I think I could write a whole book about dealing with the limits of your abilities. About the search to what your body can handle and how to plan your days accordingly. For me, this remains one of the hardest things. But instead of a book, I’ve written this post. 🙂
Discovering your limits
Staying within your limits (or trying to) is something that applies, more or less, to everyone. Even when you’re really healthy, there are still limits to what you can do. If you run a marathon without training , you’ll hit your limit very quickly. The difficulty with a brain injury is that you suddenly have to learn that your limits aren’t as far as they used to be. Which is why you can easily overestimate your own abilities. When you used to be able to easily combine different appointments, or going past a number of stores, now you have to take your pick. Having one appointment or going to one store is more than enough.
What used to feel normal, suddenly becomes too much. Which results in having to continuously ask yourself how much energy you have left and how much you still can do.
Staying within your limits
Of course, the biggest challenge is to realize, on time, when you’re getting in the danger zone. The moment where your battery is near empty and you should be resting. With larger activities, like going out for dinner or a movie, this is reasonable easy. These things simply cost too much energy, so I avoid these kind of things. And if I really want to do things like this, I have to do it early in the day, wear my earplugs, take breaks, but also adjust my weekly schedule accordingly.
For me the difficulty lies in the smaller choices. Which unfortunately seem to occur daily. Like knowing (or feeling) when you have to take a break from work, or when you need to excuse yourself from family and friends to give your brain some breathing space. Or deciding if you can still take your bike or when the wiser choice would be to use public transportation. In this regard, it’s a pity that we don’t have a battery indicator of our body. How simple and easy would life be, if we could see in one glance whether or not we still can do something, or when we need to recharge.
A complicating factor is that my feelings influence my thinking (and vice versa). When I feel really passionate about something or have an adrenaline rush, I think I can go on, as I’m feeling fine. However, afterwards I’ll feel how I’m really doing and how far I’ve crossed my limits. Knowing where your limits are and trying to objectively feel how close you are, is something I still find very difficult.
Pushing your limits
I also want to stimulate my brain to make new connections. The concept of neuroplasticity gives me hope that I’ll be able to do more in the future. By taking small steps you can push your limits over time. Already I can do more compared to two years earlier. The question of course, is what a ‘small’ step entails and how much time you need to take for each step.
Going too fast or taking large steps and you’ll risk doing your brain more harm than good. Going too slow and you might not stimulate you brain cells enough. For me it feels like walking a tightrope over a ravine. I don’t want to fall and discover that my brain suddenly can do less, but I do want to reach the other side.
Reactions from others
These are mostly internal questions, but of course you also have to deal with other people. I think you can divide the questions you’ll get from others, roughly into two groups; questions out of incomprehension and questions out of concern.
From the corner of incomprehension you’ll get questions like “Why can’t you come?“, “Why are you leaving so early?” or “Aren’t you healed yet? “. Here it’s clear that they have no idea what a brain injury is, how it affects your entire life and that the consequences are different for everyone. People simply don’t realize that you can do far less and that you have to learn to live with this. These kinds of questions are obviously very frustrating. But fortunately, I almost never get these kind of questions from the people I value most.
However, I do get many questions out of concern. Questions like “Should you do that?” or “Don’t you rather / isn’t it wiser when …?“. I know they mean well, but I’m instantly feeling defensive. It feels like people doubt my abilities or capacity to make smart choices. I may not always know where my limits are, but I don’t want to use my brain injury as an excuse to stop doing or trying things. Energy for me is a scarce resource, so I’ve definitely thought about how I want to spend it.
I know people are only trying to help, but I would prefer it if they would ask a different question. Something like “How good of you to try, can I help you in anyway? ” Or “I understand you want to do that, do you have to leave other things now?” Conveyed like this, I’ll still understand that you think of me, but I’ll also feel that you respect my choice and my abilities.
For me, the challenge is how I respond to these kinds of questions. This is (very predictable) largely dependent of how much energy I still have. But also on my estimate of the willingness of others to really listen to me. For questions asked out of concern, I can at least refer to this blog post from now on. 🙂