For the first several months after my TBI you couldn’t have paid me to stay awake. I was always sleeping – in between bouts of pain of course. However, I just could not seem to stay awake. I would think to myself, “Stay awake Caren”. Just couldn’t manage to do it, no matter how hard I tried.
I didn’t care where I was either. Sitting in the wheelchair, at a doctor appointment, during therapy, on the toilet, in the shower, trying to read, while eating, while drinking, while talking, typing on my computer, home or away I was constantly falling asleep.
Not only was I sleeping 12 hours or more a day I was also embarking on several “mini naps”. I attended 3 sleep studies in the first 18 months after the wreck. I eventually was diagnosed with Hypersomnia vs Narcolepsy. There was no history of Narcolepsy in my family or with me. Finally it was determined that this Hypersomnia was a result of my TBI. This was a fatigue so intense that simply waking up and having help getting dressed was enough activity to illicit another “nap”.
I would also sleep HARD. This often scared my family. By that, I mean that my family would try to wake me up for medication times, or for meals, or appointments. Sometimes they would call my name repeatedly, shake me, run a thumb up the bottom of my bare foot. Anything to get a response and I would soundly sleep through it all. Apparently, to hear them tell it. I slept like I was dead, not even a flinch. I lost the ability to hear alarms or get woken by one in the first 4 years. Once awake it would take a long time to get my head together, realize where I was, that I was okay, and what was going on in the moment. For the first couple of years I lost my ability to dream….or at least remember them. This was odd as I used to dream in living color before the wreck and remember ALL my dreams.
Medical appointments were agony. I was fatigued BEFORE I got there and getting out of the house took over an hour…on a good day. The level of fatigue felt AFTER the appointments was like a heavy weighted straw sucking the life out of me. I needed to sleep NOW or I knew I got grumpy fast. Often times followed by a wall of tears.
Keep in mind I still had numerous fractures as well for the first two years that went unhealed, so I was also in pain ALL THE TIME. I was not a happy camper. Trying to be positive took a lionshare of my energy as well. Add on to this multiple surgeries and recovery time just from that, and the clock on my recovery started all over again after each surgery.
Sometimes I would be talking to someone and it was daylight outside, I was propped up in my hospital bed at home and suddenly I would wake up, and it was dark outside. I was unaware I had even fallen asleep in the middle of a conversation and been asleep for hours. I would often feel confused, guilty for sleeping so much, and still exhausted.
From home I tried to keep up with emails, phone calls, communications with the schools, etc like I did before the wreck. Um, yeah…I failed miserably at these attempts. I would forget what I was doing, who I was talking to, what I was typing and it was a mess. I am amazed that most of all those same people still talk to me. I was so flighty.
Every emotional upheaval caused fatigue. I can tell you that there were a LOT of emotional experiences I was constantly wading through. I noticed I couldn’t read a book! This was upsetting as I used to be an AVID READER. I couldn’t do word searches. I kept trying, however it would make me puke. I could read information on the computer in small doses, often falling asleep while on it. I was in a world I did not recognize. Even the lights on the ceiling in the store or at the hospital made me feel fatigued. My eyes burned from the lights. Even at home the lights bothered me. I spent a lot of time with a neck pillow covering my eyes or my head covered or buried in a blanket in a low lit room. If the room was dark…even better. I couldn’t even listen to the TV in the first few months. It took almost a full year before I could watch a one hour television show without feeling overwhelmed. I remember there was just to much movement on the shows. There was too much to look at and it made me nauseous. So the family spent many a movie night with me sequestered to my hospital bed drinking up the dark quiet and solitude. I was also dealing with horrendous headaches, dizziness, and room spinning feeling. On top of that the room would slant by the end of the day. I always felt like everything was “crooked”.
I remember some frequent moments I would stare at words unable to read them. I have always loved words, their definitions, and studying language. My favorite board game USED TO BE Scrabble. I even won spelling bees when in school. So for me not to have a grasp of language and words has been the biggest loss for me. It would take me a while to figure out what the words were, what they meant. It helped to have my family read things to me, especially medical releases – where there were LOTS of words. I would hold a pen and not remember how to write. In fact, where I ALWAYS used to write in cursive before the wreck, I now had hen scratch printing. To this day I still print now. It’s bizarre. I will say it has improved quite a bit in the last 4.5 years though. I had trouble getting the words in my mind out of my mouth, while at the same time trouble finding the right word to describe what I was talking about. I did a LOT of substituting words that meant other things. I still do that, yet not nearly as much.
I have always been a perfectionist my whole life. I would say that this intensified after the wreck, and yet I was too fatigued to follow through on anything. This was continually frustrating. I was upset about forgetting so much. I would forget what I was saying right in the middle of saying it. I couldn’t track my thoughts and I kept making mistakes. I was introduced to writing everything down in a notebook from a speech therapist in NeuroRehab. This was and has been a lifesaver to me. The only issue thought that still kind of plays into a challenge is I forget I wrote something down. This is often comical now to me, though I did not used to handle it lightly at all. Sometimes still, I will go back and read what I wrote just to refresh my memory on things. I have gotten better about using the notebooks less and less. However, anytime I try to go without them completely it is generally self-sabatoging.
After a while I suddenly developed insomnia. What the heck. I was either a hypersomniac and sleeping all the time or not sleeping for a day or two because my mind would not rest. I would lay there with my eyes closed and nothing…that was more towards the second year though. Around this time I also started transitioning from the hospital bed back to the regular bed with my husband a little at a time. That was a pretty special piece in the recovery process for us both.
Trying to push through the ongoing fatigue, feeling of being drained, or having an anxiety flare would cause a certain guaranteed meltdown if I pushed myself to try and overcome those moments. Sometimes of epic proportions. I have gotten better about managing this though. I have learned that when my brain and my body is done, they are done NOW and I need to respect that. I have to plan way in advance and conserve energy, days in advance of an event, trip, or day of appointments. When it is a busy week, I spend a lot of days playing catch up on my energy. This often involves a lot of sleeping still, often coupled by crazy random muscle spasms.
My sleep has improved though in the last 5 years. I still have bouts of insomnia, but not nearly as much. My sleep has actually mostly normalized. I get an average of 3 -10 hours, with the most common being around 6 hours. Still naps here and there, though not sleeping 20 hours a day anymore.
I actually attribute a lot of that to having gotten prism glasses, vision therapy, and just a lot of time for my brain and body to heal up some and reroute itself. I have done a lot of brain games, a lot of research, and acquired care that has helped me get to the level I am at today; helps me continue to manage my pain most of the time, and I am now able to spend some bursts of quality time on some of the things that add value to my life.
I haven’t been able to combat the fatigue yet. However, I have learned quite a few coping mechanisms that help me be more active and involved in most of the things in my life now. I have a lot of strategies in place that I utilize every day. Some exciting developments as well. This past Summer and early Fall, I started being able to hear some of my alarms again. I cannot tell you how excited this made me. I don’t always hear them still, especially if I am super duper exhausted and pushed myself too far. However, I will take sometimes over not at all.
I have learned more and more as each day passes that time is a completely different animal than energy. Why is it that I don’t seem to be able to accomplish anything like I used to in a day, even though I have all this time given to me? What I did not have, and still struggle with, is having energy, especially energy related to my cognitive base. So you can have all the time in the world, if you have no energy to go with it…not much is getting done.
So I pace myself, plan, plan, plan and gently glide outside of my comfort zones to live up to my desire to help others in the best ways that I can, for as long as I can in a single day.
Then, after all is said and done, I haul myself up to my bedroom, collapse into a well deserved exhausted heap…..and sleep.