How a Diary Could Help If You're Experiencing PTSD

Some people think a person must have been in a war zone, have seen catastrophic events or been in a violent situation to experience post-traumatic stress disorder (PTSD). But I have learned that is not always the case. Research by Johns Hopkins Medicine shows about 25 percent of people who have spent time in the intensive care unit (ICU) and survived a critical illness have experienced PTSD. I am one of them.

• What is PTSD?

A few years ago, Johns Hopkins reintroduced the idea of keeping ICU diaries. The research described it as a preventative strategy that was originally started by Scandinavian nurses. The diaries included what happened to the patient each day, who was in their room, which goals they met and notes from the clinicians and family. In August 2012 I was recovering from brain surgery, or a craniotomy, to remove a brain tumor (they couldn’t get it all). Looking back on the things I have been through with PTSD since then, I wish I would have kept an ICU diary much like Johns Hopkins has suggested.

I believe these types of diaries could help the patients put their story and timeline together, as well as help improve long-term mental health. I know firsthand that many patients don’t have clear recollections of what happened to them in the ICU. Some of us need that clarity to heal. Some patients that have had a craniotomy like I did will wake up soon after the surgery, stay in the hospital for about a week and then go home. But I had many complications, mainly obstructive hydrocephalus and severe edema. For my brain to rest and heal, I had to be heavily sedated. I had a feeding tube in my nose (which I hated as my nose is very sensitive anyway) and I wasn’t breathing on my own so I was on a mechanical ventilator. I was told that after about two weeks on the ventilator my throat began to close, so they had to put a tube in my neck to go directly into my airway called a tracheostomy.

I later read in my medical records that I experienced respiratory failure. I had no idea! I also remember I was hallucinating which at the time felt like real life. I was in my hospital bed with floor to ceiling windows. I could see beautiful, green, lush landscape or a garden. All of a sudden I felt like I couldn’t breathe and in my “dream” I was trying to signal for help, but I couldn’t see anyone around and no one came while I felt myself suffocating. It was worse than any nightmare I have experienced because I truly thought this was real. That “dream” haunted me for a few years.

I also remember one of the worst and most helpless feelings I have ever felt in my life. It was the first time I woke up after brain surgery. From what I have been told, I would be brought out of sedation every once in a while to check things like my pupils and my arm and leg movement. The first time I woke up I was scared to death. I had no idea where I was and why I couldn’t talk (due to the ventilator). I couldn’t move my left arm and both legs — a temporary side effect from surgery — and I couldn’t see normally. I also didn’t understand why my right wrist was restrained, but apparently, I had been tugging at the feeding tube. In front of my hospital bed, I saw a window with a cross above it and a window on the left. I also remember a hazy clock, but I couldn’t see anything on it because my eyes weren’t working correctly yet. I didn’t hear or see anyone around me so I started to panic. All I could do to get anyone’s attention was hit the bed with my right hand that was restrained. It felt like I was doing this forever and no one could hear me. The panic got worse. “What was happening to me?” was all I could think. I was so scared. Then all of the sudden my sister appeared. She told me everything was OK, while tears ran down my face, and explained to me why I couldn’t talk, move and why I was restrained. We found a way to communicate; she would ask me a question and I would blink once for “yes” and twice for “no.” There were many more scary events and terrible hallucinations during my several weeks in the ICU. I also spent 10 more days at another hospital when my blood clot in my right leg traveled to my lung and I had a pulmonary embolism. I had more scary hallucinations there and even ordered my husband at the time to recite things I would tell him. The doctors told him to play along to avoid agitating me more.

For about two years after being in ICU, I had flashbacks and bad dreams that would wake me up scared to death. I journaled a lot and talked about these with my husband. He was able to clarify so much of the missing memories, the timeline and many things that happened that I didn’t know about. But I had the urge to know and understand more about what happened and why. I also got my medical records so I could read about my time in the hospital.

As an ICU survivor, these are the reasons why I believe the Johns Hopkins idea of keeping an ICU diary would have benefited me greatly. I still have so many questions and not many answers, for some of that time in my life.