Well, last few months have been eye opening. The post encephalitis effects are still very much present in my daily life. In this post I will try and shed some light on my experience this far and share some thoughts on recovery, the future and life in general.
After 6 months of recovery I must admit I underestimated the impact and consequences, I was focussed on a speedy recovery and aimed at getting back to work as fast as possible. While the team at the revalidation centre told me to focus on the little things first and take it slow. I just decided , maybe unconsciously, instead of doing baby steps simply fight it. Just as I did my whole life. A simple and trusted method. When a problem arises simply fight harder , work harder until it’s solved.
It’s not that I didn’t notice a difference, reading became a lot harder and still is hard. And my ability to solve problems and analyse problems and situations in every day life has had a blow since the encephalitis happened. What I didn’t realize is that it had a hold on everything else as well. For example, if I went to a meeting with a doctor, I couldn’t really remember what he had said and certainly couldn’t comprehend what that meant for me. Which is not so bad when being in a trusted environment like the revalidation centre but very bad if it’s about big decisions like the amount of time you spent at work.
Overtime , and maybe a little late, it started to sink in. And I started applying the techniques I was handed by the revalidation experts. The most important thing I learned is to manage your energy instead of your time. My former self would cram as much as possible in 24 hours. By planning ‘efficient’ , smart and all the other time management tools that are out there. This proved to be my biggest personal pitfall. I read the documents provided , did the exercises once or applied them for a week or two. After that I simply stopped and tried to do everything the way I was used to.
This led to a nice spiral downward. And I was convinced everything was going better. After a while I was getting more tired after being at work and travelling and couldn’t focus any more.
Sleeping it off would help temporarily and I tried again. Failed, slept , tried again. Recovery became battle , with me trying to beat me.
At one point my girlfriend, family and the people at the centre noticed and manoeuvred me back to the principles. So I started applying the proceedings, processes and tricks they explained.
Well that is hard, very hard. Not that these are theoretically hard. Not at all. Things like , plan your week and days before they start. What kind of activities are there, which of these activities will cost you the most energy (not time!). Slowly I started to realize I needed these structures not to get overly tired at the end of a day week or even an activity.
I had done these things before, but didn’t stuck with it, thinking I could do without after a few good days or weeks. Lucky for me I did keep lists in the beginning of all the things I did and how much energy they cost me. So I now plan rest before an energy sucking activity like travelling, especially during rush hour. figuring out lesser busy times and keeping that schedule. Or making sure that I don’t meet people in too crowded places so I can focus better. Avoid busy times in public spaces. Don’t plan strenuous activities two days in a row. And rest or do activities to relax beforehand.
And that’s just planning. Nowadays when I have an important meeting, my girlfriend comes with me to make sure I don’t get overrun with info, and to make sure I don’t make decisions on the spot.
I have to have at least a couple of days to think things over and get an idea. She is a real life saver and helps me with everything.
I also make lists , which provide me with all the things I need to take with me, tasks I need to do. And I am wearing a watch again, and have a nice old school (yes paper) agenda.
Last month my contract at work was not prolonged and I now have to find another place to work at my recovery. Which is a bit unfortunate, but hopefully brings new opportunities.
It also released me from my inner pressure to perform at my best (whatever that may be) and gets me to focus on recovery instead of trying to get back into full swing asap.
It also brings an uncertain time as I now have to explain everything all over again to someone who is going to asses my situation all over. Hopefully it will be someone with a bit of knowledge on the matter.
Next week will bring a few results as well as I have done a combination of tests to see which skills I still posses and in which areas there are problems. A neuro psychological set of tests which looks like a set of easy tasks but proved to be very hard. Hopefully it will bring some much needed insight in the problems I have with taking in information , processing it and reacting to it.
One big advantage I had, I was en a fairly good condition when it happened and didn’t suffer from any physical problems. So I can still run, which helps me a great deal in relaxing and letting go.
Last week I had a few days of real rest, not having to go into work and travelling twice 3 days a week made me feel how tired I was, I also for the first time realized that my old self is no more. Really realizing what the experts had already told me and I mostly ignored, that there are no guarantees you will fully recover, and you really have to take baby steps.
I have formulated 4 goals to work on in the next 6 months. Focussing on recovery and instilling all the procedures , tools and tricks that help me in daily life. Step by step.