Tag: encephalitis

Redesigning everyday life

Last few weeks I have been taking some more rest and time out to reflect on my progress so far. It’s been a steep learning curve and I am now up to a point where I almost know how much energy I have on any given day. I am now working on a system to score the amount of energy of each individual activity in a way such that I can compare and measure my flow of energy.

Until now I was giving out colours , red for an energy consuming task, green for an energy giving task and yellow for neutral. At the end of the day I also scored the overall day on a scale of 1 to 10.

While this was fine it didn’t help me as much as I wanted, especially when planning ahead. While thinking about this , I set on designing a system that helps me plan my activities more accurately and thus keep the heavy dips in energy at bay. So my first idea was to come up with some kind of system to score my activities and my daily available energy amount.

I discussed my idea with my therapist and she had a system which they don’t use that often because it’s normally a bit to hard for people to understand. But it has exactly what I need , a scientific based scoring method to score your activities. It also has a tool to calculate your base daily energy.

The goal for me is now to start and measure the activities and score my days. Once I have that sorted I will be able to manage my energy in a way that the strange dips in energy don’t occur as much any more.

For me this is a great step in redesigning my life in such a way I feel more in control about it. It also opens a lot opportunities to develop this further. Since it’s more accurate than just handing out colours it has a lot of potential for analysing my day to day and week to week planning.

I am very enthusiastic about this new method and hopefully I can report some good progress over the next few weeks and months.

Plan A or B

It’s been a few weeks since the post on the test results and in the meantime I have been spending some time on digesting everything, still a lot of questions need to be answered which I will hopefully get to in the next few weeks.

The recovery is now focussed on getting my concentration better when doing mentally intensive tasks. I have to cut up a task in tiny 10 minute pieces and take 10 minute brakes between them and do this for 1 hour. I then have to write all I experience during and after this hour. Also I have to grade my fatigue and general well being beforehand. Did I sleep well, what did I do the day before? That sort of thing. This is important to get a feel of how I perform and feel during a period of intensive activity.

I must admit last few weeks haven’t been easy , I had a bit of a setback after the ‘pressure’ of work went away , it’s not that they pushed me at work it’s just the fact that you want to perform at the best of your abilities. That being out of the way it became apparent how much energy this took away. After a week or so it started too creep in, being tired more often. Feeling fuzzy and unable to think properly. The people at the recovery centre told me this is normal when people go at it with full force, and thus having a few setbacks during the process. Learning to deal with these episodes is the important part.

One important factor which I always forget is to relax and let go , not constantly trying to figure out ways to improve myself and try to work on it all the time, be it consciously or subconsciously. Working harder isn’t the solution , relaxing more is. Which is an adjustment for me at the moment, but one I need to make.

They also pointed out to me I just started to really process what it means and what has actually happened in the past 7 months or so. After this stage I will have more room to accept it and then move forward again. All contributing to my recovery. So after sprinting in the beginning I am back to basics, simply walking.

It’s really strange how this affects your life , impacting almost everything you do on a day to day basis. Ignoring tell-tale signs of fatigue and pushing on is not the way to go. This also means being flexible enough to throw your ‘plan A’ out of the window and having a ‘plan B’ ready just in case. Which I now try to do when I plan my weeks. So if on any given day in the week I will be too tired for an activity I will have a backup activity in place, thus reducing stress from the pressure you put on yourself wanting to finish something.

Like Hannibal did in the old days, so every day can be concluded with ” I love it , when a plan comes together ” .

Results Neuro-Psychological tests

Yesterday I got the test result from the neuro pshycological examination. Which wasn’t all that good. My ability to remember, process and react to information has been sharply reduced.
This is the short version of what has come out of these tests. I will receive the full report later on and reflect on it some more then.

What does this mean ? It mostly confirms what I already knew, I am very slow with all tasks that require fast processing and reacting. And it takes a lot of energy. You’re just hoping it would be a bit better. The changes of a full recovery are somewhat diminished now. Or it will take longer I am not sure about that part as of yet. It was a lot of information to take in at once.
The Psychologist said this in the beginning and we can come back as often as we want if we have questions or just want to talk about it. The people at the revalidation centre are all very nice, professional and knowledgeable people and give you all the time and space which is great.

How does it affect me ? Well I need some time too digest this, It’s very good to have a base camp of sorts and being able to climb the mountain with a better route. Up until now I didn’t have a measured set of problem areas, rather I was just experiencing them. This is a good thing as we can now focus on these areas and try and improve them. It had been easier to further recover if the results were better. I have too start and taking even more care of planning my energy, cutting up activities in smaller tasks and make sure I prepare more. In retrospect I was chewing off bigger chunks of cookie than I should have. Shifting the gears back.

One important thing is that I keep exercising, running is great for the brain and being in a good condition helps your overall energy level and ability to cope with this. For now I am off for a run !

Recovery, progress and life in general

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.

Running and recovery

Since my encephalitis I have been suffering from concentration problems, analytical and problem solving issues, among other things. My recovery has gone fairly steadily upwards in the beginning but now is stalling a bit. One thing that is helping me a lot is exercising. Especially running. It helps me regaining my energy and makes me feel very happy. As my Paris marathon got cancelled I have now selected a new Marathon as a nice goal to work towards. It’s not going to be an attempt on my PR, the aim is to get across the finish line in one piece.

My recovery experts told me I have to select a goal to work towards and that there should be no pressure. So this is what I selected. I will keep a log of my training activity and share my thoughts on how it’s affecting me in general and towards the recovery.