I had another rough night, two nights ago. Probably had something to do with my visit to the doctor, but then again, I haven’t been sleeping all that well, lately, anyway.
I was up at 2:00 a.m., drenched in sweat — I’m having a hard time moderating my body temperature, these days, as the seasons change. I’m either too warm or too cold, and when I get too hot, I sweat like crazy, when then soaks my pajamas and then I get chilled.
It’s just not good.
I tried listening to my guided imagery CD that’s meant to help me sleep, but it wasn’t working. I considered taking a shower to get all the sweat off me (sometimes the odor of my perspiration keeps me awake).. but then I opted for just changing my t-shirt and changing bedrooms.
The guest bedroom in the back of the house is quieter and smaller, and it feels sheltered. It doesn’t have much furniture in it; it’s pretty bare-bones, in fact. And it’s where we keep our extra stuff, like dirty laundry, shelves I have not taken out of the box and hung, yet, odd luggage that we can’t fit anywhere else, and a half-working multi-function fax-scanner-printer that bought the farm many years ago, but doubles as our outgoing fax machine (which we need surprisingly often). But the room has a nice feel to it, and it’s like a sanctuary to me when I’m not feeling well. It’s also where I take afternoon naps on the weekends, sometimes. It’s a nice room, the humble features notwithstanding.
I pulled a nice heavy quilt out of the closet, spread it across the bed, got my pillow, and climbed in. There’s something about making a “cave” out of my covers that makes me feel safer and more comfortable. I think the difference in the temperature in the room — my usual bedroom tends to be hot, and I’ve had the humidifier running to help avoid sinus issues — and the quiet in the back of the house really helped. Plus, it was a change of pace for me. I usually only sleep in the back guest room if I’m sick and I need to keep away from everyone.
I guess that wee hour of the morning was one of those times. Because I was sick. Tired and overtaxed and worried about my health and wondering if/when this TBI business is ever going to let up on me, and give me a break.
It could be that it never does. It could be, I have to keep dealing with the fallout — emotional, social, interpersonal, logistical, professional — all my live-long days. That probably will be the case. But on days like today, when I’m just so tired and I’m so fed up with having to navigate the world with different and/or diminished resources, I start to lose faith in my ability to cope.
I can cope, of course. I always have and I always will. I wouldn’t have gotten this far in life, with all those head traumas and all those tough experiences with family and friends and jobs and just daily living, if I didn’t have it in me to cope. I’ve been coping since I was seven years old, which means I’ve been at this for 36 years. But on days like today, when I’m tired and feeling like I’m falling behind in everything and I don’t know how I’m going to keep up, I start to lose faith.
Until I find something really great to perk me up. Like the fact that the speed of my broadband connection has improved exponentially, far beyond what I ever dreamed possible from my ISP, and I’m on good terms with my co-workers who also enjoy my company (when I’m absorbed in thoughts that perk me up, of course).
I think that if anything has spared me, in the years after my various TBI’s, it’s my continued sense of … well, adventure. And my tenacity. There’s a joke that with Alzheimer’s you get to meet new people every day, which (even by my fringe standards) is twisted and callous. But in a way, that’s how I feel about my own neurological issues. There is literally never a boring moment. If I approach each new situation with a sense of curiosity, even wonder, and I don’t get too hung up on the fact that I tend to screw up royally the first couple of times I try things… and I keep my sense of humor… and I just hang in there and keep trying, till I get it right… well, then, nothing is too terribly big for me to tackle (within reason, of course — let’s not go hog wild and get our hearts set on space travel or paying off the mortgages of every duped homeowner in America).
Some days, of course, I despair. I mean, it just really sucks when your brain doesn’t function the way you’d like it to — and everybody expects it to. It really sucks, when your own doctor backs away from you in alarm because they’ve discovered their assumptions about how well you can cope in the world are dead wrong. It sucks when your loved ones cannot deal with your temper, your memory issues, your mood swings, your difficulties remembering where to look for the note that’s supposed to tell you what to do today… And it really sucks, when you’re not sure who your friends really are…. and you don’t know if you have it in you to try to find out for sure.
But on the whole, I’m just so stubborn and hard-headed and too in love with life, to just give up and quit the game. Or even sit on the bench. I’m a viable, lively human being with a big heart and a lot to offer and a whole lot of life experience that others might find useful. Why should I live any less of a life than other people who haven’t gotten hit on the head and knocked around? Why should my injuries disqualify me form living my life to the fullest? They shouldn’t!
So long as I get enough sleep. Having enough rest is of paramount importance to me. If I haven’t slept, I can go off the deep end really quickly and start to make life miserable for everyone arund me. It’s the short temper, the extreme (someetimes violent) mood swings, the yelling, the tears, the inability to concentrate, the lapses in my memory over things that should be so simple… It’s all of it… it’s the almost childlike dependency that makes people wonder who I am, really… the reluctance to go out and be social, for fear that my tiredness will wear on me and make me edgy and gruff and put people off, and make me say things I regret and don’t really want to say. It’s the anxiety about any sort of social interaction — even with friends — that isolates me and ties me up in knots, since I don’t really have anyone I can just shoot the breeze with and bounce ideas off of. It’s the anxiety about people I know finding out about my tbi, when they had no idea before, and treating me differnetly, even though they’ve known me even in my most troubled times when my symptoms were really playing havoc with my head and behavior.
When I haven’t slept, I have trouble doing the most basic things — like remembering to zipper my fly. Like remembering to turn on my headlights when I pull out of the driveway. Like remembering a very important task I have been meaning to do. Like being able to understand people when I talk to them on the phone.
It seems like such a basic thing. How could sleep deprivation cause these issues? How could something so simple make my life so hard?
I’m not sure. But it does.
So, this weekend, with the support of my family (who are growing tired of dealing with a tired version of me), I will rest. Sleep. Take it easy. Read a good book. Write a little Draw a little. Just chill out. Take long hours to listen to my guided imagery CDs that I’ve been meaning to listen to. Spend some time doing some self-assessment and looking back over my past week to see what the pain points were. Tomorrow I’m taking time for myself, which is a rare, rare thing. And I’m going to catch up on my sleep, if it’s the last thing I do.
Nothing else matters, at this point. My priorities are clear.
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