Wishing for instructions on the new me

An increasingly frustrating trait of this new me is the never-ending uncertainty. Uncertainty over what you can do on a day, over how much of a challenge is helpful and if whatever you’re feeling is the result of brain injury or not.

Where is the limit

Knowing (in advance) when something is too much, is something I struggle with a lot. If I plan all my activities wisely, chances are that the next day will be okay as well. But the thing is that after a couple of weeks of careful planning, the strictness of this planned living starts to chafe. Especially when I hear what my friends were doing over the weekends or if I read about a new movie or exhibition that I would like to see. At times like these, I get really frustrated and heavyhearted. I even envy my friends, which is stupid as I like my friends to be happy.

The lovely combination of frustration, sadness and a body that gives up, means I’m having a bad day. These are the times that I wholeheartedly (yes, all aspect of the heart get addressed ;)) wish for just one day of being the old me. Of being able to do everything without worrying about stimuli, energy or finding the right words. *Takes a deep breath, and hums ‘let it go‘.* I confess that as I’m writing this, I’m having a successive bad day. So I’m waiting for my positive side to come back online. I’ll promise a cute animal picture at the end, to make you all happy again 🙂.

When is too much really too much

Other than finding a magical lamp, I have my hope vested on neuroplasticity. Neuroplasticity is the capacity of your brain to change and adapt. Meaning that connections between nerve cells can be rebuild as a result of the interactions that you have with your environment. Which is very hopeful! Naturally this process takes time and of course you have to avoid overtaxing your brain. When does challenging you brain turns into damaging your brain? Good question. I don’t know. I would love some clear instructions or a roadmap. The “listen to your body” advice only results in more questions.

Is it my brain injury or not

It almost feels like a quiz. The “do I feel A because of something brain injury related, or because of B” quiz. But instead of a prize the wrong answer means spending more days in bed. I’m therefore constantly second guessing myself:

  • Do I have a headache because I’m overstimulated or is it ‘just’ a headache?
  • Am I dizzy because I my brain is getting tired, or did I get up too fast,
  • Did I sleep badly because my brain is even too tired to sleep, or is it because I’m excited about something?

Whenever I feel something that is caused by my brain injury I need to take it more slowly. But I don’t want to cancel an appointment because I have a normal headache or just slept badly. And behold the vicious circle of questions and uncertainty.

Instructions wanted

I’m therefore –wishfully- hoping for instructions on the new me or a ton of new connections in my brain. Luckily I can ignore all of this on most days and just go along with it. But on some days, particularly  bad days, reality sets in. The reality that whatever may be in the future, in the now I have a disability. One that affects everything and that I have to deal with. On days like this I like to retreat from the world, watch a sad movie to cry over and eat a ton of chocolate. As for today,  I’m done with the uncertainty and the frustration so I’ll go to bed early. Hopefully tomorrow will be a good day again and who knows, maybe I find that magical lamp.

You’ve made it to the end! And thus your reward, a cute animal picture


Do you also feel like this on the more difficult days? What do you do when you have a bad day?


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