Tag: life

The ups and downs

Mostly I try and write about all the positive stuff that’s been happening in my recovery and life. Sometimes however the tides go against me. In those periods I don’t have the energy too write about it nor do I want too look like I am complaining in any way shape or form.

But as with everything on the good ol’ interwebz painting a positive picture and not talk about the downsides is misleading and for others in the same situation and not much of a realistic picture. So I am going to try and write more about everything I my life related too my brain damage and the consequences.

In the past weeks I have done many fun things , all nicely planned and most of them went well. I let the planning slip and took less and less rest. And I didn’t listen too my girlfriend’s advice on taking it easy and going slow.

That in itself should have been enough of a warning. Just ignored it basically. Well that didn’t last long. Talking for example slowly went from bad to worse and concentration went downhill fast. So at the end last week I was stopped and my brain had had enough.

Which means everything gets hard. The basics of day to day life is suddenly more complex than complex algebra. It basically means getting out of bed is hard and getting off the couch is even harder. You simply need too take a lot of rest.

So a lot of rest later and some running again got me back up. Still it’s a bit fuzzy but all in all I am back, and I really need to get back to planning.

Dusseldorf citytrip

Another experiment in my never-ending quest in how far can I take it without failing miserably. A citytrip to lovely Dusseldorf. And as with a lot of citytrips over the years , another marathon. My third Dusseldorf marathon. Preparations were not ideal. I could not escape the flu and I hurt my left leg during a random walking down the stairs, resulting in a bruised left calf. Hopefully I recovered just enough.

Combined with the anticipation of a long travel and hustle and bustle of a big city I was pretty nervous. But we were prepared, planned a full day for both the journeys , Saturdays an empty day , so staying sharp en fit for the marathon should be doable.

the outward journey didn’t go with the fast ICE due to maintenance , so we went with the regular train services. First off to Venlo, then a simple stop at every stop you can find train towards Dusseldorf. The trip went well and we arrived at noon. Luckily the room was ready and we just took it easy the rest of the afternoon.

We went for a walk and a lunch in the city , got my racing number and just walked around a bit. We ended up passing a truly giant supermarket just around the corner from our hotel. Got some breakfast stuff once we found it and took a break at the hotel. Late in the afternoon we went to our favorite Burger restaurant in Medienhafen.

Saturday morning after breakfast we went to Niederkassel for some relaxing and to visit the Japanese garden. Unfortunately it openend hours later so we went on a walk around the neighborhood. With a bit of coffee and cake on the way. A very beautiful place too live indeed. Lot’s of green , parks and cool houses. And very close to the city centre. Happy few only I’m afraid. After the nice walk we went back towards the city, grabbing lunch at our favorite breakfast lunch spot. It’s still there !

Back to the hotel after getting some supplies from the mega Edeka. Taking the afternoon to catch some sleep and make sure I get enough rest. Even dinner at the hotel with fresh salads bread and deserts and getting a nice early rest. Tomorrow is marathon day !

Sunday morning, marathon d-day, nerves are definitely at their post. Early breakfast and preparation time. Main question of the day is , do I have enough endurance to get to the finish line without breaking down at some point. Only one way to find out.

We walk towards the start , which is at 9:00 in the morning, via Altstadt where the last remaining people are kindly swept out of the bars. There was a bit of a celebration in the city due to the promotion of Fortuna Dusseldorf on Saturday.

This being a relatively small marathon, about 4000 runners, there is plenty of space to do a nice warm up at the start and my girlfriend is able to be at the starting grid. I did a few test sprints to see how well my left leg felt. It felt good which added to the confidence a bit

About 10 minutes before the start I get in my starting position and it starts to rain a bit. Because of the course spectators can actually see the runners a lot , the course returns in a small part of town a couple of times so they can easily walk and be on time at different points in the race. Fun and good for moral.

Een 10 minuten voor de start zoek ik mijn startvak op en begint het wat te regenen. Mijn vriendin kan gezellig naast het vak staan en gaat even later naar het eerste punt, door de opzet waarbij je steeds weer terugkomt in een klein deel van de stad is het ideaal voor toeschouwers en kunnen ze de lopers vaak voorbij zien komen. Leuk en goed voor de moraal.

It’s there start , and the running can begin, all nerves went away immediately , which always happens when I start running. I am in a group with pacers who have 3:14 as a goal. I know that is a bit of a stretch for me but for now the pace is good and being in a group provides some heat. Which is great because of the increasing rain. My liquid intake isn’t great apparently because I have to take 4 restroom breaks along the way. First 2 times I got back with the group but I gave up on that because it took too much of my energy.

I am in a good pace and feel good, I take a drink at every stop and some gels and bananas. While running thru Niederkassel and Oberkassel the rain really starts pouring and I am soaked and a bit cold. Mainly on the return trip over the bridge. I still maintain a nice pace, After 30 K my legs het heavy and I can’t keep the pace. Which is fine by me and I decide not too force anything and stay in one piece. Just maintaining pace as much as possible which works great. In my mind I reached the giant 40 K sticker on the road pretty fast and the sun has started drying me and warming me up. Which is nice. The final stretch downhill towards the finish line and I am there. As usual my muscles immediately stop working after crossing the finish line, which is always a bit of a strange feeling. As is the time my watch tells me 3:21:11, en new course record. For me that is. I am extremely pleased , not one moment of pain or troubles along the way. Race seemed over before I knew it. Another milestone , in experience and running.

After the finish we find each other again and go for a curryworst lunch. Getting some food in is always great. Afterwards we walk back to the hotel and the sun is still shining. At the end of the afternoon we go to Medienhafen and get a drink and some sunshine. It’s hot by now. We walk back to the hotel via an unknown part of the city which has nice shops and restaurants. A new discovery for future visits.

Dinner is at a Thai restaurant near the hotel and an early bed , travel time tomorrow. Weather the next day is bad , well luckily travel time which went well as well and we are back home in the afternoon.

This citytrip went well and has given me a lot of insight in how to plan a trip. Running a great marathon was a very nice bonus. This learning experience has given me a lot of hope in getting on with our main hobby. Traveling.

2 years on

2 years on, seems like an eternity since my encephalitis, but today marks the two year anniversary of my hospital discharge. Could be a day sooner or later but that can’t dampen the spirit.

On this blog I have written about my recovery and the strange road I have been traveling ever since. A very short recap, 1 year of revalidation, a move too calmer surroundings, a new work experience place at Utrecht University , lot’s of learning and luckily lots of running. With the Amsterdam marathon as the cherry on the cake.

Has it all been happy days then ? Not quite , my short term memory regularly abandons me , and my operational speed isn’t very speedy anymore. Speech wise word juggling happens, as in random words in sentences, Yoda like sentences and just plain gibberish also occur. I can manage around this pretty well and every time I meet someone new I try and find an opening quickly explaining the reason behind possible errors in conversation.

That’s the practical side of things , it’s still very strange not to have a ‘real job’ , as in some sort of control over your career , future and possibilities. It makes me feel very dependent of other people and policies. Maybe control has always been an illusion in a way but at the moment I feel powerless sometimes. It’s also not a position I have chosen to be in, like when you take a year of for a trip around the world.

I have enough time behind recovering behind me that I understand that this is as good as it gets. I will have recovery periodes for every daily or not so daily activity in my life.

I sometimes compare it with pro sports, you have to keep training and take into account very parameter in order too stay sharp and fit. Slacking for a few days and forgetting about the balance between activity and recovery and it takes its toll.

Ik ben nu ver genoeg in mijn herstel om te beseffen dat het niet heel veel beter gaat worden dan dat het nu is.
Ik zal altijd rekening moeten houden met herstelperiodes voor allerlei dagelijkse en niet alledaagse zaken.

It kind of takes the spontaneity out of life a little. Just take a short unplanned weekend trip is out of the question. Getting something you forgot during shopping, not that smart. It forces you planning everything you don’t want to plan.

I am fully aware of the fact I’m very lucky and privileged in simply being alive and in the shape I am in.
I just need too accept the fact the old ways of doing things is no longer available.

It’s also taught me time is only there in an unknown quantity enjoy it while you can.

Running, recovery and the Amsterdam marathon

Running , recovery and life’s goals. During my revalidation period it quickly became apparent that exercise is good for your brain and helps a lot in recovering it. Well , no need to tell me twice. Dug out my running shoes and I thought I was starting out slowly.

As I’ve mentioned before this was way too much , way too soon. So after a while I done myself in and had to resort back too walking. Luckily after a while I was able too get back to running and it became the cornerstone in my recovery, rest and relaxation. Running clears my mind quite literally form the endless thinking, impulses and mental fatigue.

It’s simply putting one foot before the other. All went well until I picked up the pace. I fell pretty bad twice in one week. Shaving my knees and arms pretty bad. My shoes were worn a bit, new ones were in order. In the store the video pointed out a few problems , one my movement was not going forward enough.

I was holding myself back as if I wanted to go backwards, second problem was my left leg and feet lagged behind. I needed a better stride and better running techniques.

While very solid advice this was not as easy as it sounds , being a right handed guy and always avoiding using my left side I at first had not noticed there was a problem. Maybe another left-over from my encephalitis or just old habits dying hard. Whatever it was I needed better skills. My falling down skills very even worse.

Training in new running movement and getting my left side in check was a bit difficult. Step by step I improved and I didn’t fall flat on my face any more. Which was very important.
An added bonus was that my running required less energy then before , making training easier and more pleasurable. So I decided digging up a training plan for the marathon. I decided going for a simple and effective plan focused on making the necessary miles and exploring if I could manage the training load without overdoing myself.

My running improved vastly and I decided registering for a marathon if I could get trough the series of 30+ K sessions. And not just physically but also mentally. A glimpse on the calender showed the Amsterdam marathon was the best option. After the longer distances my confidence was big enough to take the plunge, I registered.

The week leading up to the marathon my nerves got going, mostly if I could cope mentally. Will I be able to handle all the noise and hustle and bustle surrounding the event ? What if I don’t know what to do any more and need to get out? Checked the route and picked a few points where I could give up and fairly easy return towards the start/finish. And all of sudden it Sunday came knocking.

Waking up I was very nervous , but after a nice breakfast and the walk towards the Olympic stadium my nerves settled a bit. Once I got inside I did a warm-up and headed for my starting position.
Fortunately it wasn’t too busy and there was plenty of room. From the start on the tempo was pretty spot on, first highlight the Vondelpark and the running under the Rijksmuseum. Until the 28 K it went very supple , at 30 K the temperature had risen and I became hot. At that point I didn’t pay any attention to what my watch was saying and the focus went towards simply keeping the tempo as best as I could.

At 35/36 cramps in my calves, after a few hundred metres it went away, again at 41 and I had to slow down a bit but I managed too keep running. The finish in the Olympic stadium is very cool. I just didn’t believe the race-timer. After the finish line I was just thrilled that I completed the distance.

My final time was an absolute surprise, 3:17:15, a personal best. Very special and just now , 2 days after it’s slowly sinking in, I have come a long way, sometimes not very aware of my situation but slowly learning and getting more aware.

You run into personal barriers and nobody really knows an definite solution to your problems and if and when it will get better. They give you structure and a framework , the rest is up to you , perseverance and patience is all you can do really.

Running is the one thing I feel I am in total control. And besides helping me get trough the week it’s also the one thing I can visibly improve in.

I never imagined running another marathon , yet I did it. I am a very happy person.

Why a crisis can be good for you, just don’t wait for one.

Why a crisis can be good for you, it’s a thought I had last week and it’s one that stuck. In my life I have had a few setbacks. At that time they seemed much more like a crisis to me.

Because I didn’t know or understand a real crisis. One where you can’t make a plan to get out of the situation fast and you have no real control or feeling of control over the majority of the circumstances. A health crisis is one that meets those criteria, and I can argue there is worse. And it make me think a lot about what I want to do with the rest of my life.

I always looked at time as an infinite factor, or didn’t think about it. I just rushed trough it, as I wrote before did as many things as possible without real and intense focus.
So what has this done for me other than a desire and need to focus. Well it made me think about my ‘career’, I have always worked in IT and did various tasks developing software which were fun and enjoyable without all the politics that go with it. It also never contributed to society as a whole.

Being confronted with my health and all the work that goes into recovery also made me appreciate people working in healthcare or other fields that contribute a bit more to society a lot more.
I never really thought about working in one of those fields, be it in healthcare, environmental work, research, education or some other more useful occupation. I have been talking about it a few years back with people about some of the ideas I had for a career switch involving a bit more social and a bit less career and money. Like a mid-life crisis of sorts feeling useless in general and wanting to be more active and beneficial for others. But hey, the next good job came along and the daily routine took over again. Just doing what you have always done feels comfortable. Change scares me, simple as that.

This time it really feels different, not just a general feeling but a real conviction I need to make this change. Not just because of the limitations I am currently experiencing, those can still improve, but a real gut feeling I need to add some value to the overall well being of society, even if I can only make a difference for a few people I would be happy.

I have always been fortunate enough with the way I grew up, the chances I got in life and the opportunities I had, which enabled me to get a good education, a nice job and a good overall understanding of how things work and how to go about setting your goals and make them happen. I utilized these skills for me, myself and I (An excellent De la Soul song as well, with a different message altogether).

I have experienced first hand the importance of good guidance and help in life , and especially when you go through a crisis in any form. Not just from the people around you but from experienced professionals as well. Without the help of those people I would have ended up pushing my limits and ultimately being exhausted and repeating my mistakes over and over without any insight how too manage this. It would be a road too nowhere. So in my journey towards a new job I will make it a priority that it helps people one way or the other.

I would like too encourage anyone to take a good look at themselves once in a while and figure out what really makes you happy and what it is you want to do with your time. If it’s not found in the things you are doing now start changing them now. Take small steps towards your new found goals and enjoy each step. Don’t wait until the next real crisis, as it can very easily be your last. It’s not easy, but it’s worth it.

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.

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.