Take a moment. Think about what thoughts race through your mind as you head to the hospital. You and I both know once you’re dropped off at the emergency room entrance and you walk (if you’re able) through those automatic doors, you don’t know when you’ll feel fresh air on your face, again. It’s a scary feeling.
Until you’ve experienced a flare up that spirals out of control, it’s hard to put this into words.
Anytime I’ve gone to the ER in the past 12+ years, even if there’s a roomful of people anxiously awaiting care, I’m brought back immediately. By the time I get to the hospital, I’m always vomiting or too sick to even stand on my own. Sometimes the nurses quickly force an IV in my hand, rushing to get pain medication through my veins as fast at they can. The distress and dire situation is hard to put into words. Each time I feel like the world around me is muffled. I zone in on my husband and look into his eyes for help and for hope. Not again. Please, not again.
Each time, even if it becomes routine, is never easy. In my case, I know I’m going to have to guzzle that delicious Barium drink and get rolled down for a CT scan. The results are never good. I have yet to have a doctor walk in and say, “Everything looks great, no cause for concern.” As you lay in that hospital bed, in a state of sleepy glee from the pain medication, you know you’re about to wage war against your body again.
You’re disappointed. Frustrated. Fed up. Upset. Emotional. Exhausted.
Maybe even desensitized at this point. You may have felt close to getting to the top of the mountain, only to be back at the bottom. When this is your reality, try to pause. Go to your happy place. Think of the times you’ve been able to live life to the fullest. Think of how wonderful it feels to get out of the hospital and how something as simple as walking outside is such a joy. Take these hours, days, weeks and sometimes months to focus on you.
Sure people will visit; they will text; they will call; flowers will come in on carts. But at the end of each day, in the middle of the night, it’s just you and the beeping of the machines. The “quiet” rush of hospital staff in and out of the room. During those times I count from 300 to zero. Counting backwards seems to distract me, it tires me out.
Unless you personally have Crohn’s or ulcerative colitis, there’s really no way of explaining this.
We can’t describe how tiring – emotionally, physically and mentally – it is to constantly feel at war with your body. Every single decision you make, every single emotion you feel can be a trigger that brings you back to the hospital. Knowing that each hospital visit isn’t your first and far from your last. Knowing that for the rest of your life you are going to have to face the unexpected, endure painful procedures and tests, drink disgusting concoctions, look at yourself in a hospital bathroom mirror and think–what’s happened to me, how did my life come to this?!
No matter if it’s been weeks or years since your last hospital stay, it’s safe to say these feelings free fresh and they are always looming. Through the years, I’ve built up a bit of a wall and the worries of hospitalization don’t feel so suffocating. But it’s always there.