I started this blog as a way to have a conversation about what life looks like and feels like for those of us whose lives have been reshaped by traumatic brain injury. It’s hard to describe what can’t be seen.
So, here’s a snapshot of an ordinary day. Hopefully, my observations provide images and feelings to an invisible injury with no terminus.
I don’t have trouble falling asleep and I wake up after 7 or 8 hours of sleep. It’s really more accurate to say I am no longer asleep after 7 or 8 hours. I don’t really WAKE up. I often wish I could go right back to sleep again. I manage, though, to get up and start the day. For most of the 10 years that I’ve lived with TBI, I wake up tired and remain tired throughout the day.
I have been blessed with remarkable doctors who have for years tried to find ways to reduce what, for me, has been, debilitating fatigue. I re-started 6 months ago to use a CPAP machine. I tried a CPAP machine 2 or 3 years ago and found it awkward and difficult to use. When my second sleep study showed that my oxygen levels were dangerously low, I made a commitment to try again. The CPAP paraphernalia has been re-designed and is more comfortable. I use it every night. I often wake up alert and have energy that lasts until the late afternoon. A victory!
I always have a list near me with all of the things I need to do in a day. Typically, the list holds the mundane tasks of everyday life, grocery shopping, laundry, calls to make for an appointment or pay a bill. It sounds so simple,
Maybe after breakfast I go grocery shopping. I bring my list that I’ve checked and double-checked, hopeful that I don’t have to make another trip to a grocery store.
I try to go to a familiar store, with a layout that I know how to navigate. As soon as I enter the store, I’m confronted by sensory overload, fluorescent lights, music, signs of all kinds, and people moving and talking. I am soon overwhelmed by too much stimuli. I stop, take a few breathes and refocus on my list. I continue to systematically go up and down each aisle. After some minutes, I start to lose my focus. I pick up something not on my list, maybe forget something that was on my list, linger in front of the jams, strawberry, mixed fruit, organic fruit spread….so many choices, how many tomatoes to get, do I have onions…. should I get more dish soap. Fifteen minutes has turned in 45 by the time I’m in line.
Maybe I have to return a phone call about the cable bill or make a dental appointment. I try to clump my phone call “errands” together, reducing the stress of making phone calls every day. Each call requires energy. I try to have all of the information I’ll need in front of me before I make the call. The phone means listening carefully to the prompts. Press 1 for..press 2, 3,.4, what is your account number, what is your password? Please hold. By the time I am able to deal with the purpose of my call, I am frustrated and tired.
If I have evening plans, I’ll need to nap.
An evening event usually means I have a few hours before I run out of stamina. It also means making sure that I’m going somewhere without bright lights, loud music, or engaging in too many conversations.
Simple isn’t simple anymore.
It is, of course, easier when I’m not judging myself for being slower in doing tasks than I used to be, for being tired, or feeling that I need to explain to others, again, why lights and noise are problematic for me. Judging and guilting take a toll. I’m learning how to pace my days, enjoy what’s around me and focus on what I do have, rather than what has been lost.
I continue to learn more ways to take care of myself and to take care of my brain.