I’ve written before about the invisible nature of a brain injury and the difficulties it can bring. If people don’t see anything different about you, you’ll get treated just like everybody else. You have to learn to speak up for yourself. Every day is filled with choices on whether or not you’ll ask for a little help. To ask for a small break, for people to repeat themselves, if the music can be turned down or if the lights can be dimmed.
It also means that bumping into old acquaintances will very often lead to the dreaded “you look fine” comment, followed up with something along the lines of “so are you back on your feet”. After all, people don’t see anything different about you and mostly don’t understand what it means to have a brain injury. Which in turn leads to an internal debate on whether or not you’ll explain and educate or you just nod along and save your energy.
But the interactions with other people is not the topic of this week’s post. Cause, ironically, I myself also struggle with this invisible nature. When I look into the mirror, I don’t see my disability. And after I’ve had a couple of good days or accomplished something new, I’ll start to doubt whether or not I still have a brain injury.
What happened this week
Right, I have no idea if this sounds logical at all or if people can relate. But I will give an example of what happened this past week.
This week I had an afternoon meeting at work. Which happens quite often, so I knew I could attend and interact. However, in order to get there I had to cycle further than I normally do. Also in this meeting I had to give a presentation, make notes and answer questions. So I was feeling slightly apprehensive in the preceding days.
The good
The day itself went really well. Other than the rain, the cycling went well. I hadn’t overlooked other road users or objects along the way. My mind stayed sharp, so I could answer all the questions and maintain my attention. And I even was clever enough to take a nap when I got home again. When I woke late in the afternoon, I realized that I had pushed my limits!
Even more important, I realized that I was feeling fine. And I got more enthusiastic; If I could do all of this in one day, then I could do much more during the week. I’ve been living way too limited and careful. I could do so much more! And, dare I say it? Maybe my lost connections had finally been restored. Maybe all the sleeping and balancing of activities had given the time necessary to heal my injury. Maybe I could even be the old me again?!
Ah yes, such unbridled enthusiasm and optimism. In all honesty I will admit, that I have these thoughts a couple of times a year. :)
The bad
But we all know, what goes up must come down. The downward spiral didn’t even wait for the next day. During the night I already felt the tell-tale signals. An increasing headache and a mind going in circles could only mean one thing: I wasn’t healed. I still had my brain injury. Being high on adrenaline and wanting to prove myself worked for a day, but I had to pay a price.
The following day the headache persisted and I couldn’t keep my attention or stay alert. The minutes slowly ticked by and getting out of bed took quite a few tries. The next couple of days I was still in recovery mode. I was sleeping a lot and eating a lot of sugary things. Does anyone else also notice the need to eat more sugar to re-power the brain?
Familiar mistake
Afterwards, I’m annoyed with myself. Annoyed that I still get this instant rush of thinking that I’ve healed. Rationally speaking, I know that an instant-miraculous healing is next to impossible. But still my mind straight-away goes to this option. Particularly if I haven’t had a bad day in a while. Would you call that hope, stupidity or ignorance? For me, the jury is still out on that one.
Perhaps this relates to the whole accepting thing again. I don’t know. Anyway, I acknowledge that I –still– have a brain injury and I accept that it will influence all my actions today. As for the future, well who knows. Since there isn’t a lot known on the long-term effects, I’ll remain hopeful.
For the short term I hopefully can deal with my limitations in a responsible manner, sleeping a lot and trying not to push myself too hard. When I’m having a day of being convinced that I’m healed. Cause let’s be honest, this seems to be my conditioned response so I’ll probably think this again in a couple of months. I’ll try to look at the positive side. I can do more if I have to and apparently I’m a very hopeful person. 🙂
How about you? Is this recognizable? Do you have certain times when you doubt you injury? Or has ‘enough’ time passed and your mind no longer goes for this option?
Thank you for the kind words. Don’t give me too much credit though I only learned this by doing it hundreds of times that I finally got sick of it :).
Doesn’t it feel good to feel like you are 100% back to normal? It does for me. You deserve to feel that. I do, too. I love the flow and rush of a good hard working day. The penalty recovery days that follow it may be one day or ten days range from horrible to just a little horrible. I feel like it is worth it for emergency type situations because otherwise it will destroy my life. That said, yes I also forget about my recovery, get excited, have a great day, totally over do it and suffer. That is normal. You are normal. We are normal. It took me a long time to get down to over-doing it only about once every three months. Now I’ve been better than ever, only dealing with emergency type situations over-doing and that is about it. Giving myself this space has had a surprising result: it have given room for me to focus on other aspects of recovery.
Thanks for your insight! The funny thing is that I was convinced that most people wouldn’t make this mistake. But I discovered that, also in this we are not alone 🙂 And yes, I love feeling like the old me again.
Well done for taking such good care of yourself, that inspires me to try and do better!
In the past three years I’ve eaten more refined sugar than in all of the years before it. Usually it has turned an impossible and horrible situation into at least a possible and somewhat less horrible situation. The brain has no energy reserves so it needs sugar. It also needs neurotransmitters. TBI people have less neurotransmitters so we need to amp up our diet to get some back. Recovery also helps bring them back. Sugar is the easiest one to address unpleasant symptoms quickly and easily.