The first weeks after I was discharged from the hospital were very difficult emotionally. I wasn’t used to being at home and not having to study, to look up cardiac drugs or practice pharmacology math problems. I wasn’t used to being a PATIENT. I didn’t know what to do with myself. I had way too much time to think. I would think of symptoms I was having and upset myself. I was having odd feelings from the steroids I was taking. My heart was racing and I felt anxious. I felt crawling sensations in my arms and called my neurologist. She said she thought I might be experiencing side effects from the steroids.
My vision was still blurred, but getting better daily. I would feel better when I could do something that required my vision. I cut peppers on my cutting board. I folded clothes. I walked outside, looked up through the trees and saw the shapes of the leaves on the trees against the blue sky.
My doctor told me to take a break from running to give my body a chance to heal from the exacerbation. Instead I took walks down my road with my dog. I know the importance of movement to healing and I tried not to overdo it. I did feel some tingling in my legs as I walked but I enjoyed the sense of accomplishment when I returned home, knowing that I was still able to walk.
As a nurse, I was experienced performing “neuro checks” on patients to test their cranial nerves and the health of their nervous system. I would give myself mini-neuro checks before getting up in the morning. I would declare myself OK (other than my eyesight) and feel better about myself.
I came to appreciate all the things that I could do. At first I had trouble seeing my children’s faces and I would reach up and touch their faces to fill in the pieces. Gradually I was able to see more and more detail. I judged my recovery by how much detail I could see. I can see K’s facial features, then I could see her eye color, then I could see the dark blue outline around the sky blue color of her iris. I was so happy the day I could see the dirt on my son’s face.
During the second week I had finished the course of steroids. I felt that I had recovered enough to run again. I ran several times around the soccer fields near my house, about a ¾ mile loop. I didn’t want to take a chance running on roads. I was able to run the same distance and intensity as before my diagnosis. I felt exhilarated. The bright sun bothered my eyes so I wore sun glasses. I ran at the soccer fields almost every day after that.
My eyesight was near perfect by the end of the second week. I began working on my pharmacology math problems again. My pharmacology test was in a week and I decided that I was going to take it. I worked at it every day for an hour. I still had a month left in my new nurse orientation on the cardiology floor and I felt like I was ready to go back to work. As I finished the problems I would think, “I’m OK. I can do this. I’m gonna be OK.” I went to my neurologist on day 12 after my diagnosis and she declared me ready to go back to work.
I learned throughout this experience of my exacerbation recovery how important it is to measure recovery by the small hurdles overcome. I experienced so much frustration with my limitations and not knowing if I would completely recover. But I also felt such pride in my accomplishments and abilities that I rejoiced in every task that I was able to do as I recovered.
Most of my eyesight was back within about two weeks but I still had some trouble looking at neon lights. It took about 6 months for my eyesight to recover to 99% of what it was pre-diagnosis. Oh, and by the way, I scored a 98% on my Critical Care Pharmacology test.