2013: the year of denial
I didn’t even realize something was missing. Sure I was tired all the time and would lay on the couch whenever possible, but I had been in an accident two weeks earlier. Surely my body still needed to heal and rest. Walking to the end of the street was as far as I could get, but that made sense, I hadn’t used my muscles for a week. A month later, well I was still tired. But after laying in a hospital bed for a week and slowly starting to eat again, it would take some time to regain my energy, wouldn’t it? I mean if you break your arm, you have to take it easy and are in a cast for six weeks. Surly having a haemorrhage in your head, would also take some time to heal?
Surprisingly you can fool yourself for quite a long time, I realize writing this. Instead of asking questions or looking for information, finding excuses as to why things would still be different, was way easier.
2014: the year of understanding
I think it was almost a year later that I finally realized that I wouldn’t get my energy a 100% back. Around that time I also started to realise the full impact of what it means to have a brain injury. Before that I still expected to return to my former self. I mean I already had career plans and I dutifully did the exercises and homework that the therapists gave me, so why wouldn’t I return to normal?
It turns out that denial is one of the most common phases that you have to get through, after your injury. Luckily my behaviour wasn’t altered and I’m still tremendously thankful for that. Mentally I also was very lucky, but the lack of energy did become an obvious problem.
Apparently my internal battery was damaged and would drain a whole lot faster than before. And I better had to learn how to adjust my day-to-day life, in order to be able to do the things I wanted to do. Compared to before, I needed to rethink everything. Trough trial and error I realized that the old ways were no longer a good -or wise- approach. I remember going to visit my colleagues and thinking that since the hospital was on the way, combining two appointments would be very time efficient. It turns out, that although travel wise that might have been smart, energy wise it was a horrible idea. I had to spend the following days in bed doing nothing to recharge my battery. I struggled with this talking about it made me realize I wasn’t alone. My friends and family also had difficultly understanding the new situation.
The spoon theory
Luckily you can find (almost) all the information on the web. I found an article that illustrated the difference between healthy people and people with less energy due to sickness or disability. The article “The Spoon Theory” was written by Christine Miserandino, who suffers from Lupus, an auto-immune disease. I highly recommend reading her article. In short it explains that the difference between healthy an being sick/disabled, is that you have to think and make conscious decisions about all things compared to healthy people. I used to start the day with energy to do whatever I wanted and had therefore unlimited possibilities for spending my time and energy. But that no longer is the case.
In the article, Christine explains the difference using spoons to illustrate energy. When you’re healthy you have an unlimited amount of spoons, but when you’re sick (or have a brain injury) you have a limited amount of spoons. Therefore, you have to consciously decide on how you choose to spend your limited amount of spoons (energy). Besides sleeping, all activities have a cost. Getting dressed might cost one spoon, going for a bike ride for thirty minutes three spoons and working an hour five spoons. When the spoons are gone, they are gone. If you really want to do something you could borrow some of tomorrow’s spoons, but that means that you have even less spoons the following day. Also you might wake up and realize you didn’t get your amount of spoons, because something you did the day before proved to be harder.
Now: living with a new reality
This theory illustrates my new reality. And I think it is the hardest thing for me to come to terms with. Slowing down and not going out with friends or going to a friend’s party, but think carefully. What have I planned for the coming days, what did I do yesterday, do I still have to cook or do chores around the house? Only after taking all of this into account, I make a decisions and more often than not, choose to stay at home. As the article illustrates it is the difference of simply doing things and to strategize all your activities. Adjusting to this new lifestyle, is probably one of the hardest thing to do.
Do you have to make conscious decisions, or do you remember having to strategize your day as a result of being sick. Do you have tips or tricks, let me know in the comments!