If you’ve been wondering about my experience with TBI, you are in luck! If you aren’t curious about it, this would be your chance to close this blog and go read about something more interesting. Don’t worry, I wouldn’t blame you. I think the only thing less entertaining that living with a traumatic brain injury would be to read about someone else living with a traumatic brain injury. It’s pretty boring and lonely, but that is why instead of talking to myself, I’m going to write about it.
In an earlier post, I mentioned a few symptoms and likened it to “having a bad hangover without the fun of the night before”. Ironically, I can’t really drink any alcohol these days without feeling awful. Not that I was ever a huge drinker, but man there are times when I think a glass or two of wine would be amazing. Or maybe a margarita on a sunny patio…sigh. Every once in awhile if I decide to live on the edge, I’ll go for a half glass of white wine, but never red. One little sip of my husband’s cabernet last night reminded me of that.
Traumatic brain injury affects everyone differently. The point of this blog isn’t for sympathy, it is for education. There is an incredibly high rate of depression and suicide with TBI, and there are a lot of reasons for that.
So here it goes…
On my good days, I’ll get up and usually start the best part of my day, my run. Then it is breakfast, and time for my cognitive therapy homework which involves games, puzzles and word finding exercises. I like playing Set, or working on KenKens. It is only 10-15 minutes and then I’m ready for my first nap. After that it is lunch and a thrilling hour or so of coloring, listening to my audiobook, or gardening. I might work on the blog for my allowed 10 minutes or maybe do a little cleaning. Then it’s time for another nap. If I’m feeling ambitious I’ll take a shower and get out of my pajamas and maybe…gasp…make dinner. Yea, that is it. That is my day, and then I’m in bed before 9pm. You might be thinking “Wow that sounds amazing!” Sure, if you are working a ton, or raising kids, or just living a normal life, a lazy day now and then is great. Let me assure you, it isn’t great when it is not an option.
Not being able to easily transport myself is one of the hardest parts of this experience. Often I feel trapped in my house. I feel terrible in the car, and it isn’t just motion sickness, it is a feeling of disorientation and sensitivity to the noise, road vibration, and changing speeds. I’m not able to ride a bike, and those symptoms wouldn’t be any different on a bus. For years, I have had frequent migraines. That hasn’t changed, but my triggers are different now. Luckily, they respond to medication and I’m not left in constant pain. Because driving is a big trigger, and the fluorescent lighting and visual stimulation of most stores, makes me feel terrible, the whole concept of “running errands” no longer exists for me. Even on good days, a brief 10 minutes in the grocery store to grab milk is a BIG deal and leaves me wrecked. Coming home I struggle to focus long enough to put away the milk I just bought before going to bed.
I try to limit my plans to 1 event per day. That might be a doctor appointment, a haircut, or an evening with friends. But it is never all of those things in one day. About a month ago when my husband was out of town for work I asked a friend to take me to the store. I was going stir crazy in the house and needed to get out for a little bit. We went to a nearby store and I bought new running socks. We weren’t in there for very long, but the nausea was setting in as I paid, and I had to try really hard to not vomit in her new car. She lovingly informed me she was never taking me shopping again.
Maybe if you know someone else with a TBI you can have a little more understanding for why they never want to hang out anymore. Decision making is often very difficult. Driving or even riding in the car is hard. Crowded and noisy environments aren’t enjoyable. So call that friend and offer go for a walk, bring them dinner, take them somewhere quiet, or plan to just simply sit and keep them company. But don’t expect them to make the decision, and don’t expect them to come to you. It’s too hard. I’m so thankful for all the friends that have done all of these things for me. You guys are the best.