Extreme fatigue is a common symptom of brain injury.
Before my injury, I survived on six hours of sleep per night, commuted 20 hours (or more) per week to my job in McLeod Lake and worked 7.5 hours per day, five days a week. And after a near 60-hour work week, I cleaned my house, did laundry, grocery shopping, cooking, maintained my yard, shoveled snow in the winter and had a social life.
In comparison to my life now, I used to be a superhero.
In a previous article, I mentioned the Spoon Theory. Where I access support at the Brain Injury Group (BIG), members are taught that when we are well rested, we start our day with 12 spoons in our possession. Making breakfast can take up two spoons, a phone conversation another two spoons, grocery shopping four spoons and so on. Survivors of brain injury can use up the 12 spoons very quickly because it takes our brain so much energy to focus on the tasks at hand. I have often used my 12 spoons by noon and I'm done for the day. I'm so exhausted I can't cook dinner or take my dogs for a walk.
Prior to the pandemic lockdown, I was sleeping 12 hours or more per day. I had anywhere from two to five appointments per week. Adding household errands and chores on top of that made me a very tired camper.
Since mid-March, I have not had any appointments. And I'm still sleeping 12 hours a day. I'm not doing much at all yet my sleep patterns have not changed. Logically, I should be sleeping less. So what gives?
Being a fairly new member to the brain injury world (one year and seven months), I've relied on the wisdom of my peers at BIG who have been survivors for much longer than me. Many survivors of brain injury have been diagnosed with Post Traumatic Stress Disorder (PTSD). I knew from some of my behaviours that my PTSD had been triggered by this pandemic, especially behaviours such as consuming huge amounts of sugar (mainly Jell-O) and increased anxiety
(difficulties catching a full breath, feeling like a big weight is on my chest).
A few of my friends from BIG told me a few other key pieces to my puzzle. My one friend explained the loss of usual routines knock us off course and our brains experience significant difficulties in reconciling these changes. This can lead to instant fatigue. In addition, the enormous burden we all carry about doing things right - safe distancing, hand washing, wiping everything down with disinfectant. Survivors of brain injury already have enough struggles with memory and having these additional tasks is overwhelming. We are frightened that we have no room for error and that one day we will mess up because we forgot to do something.
One of my other friends from BIG is in my mind a superstar. She is extremely regimented in maintaining a routine. She told me by structuring her day, every day, she has experienced increased energy. I definitely need to take a page out of her book.
Sadly, one of my other energy drainers has been racist mistreatment towards me during a few of my shopping trips. For a period of time I was scared to go out in public by myself. Being stubborn I decided to suck it up, go out on my own and face whatever racist demons crossed my path. One of my good friends Kellie informed me that it takes incredible energy for me to leave my house with this potential threat hanging over my head. In addition, I still carry the trauma of being assaulted by a male street person that resulted in my permanent brain injury.
This is how I operate. Bad things happen, I pull up my socks and keep going. I have no time for self pity or ever regard myself as a victim. I'm grateful for my friends who nurture, ground me and provide me reminders so that I'm not so hard on myself.
What would I do without them?
