Experiments , traveling by plane

Last month I did another experiment if you like, on how far I can go travel wise. It had been time for a good old fashioned holiday for some time. After successful small trips and lessons learned it was decided , flying with destination Tenerife, Canary Islands.

The B&B and the small town we stayed in were both familiar from previous visits , so the adjustment period should be minimal. Normally this was just the start of the trip or the end right after or before flying in or out. Now we would stay the week and see how things unfold.

The weeks before I was very nervous and anxious about the whole enterprise. What if I was forced too stay in bed the whole week. Things just didn’t sit well with me. Went anyway.

We booked a hotel near the Airport to cut the traveling in little bites so I could rest a bit more. Early morning flight so we took a cab to the airport, dropped our luggage and took our time. After boarding we had the furthest possible runway , the first few hours went pretty well, in the last hour my mind couldn’t keep up and I could not free myself out of the noise, movement and pressure.

Luckily we landed and the sun was shining, took a taxi towards the B&B and our room was almost ready. My initial expectation was that this was a crash moment. Luckily my afternoon sleeping breaks covered the fatigue and mental problems pretty well. So we enjoyed the village , food and sun and relaxed.

The first half of the week the afternoon naps proved too be sufficient enough , added we didn’t do much besides them anyway and all went well, the second half of the week sleeping wasn’t enough anymore. So the crash moment came later then expected.

In the second half we enjoyed a public transport trip to the capital of Tenerife and with a final meal at our favorite restaurant it was time for the flight home.

It was very good to be out of the country and having a ‘real’ holiday. Simply being abroad just adds to the overall holiday feeling.

It was a mixed bag in terms of my condition, before the trip I anticipated the first half to be a problem, which turned out to be the second half, and compared too out previous holiday’s we didn’t do a lot. It’s an adjustment I need to get my head around. One week of not doing much and just enjoying food sun and relaxation I can manage but after that I would like too see more of the place I am visiting.

After coming home I had troubles I finding my rhythm again , being tired and not committing enough time to rest. All in all a lot of lessons learned and perhaps I’ll have another go in the future. Never stop trying, and exploring , as they say at a famous outdoor brand.

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.

How running saved my life.

How Running saved my life, and still does. As most of you know by now in the beginning of 2016 I suffered an encephalitis. Which I survived because of my physical condition and the quick response by my girlfriend and parents. But without my condition even that swift response probably wouldn’t have been swift enough.

After my return from hospital my main concern was keeping my newly acquired job, which I enjoyed a lot. In the back of my head I knew it was too big a strain on my energy and it wasn’t the best thing to do but I went full steam ahead. Jobs are important and I wasn’t giving up. At the revalidation centre it was noticed I was way too tired but from my own perspective I already was taking it way to easy.

Anyway at the end of June my contract ended and I finally had to let go. Resulting in lots of time in bed and on the couch sleeping and resting. This was brick wall I had slammed into.
Physically and mentally this is very hard. After my contract ended I could really put my focus on my revalidation. Only now I understood what the phrase “taking it really easy, one small step at a time” meant for me.

Mentally it gets dark really fast,because all the fatigue is coming out at once , your mind tends to play games. It’s now really up to you to find the motivation to get up, make a plan and stick to it.
Work gives that routine automatically. It’s the start of a grieving period, all at once.

Basically the same mistake I made with one of my greatest hobby’s , running. It helped push the fatigue away for a few hours and made me think I could beat it. Once I had crashed I also had to put running aside for a while.
But In this case I had experience with over-training and runner fatigue. So out with the old plans and I started to make new ones. Targeted at just enjoying walking and some short and slow runs. It really helped me in countering the darkness in my mind and it helps in balancing those episodes out. The training schedule also helps creating a nice framework to organise your days around.

It keeps you physically and mentally healthy, so running is in a lot of ways still saving my life.

Redesigning everyday life – Start climbing

Last week I got permission to start a reintegration project with a foundation that specializes in people with brain damage and getting them back to work, or other meaningful social activity.
My work with the revalidation centre is almost done , I can manage my day to day life pretty well without going into the red. It still takes a lot of careful consideration and planning. But for now it’s more than enough to manage daily things. Next step will be getting back to work, with specialized help, which is paramount. At the recovery centre they do not have this kind of expertise as their focus is on the day to day.

So it was important to get the approval of the government body that issues my social benefits as they need to pay for it. In the old days, before the new law my employer would be responsible for my salary, recovery etc for 2,5 years. Since I just switched jobs and only had my second short term contract out of three maximum, with the new law the government takes this responsibility, and must make sure I get back to work instead of the employer as my contract ended.

the idea behind this law is to reduce the risk for employers and make sure more people get long term contracts. In real life a lot of people only get the 3 short term contracts and then get replaced, especially with generic work. The new law works it’s magic, but that’s another discussion altogether. Just some background to sketch my situation.

So with the government now has taken on the role of employer , I have to make sure everything I want to do and has to do with work related recovery has to be approved. So last week I had a meeting with my case manager and I told my story, and why I already wanted to get a head start with this new trajectory. The main issue is that all things recovery are going slow. And if I want to take the full effect I need to get started.

My case manager understood this perfectly and has worked it out very fast, so last Friday I got the OK and tomorrow I will have my first intake meeting, and hopefully get started quickly. I am looking forward to it as it’s a new step. I can now go forward again. Learning that all things take time was very valuable.

I am now back in the valley , it’s time to start climbing the mountain.

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 ;-).