On January 20, 2019 I hit my head in a ski accident. The helmet I was wearing saved my life. The resulting traumatic brain injury (TBI) has impacted every facet of my life. One of the most difficult parts of brain injuries is the isolation and feeling that the world does not understand you. A concussive generally loses the ability to effectively communicate and share thoughts and feelings. I have never blogged before (and have always disliked writing!), but in an effort to feel more understood, track my progress, and connect with other TBI survivors, here goes. There is so much to tell and share, over time I will piece together my journey.
A traumatic brain injury creates an energy crisis in the brain. Everything you do takes so much more energy than a normal person, leaving you depleted on a daily basis. A regular person might have 12 or so good hours in a day where they can get things accomplished; a person with a TBI has on average 4 hours. A good example of this is the life I am living today, at this very moment.
Today I woke up at 10 am. Yes 10 am, I still often sleep 12 hours per night. After showering and having breakfast, I had a check in call with a doctor at 11 am. I then took my dog Garfunkel to the park to play in the snow. At the park, I ran around a little bit and conversed with a couple other dog parents. I then returned home and went to my desk to attempt some work. I was so completely exhausted I had to get back in bed. I rested for about an hour, and then got up to get something to eat. Back to the computer I decided, try again. Again before I was able to do anything besides browse the windows I had open, my stomach felt really sick and I was too tired to do anything. Back to bed again.
It is now around 2 pm. I have been up for 4 hours, attempted work twice, and rested for one of those four hours.
Today would be considered worst than most days these days, but not atypical by any means.I am so fatigued today because I had a physical therapy appointment yesterday and spent a lot of time on the phone yesterday, as it was my 36th birthday. And no there was no crazy partying, a half of glass of wine at home and in bed around 10 pm. Events from one day carry over into fatigue, nausea, and headaches the following day, days, or weeks. There is no fighting through these symptoms; if you attempt to do so, the “hangover” will last more hours or days.
I have improved dramatically over the last two years, but still have a long way to go. Clearly. I am shell of my former self, but sometimes recently I have felt glimpses of the “old Emily.” So let’s start by cheering the wins. I can drive a car, could not in 2019. I can watch a movie or tv show without getting sick. I can be more physically active, going on easy hikes and walks. I can read again. I can work 10-15 hours per week.
I have many goals that most people take for granted.. enjoy dinner at a restaurant without feeling overly stimulated and needing to get out of there, attend a concert, go to a movie, travel on the weekend and be able to do activities and keep up. For TBI survivors, Covid has been a bit of a respite, the rest of the world has to live at our pace. We don’t feel pressure to keep up. But the scary part is, I have not attempted so many things in a long time so I don’t know if I have regressed or improved relative to those activities. My concussion feels like a waiting game. Only time will tell what I am able to do and when.
To all of you survivors and caregivers out there, you are not alone. I owe the biggest thank you to my boyfriend M who has lived this nightmare with me, being my chauffeur, my chef, my errand runner, and most of all the most loving, snuggly supportive partner I could have ever hoped for. I love you with all of my heart.
As my new favorite doctor recently said at the end of our call, “catch you later.”