What’s better ?

What’s better?, interesting question. While having less energy too spend on any given task it also has advantages. I used to do a lot of things simultaneously and as fast as possible , because I wanted to do a lot. I find a lot of stuff worth doing or exploring. And it’s a lot of fun. Learning new stuff. As a result I never really found the focus to concentrate on one particular thing. I always did it all, let’s take hobby’s as an example. I like too listen to music, make music , photography, writing and drawing. Mostly I only did one of these things for an hour a week at most.

This week I looked trough old files I found in a back-up, bits and pieces of sketches, unfinished music and maps of photo’s that never really went anywhere. As I am searching for new ways too train my brain and expanding my focus it needs to be a small task which can easily be cut into very small pieces. Well any of my hobby’s will do this just fine. I have some musical instruments I haven’t mastered yet, this can be nicely done in 10 minute intervals. Editing photo’s or reading about how it actually works can also be cut into little pieces. And writing as well.

By being limited I can now focus better on one thing at a time , and not allow my brain to go all over the place. Because it’s simply too exhausting. When working on stuff for just 10 minutes you need to define the task to strict boundaries. Which has helped creativity enormously. Less is more is really true , well for me now anyway.

What else has become better, time spend with friends and family. Which has always been very valuable, but now I appreciate it much more. This sounds very very cliché , I know. But it’s true. So everyone, you know who you are, Thanks for spending the time and being patient with me.

The time I can now spend on actually working on the recovery has been a better experience then I thought it would be, It’s given me insight in myself and I am now figuring out what’s important. One thing I learned is that everybody needs some time to figure stuff out, taking real rest and moments for reflection. So I encourage everyone to really do this. Not just for an hour but regularly and consistently over time, rest and think about life, it’s worth it.

Writing really helps

Writing seems to really help me sorting out my thoughts and get a clear view. Being unable to do basic problem solving I now write everything down. Mostly on paper.

I also work like this when writing my blogs. I make notes and then work on them over and over again. I can manage these writing sessions pretty well, and they are relaxing.
I am not yet very good at it, but it seems like a nice activity to expand. It can be done almost everywhere , on my own time and when I have enough energy to do it.

As this blog seems like a nice but bit ancient way to get my thoughts out there I will go forward and try to at least write something once a week. I don’t know If that’s a pace I can keep up but it’s worth a try. Only thing to figure out next is how to get anyone to read my ramblings.

Missing the action

Slowly adapting to my new self I am almost confident enough declaring the following , my energy management system works !
Yes it took a lot of time and painstaking tweaking but I now now what I can and can’t do on a given day.

The next step will be figuring out how to up the ante a bit. And the most important part of all , sticking with the slow progress mantra.

I have some experience and some perseverance when it comes to getting things done, for example running , following a nice training plan and feeling the progress almost every step. If I see a clearcut goal I can really get into most stuff and follow my plan. If I think it’s for a well defined and reachable goal.

My biggest asset has always been my ability to break my own boundaries, and thus by doing that almost all the time I reached the majority of my goals.

As I have mentioned before now it’s more important to manage the energy and reach goals without breaking any boundaries. Which for me is as hard as it gets. But I never fully realized this.

Working on stuff until late really made me feel alive, whether this was the smart thing to do , I found the grind very enjoyable.

It made me feel buzzed in some way, working hard and hitting targets is addictive, I now know it is. And after having a few brushes when pushing too hard I always found my way back to it. Even when a lot of the daily stuff is mundane and boring, I now tend to miss the action and dare I say the stress.

Funny how life works , last couple of years I tried to minimize the action and stressful parts of my work and going back to the fun stuff , but how ?

Well mother nature found a way, and in doing so made me realize that I needed too constantly pushing myself, turns out I never wanted too loose the action. I was somehow addicted too it. It’s also the thing I miss the most lately, I read an old ‘Bucket list’ when researching what to do next, and It was full of great stuff I wanted too do , and some I already started. When reading it I also realized that taking on one item off that list would be a massive undertaking, especially doing it in a way not to fall into my own trap of going non stop until it’s done.

I have never been the smartest kid in the room , but by methodically working on stuff and simply putting in the hours I managed most of the time. It has been my greatest asset. Pushing my limits and figuring the rest out as I go. I can no longer rely on this. By learning to do everything ‘slow’ it sucked the fun out of it a bit. The action so to say. It’s a bit terrifying knowing I will not be able to get that part back.

It’s also the automatic braking system I always needed, I more than ever need to pick my battles. It opens up a lot of creativity and possibilities. Figuring out how to apply this is the next step. Progress is here to stay.

Redesigning everyday life – Change

Change, it’s slowly but surely making it’s way into my everyday life, a change that I meet with resistance one time and embrace on other moments. I am now getting better results from my new planning system and also being a lot more aware of my energy. A challenge is too really relax and take it one day at the time. It’s mostly the day to day stuff that’s getting better. Less crazy dips when I should have been able to avoid those. The avoiding is going well, after being inside for almost a complete week due to a knee injury I found that staying inside actually helped in controlling the amount of incentives , consequently I kept avoiding going outside. Which I am now doing a again every day. I can’t stay inside all the time, so I am now picking that up again. It’s also important too maintain a social life and keep connecting with people. Also something I need to focus on more. The new way of distributing my energy should yield a better base line and more stability in the next 3 or 4 months. After this point I can gradually increase my activities.

With all day to day stuff going better I slowly need too look ahead. I am now trying to get permission to get a coach with a lot of experience in getting people with cognitive problems back to work, since I am now receiving payment via the government they have too approve this. So hopefully I will have a meeting within the next few weeks. So I can get this started.

So all in all many good things, in many small steps.

Redesigning everyday life – Carpe diem

The biggest question of all, how far will the recovery go. Nobody knows the answer, or can give you a range. I knew that from the beginning. What I didn’t know is what it meant for me and everybody around me.

I am slowly learning what it means. I have to give up my desire to control things, which is hard to do because I have always had some sort of plan and knew if I followed the plan , the goals would be reached. Most of the time anyway. You can’t win them all.

I’m trying to let go of my old ways of doing things, which was to work hard and work harder if it didn’t go as planned.
Fighting was my number one response if events didn’t go my way.

It was my first response in my recovery, I wanted to get back to normal as fast as possible. So I went back to work pretty quick and set out to up my activities almost on a weekly base. Not just the hours at work but also activities at home. I felt tired pretty quick but tried to fight it and push on, which normally worked upon till some degree. I kept this up until my contract at work ended and I felt just how much energy this had taken. And I suffered the inevitable set back most people experience in their recovery. I had tried to train my way out of it. But it’s not sport or even studying were you put in the time and effort and it mostly pays off in the end.

I was simply draining myself and burnt the energy I needed to recover. So after the dip I had to really rethink the approach and take taking my time to recover seriously. I talked about this period with the people who help me recover and they said it was time for me to accept my current situation and not trying to compare everything to the way I was and did things before. Most of the progress is with acceptance and trying to live one day at the time. So it was back to the drawing board, the result was a new system for energy management which allows me to go into more detail when planning my energy and some extra help in acceptance and the psychological side of things.

The new energy management system will show results after 3 to 4 months give or take. If the balance is solid I can them go and experiment further. the other part is the acceptance bit. Given the results of the Neuro psychological tests I can’t expect to fully recover to my former self in terms of concentration , analytical capabilities and information intake and memory. Most likely I can’t return to my old job. The funny thing is , I was already exploring other options before I got this. Off course the cards have been shuffled differently since then, and I never pulled the trigger on those options. It was easier and way faster to go back into my ‘old’ job then it is to make a real switch.

Now I have the opportunity to explore things I am really passionate about , and step outside of my comfort zone and habits, without going all practical about it all the time. I have never taken these kind of exercises seriously in the past, Amusing yes, but my practical side always took over and I just continued with life. In general there are always more excuses to stay on a course that feels safe and secure, or feel that way. So when I was told that it’s a good exercise to brainstorm what it is that makes me happy in life, my first reaction was a bit sceptical.

But then again what do I really have to loose ? All my prior attempts failed because of self imposed boundaries and limits. And without having a solid outlook I just as well go and think out of the box and give this a real shot. I always found people living by the day a bit naive, never planning ahead seemed like a path to certain failure. But now it’s really time for me to incorporate some of that ‘Carpe diem’ in my life and find out where it takes me.

Redesigning everyday life – Explorations

Brain recovery, how far can the brain recover ? According to most experts your brain can recover from serious damage but once the recovery stops that’s it. It is , however possible to recover up until your old level, which can take a few weeks months or years. In most cases people change, either in their ability to concentrate, memorize stuff, finding words etc, or have changes to their personalities. And now the fun part, most of the experts agree that in the first period recovery is at its quickest. After that it slows down. Sometimes people find themselves getting better years and years after. Which is good , very good.

I have gone past the half year mark and have had some nice improvements , reading is going better and I am getting used to all the tips and tricks that make my life easier to manage.

However, a few area’s are still a bit of a problem. And not so easy for people to understand and get their head around. In this article I will try to shed some light on this.

First off, conversations. If I am well rested and in a reasonable relaxed environment , I make sense most of the time and can actually interact on a normal level. It can happen when I’m talking my brain can’t always find the right words or my sentences get screwed up. Especially if there is a lot of noise or a lot of people talking nearby. This gets worse at the end of the day when my energy levels drop. I mix up words more often at the end of the day, so most of the time only my girlfriend notices. When I am asking for a spoon when I want her to pass me the remote control or something.

More troubling I can’t really remember what I have been talking about without taking notes. Making notes during casual conversation might be a bit odd. So I don’t do that. But then something happens along the lines of , remember you said this last time we spook. And I really can’t remember it. Most people close to me know this by now. But for people a bit further away this is a bit weird. As if I am not that interested in them or have been half ignoring them at the last meet.

Taping conversations is not really an option just yet, meetings of an official nature I am leaning towards it. But for a friendly conversation this is strange.
So I am figuring this out as I go. If I meet new people I try and casually slip in a few lines about my condition and how it can affect the conversation we have. This can clarify why I sometimes ask people to repeat what they just said twice (so I can remember better) or why it takes time for me to respond. Some people pick it up really casual ask one or two things about and continue. Other people react as if they just seen the grim reaper and the fun and casual conversation turns into me answering loads of questions about my condition. Which is normal I guess but not something you always want to do. Don’t get me wrong here , people being interested is not a bad thing and most are very compassionate and nice. But I don’t want it do dominate the conversation in any way. It’s just me trying to give some insight in why I have to apply these tactics in order to follow the conversation.

Secondly, I am extremely slow in finding solutions to any given problem, question or anything hard. It takes ages. I have to take notes, read them over. Ask questions later etc.
I a meeting this is difficult. I come up with stuff way after the momentum has passed, well after the meeting has ended basically.
This doesn’t mean my level of intelligence just dropped , my brain is essentially processing everything in slow motion. And my response is therefore also in slow motion.

This has been the greatest effect , because it takes so much time it also sucks energy. I can’t work on a hard project for hours on end on just food and coffee. I have to split everything up in small parts, which hopefully makes me a great planner ;). It’s about energy management rather than time management.

So after my first goal of getting my energy, focus and concentration on a higher level has been reached , these things will hopefully have improved a lot. Hopefully these examples will give some insight , and maybe I will tape our next encounter ;-).

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.