Can we talk about sleep? Google tells me that anywhere from 30-70% of people with traumatic brain injuries have sleep issues, and for stroke survivors like me the estimate is 50%. I definitely fall into that that 50%. Sleep has been my biggest issue win the last year for sure. In the last two weeks I have slept through the night in my own bed twice. And that seems pretty good. I journaled about sleep this morning and it ended up being bullet points that looked something like this:
Fuck. Me. I am so tired (ha ha) of trying to figure out my sleep.
I am tired of all the advice that well meaning people give me to try. And I am tired of it not working.
I am tired of not sleeping with my husband.
I am tied of doctors who don't who don't understand and make me feel more broken.
I am tired of my brain not getting the fucking message.
I hate that the anxiety and stress kicks in after supper as I realize bedtime is coming.
I realized yesterday how much of it might have to do with stress. Not the kind of stress like I have so much to do... but more like how much work and it is just exist for my poor brain. So in my living room I am okay, well except now as the light levels change and more specifically the angle of the light as the sun changes the angle at which it shines. So light comes in at a different angle and seems to reflect off all the things. For some reason it makes things difficult for me and I am trying to adjust. I did feel better when someone else with hemianopia said the same thing in our online support group this week. I digress... I go for walks to try and get some exercise, and if I stay on the pathways close to home, I am pretty okay. If I walk into town to run some errands and have to navigate cars and other people, it is much harder. I am always on alert. I am constantly thinking about my safety, now I am scanning and using my vision, looking out for hazards, cars, people... and my mind is going a hundred miles an hour. No just walking and letting go of the rest of the day. So I wonder if that state of hyper vigilance has something to do with it.
Is my body/brain so used to having to be constantly on guard and ready that I can't turn it off? So that every little sound wakes me? I married the world's loudest snorer. (I know that snoring can be dangerous and maybe he should go to a sleep clinic and that jazz, but he is a grown ass man and I can't make him do things he doesn't want to do. I just got him to get a family doctor after I got sick!) I already sleep with earplugs in. I used to sleep through it, prior to "the incident" and when we are on holidays I sleep okay with him. I am not sure if it is because he is not working and maybe less tired, or we are outside more, or if it because when I am with him and I feel less overwhelmed by the world. But even on the few occasions that he has worked night shifts or volunteered to sleep int he spare room, I wake. I sleep for 3 or 4 hours and wake up. For hours at a time.
I have good "sleep hygiene" to use the lingo. My phone is away from my bed, we don't have a t.v. in our room, I don't eat after 7... But I do know that watching t.v. in the evening makes it a bit worse. But it is a catch 22. It is the only time I get to spend with my husband (the one person I see), and he needs it shut down the thinking about work. So I can be lonely and maybe sleep better, or hang with the one person I see a day. Sometimes we listen to music together, or in the summer would go for a drive or a walk. But now that winter is on it's way, those things aren't as much of an option, or as motivating.
So I am at this point where I think right now I need to work on my attachments and expectations around sleep. That leaving my husband to sleep in the spare room is "bad". That when I have a bad night it is because I did something wrong, or that I need to be better at getting reading to sleep. To come to a point of acceptance of my brain the way it is, that I don't judge myself for my visual field cut, why do I feel this away about sleep? To not let it get to me when the doctor seems surprised that I am still experiencing tiredness after two years, when everyone I talk to (and the statistics) tell me that I am not alone. So I am holding space for myself to sit with this today. And likely tomorrow and the next day. I don't think this is going to be a quick fix for me.
Lastly, I want to talk about this: Many of you know me from my previous life working with kids with special needs. So many of our parents and families talked abut their child's sleep as a major issue. We gave them handouts and bedtime routine, and all the things they should be doing, to try and help. Here is the thing... differences in brain function, like I have, mean your brain works differently (duh). So for kids on the autism spectrum, cerebral palsy, FASD... they also have brain differences. All of the strategies in the world might not help. It might just be. Maybe their brain has trouble staying asleep. Perhaps empathy and understanding rather than strategies is needed. Because when you try all the strategies that people give you and are still awake at 2:00 am then you are tired AND a failure. Believe me that I understand that as helping professionals we want to provide solutions. But what if there isn't one? What if that just IS. How can you help someone be okay with that? There might be things we can't fix, anymore that I can make myself see the left field of view.
Once again it comes down to compassion. Be good to one another.
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