m not coping with things during the daytime, my brain then plays it out at night. I’ll have dreams where they will be digging for an IV and unable to place it. This happens to me many times while hospitalized, but again, I remain “tough.” Sometimes I feel the pain in my dreams. In the days following, I often cry for no reason. I mean, of course there is a reason – it is all quite scary.

Medications, sleep deprivation and the hospital environment can lead me to hear things that aren’t there. From what I’ve read this isn’t entirely uncommon. Every once in a while, I’ll look over at a parent of mine to ask them if we just had a conversation about x, y, or z. It’s a bit disconcerting when the answer is “No, we weren’t talking at all.” Sometimes I’ll reply out loud — thinking I’m answering someone’s question. I’m often embarrassed when I realize I’m in some kind of hospital haze. I know this happens, so I’m able to separate what’s real from what isn’t. I hope I’m always able to do that. I’m fortunate that I have family and friends visit me and ground me in reality. I’ve been lucky to have nurses that make social stops into my room so I feel more than just a body lying in a bed.

I’ve learned over the years to be diligent about self-care. If I start to feel overly anxious once I get home, I’ll play ukulele or sing. During these past two hospitalizations, I put all school work (I’m in graduate school for my MFA) and writing on hold. Instead, I read books for enjoyment and watched TV for entertainment. I did the best I could.

Previously, I would dig myself into an inescapable hole of responsibility. I felt I had “lost time” by being hospitalized. I felt guilty for being sick or not meeting volunteer commitments. I felt guilty for canceling plans with friends even though I was recovering. I would push myself far beyond what I was capable of, fueled by a steady supply of caffeine. I would wear myself down further and push myself more. It wouldn’t be long before I’d be curled up in a ball on the floor crying because I was exhausted. Everything seemed insurmountable.

I’ve worked hard not to get to a place like that again. However, after laying in a hospital bed for two weeks (as of recently) my clothes don’t fit me and something so small like that makes me feel like the world is ending. I’m almost convinced I should stick to my yoga pants until some of the weight gain from the medications wear off. The last thing I need right now is an extra jab to my self-esteem. My hair is falling out, something that can happen when your body experiences health stress.

I don’t know that hospital life (as I’ll refer to it for those who have experienced it) is ever fully understandable to those who haven’t lived through it. How could it be? At the same time, I don’t want people I know to understand it because that means they’ve been there themselves, and I wouldn’t wish that on anyone. It takes a great deal of vulnerability to allow someone to see you at your worst, and I try to protect my loved ones as much as I can. My closest friends realize I won’t have my usual energy and are extraordinarily protective of me. It still makes me wish that I had superhero healing powers so I don’t have to see the pain in their eyes when they know I’m so sick.

Surprisingly people do tell you how good you look after you’ve been hospitalized. I’m always slightly amused by this. I’ve gotten good at “looking healthy” make-up. Sometimes I’ll spend the extra energy in hopes I can trick myself into feeling better through looking better. I’ll often get my hair done shortly following a hospitalization. Right now I’m thinking peach hair with purple pieces woven through.

I’ve been fortunate to build a solid online community of others who have had similar experiences. Those who are healthy often assume I can bounce back to how I was before. My chronically ill friends remind me that it’s said for every day in the hospital it takes a few days of recovery — this is a fact I have to remind myself of.

What do you do if your friend or family member is sick? First, message them to see how they are feeling. Nothing is worse when you’re sick and it feels like everyone has disappeared. Often times I don’t have enough energy to talk on the phone but text messages mean a lot.

When your loved one gets out of the hospital, don’t expect a lot from them. The pressure to bounce back isn’t only a personal battle, but can feel like a life battle when others don’t understand you’re not fully well. It’s generally not possible to immediately go back to how life was prior to being hospitalized. People sending sloth pictures, funny videos and playlists also helps. When out of the hospital, a meal brought over can also be helpful – realizing energy is limited and short visits are better than long ones. Overall, be patient and supportive.

I hate that my body falls apart the way it does. I hate that I can’t fully explain what my experiences have been like because they are my own. I tough out my way through pain and the unimaginable, but it catches up with me eventually. I think part of my frustration is I love life so much that I get angry when I get “taken out” of living. I love my determination and ability to overcome. I know I can get through this like I’ve gotten through so many things before. I don’t feel shame in acknowledging it’s very scary. Patience and showing kindness to the body’s process of healing is a learning process. The struggle doesn’t end when the hospital stay is over, but realizing this is the first step in moving forward.

This article previously was published at Ravishly.