Category: recovery

Brain damage , 5 years on.

It’s hard too believe it’s been 5 years , although 2020 has been a very strange year where time stood still and flew by all at the same time. 2021 marks the fifth anniversary of my brain injury , resulting in permanent brain damage. It is the fifth anniversary of the new me.

For people new to this blog and who missed my earlier writings on the subject , a small summary. 5 years ago I had an inflammatory reaction in my brain and after a recovery period this resulted in permanent damage.

What does that entail. Problems with my speech, as in putting strange words in sentences and incoherent speech. Short and long term memory problems. My brain doesn’t make the distinction between useful and unuseful information anymore so everything comes all at ones. Reading is sometimes an issue and movement as well.

After a period of recovery and trying to regain as much of the old me as possible I am now at the point of acceptance , knowing that improvements will probably not be there anymore.

Despite it being pretty obvious from the start that a full recovery wasn’t in the cards for me. I have always been trying to find a way to do just that. Consciously or subconsciously.

And where planning and resting are very important pieces of the puzzle and they work for most of the time there are periods that nothing works. Whatever you do you will be fully confronted with the brain damage. And the only thing left to do is take rest and ride it out. The good news is better days will come. There will be a moment when the system and rhythm will do their work again. I used to try and stretch the limits as soon as such a run was over I now just enjoy the benefits of having a good run.

That said it’s will always be hard not functioning on a ‘normal’ level , whatever that is, and admit that your wheels simply spin slower that the rest of the world. It has given me great inside in what I can and cannot do. How far I can push things and know when to stop. It’s not an exact science , believe me I have tried making it one, so planning and resting a certain way does not always give a steady result. It comes and goes in waves. The limit is not a clear line in the sand and sometimes I find myself on the other side of it. And it can be frustrating at times. You can go overboard and do to little and just do laps in your head.

I am very happy with all the things I still do, work that suits me and hobby’s I can practice. I fully realize how fortunate I am , as one doesn’t get a second run after such a run in with your health , it’s not everyone’s fortune.

It’s a strange place we all find ourselves in at the moment, and knowingly or unknowingly we all run into our limits. And like many others , I was not in the habbit of talking a lot about my state of mind. But talking really helps, someone who listens is helping. So if you find yourself in a bind, mentally or otherwise, find someone to talk to , ask for help. Or write , get it out, and maybe share it later. It really helps.

Brain damage , experiences and everyday life

Brain damage , for most people something they can’t really get grips with. It’s hard too imagine one day waking up and being unable performing even the most basic of tasks without these simple things being incredibly difficult. And in most cases it’s ‘ invisible’ . Nearly 3 years in too my recovery I have learned a lot. Maybe I have written about some aspects in earlier posts but it helps putting my thought in order, so bare with me.

After my revalidation process where I learned how to handle the most mundane daily tasks, comprehending my place in the larger world began. Where the first steps were about not forgetting putting out the stove when going outside, taking your keys when going out, and more of the sorts. It was now about issues much bigger. What is my place in society , what can I still offer in terms of work, helping people and what are achievable goals for me?

These questions were much harder too awnser than expected. During the second year keeping the routines as learned during my recovery had the priority. Creating a stable day to day environment was one thing I underestimated greatly. Easy weeks give a false notion of being able to do more or a lot more the following week or weeks.

All too soon the I found this to be a mistake , your efforts need to be in balance , creating a tension between rest and activity good enough to keep you going. An excess week in efforts will cause weeks of instability.

After the second year and getting a rhythm going, it was time looking ahead. My internal optimist was still thinking in terms of careers , and being ‘normal’ again. The first difficulty came when looking for sorts of an internship where I could experiment with how far I could go and what I could still do within a working environment.

Everybody I had been speaking with was full of admiration with my commitment and tenacity but ultimately most didn’t see a possibility for me working with them. Doubts about risk and the practical issues with providing me with the right support were dealbreakers.

Fortunately you just need 1 person taking a leap of faith. Which in my case someone did. It is of the utmost importance to be joining society again, in any way, in this case being back in a work environment. I have the freedom setting my own limits , have a group of very friendly colleagues, there are coffee machines (you miss those when not around). And most importantly I have work at my own level and in my old profession.

These seem small things but very important in terms of your self esteem. It’s also useful with planning your weekly activities , parts of it are filled with work and I don’t need to fill in my own. You get out the door and there is a rhythm.

Getting back in my area of expertise was very important , where learning new things doesn’t come easy if it’s related too older knowledge which I had before my brain damage it’s much easier. I am a lot slower and I can manage far shorter hours of focussing and need a lot of rest. But by relying on some basics from the past it’s easier to maintain. It takes less energy than totally new stuff.

I have tried learning something new. Working with my hands for example. Fixing bikes, soldering and the like. Fun as a hobby maybe, but it took me ages and lot’s of energy getting the most basic routines under my belt. My motor skills were simply not good enough anymore. This way proved to be a dead end.

Returning in my old profession, albeit at a slower pace and less demanding, proved vital in my succes in the workplace. A lot of people try different professions after a serious accident and recovery, and for me this was a first reaction, let’s learn something ‘easier’ than I was used to. This turned out to be the wrong way. At least for me. Maybe there should be a bit more room for exploring the stuff people already know before doing new things. For one I am not less intelligent , just a lot slower. A full time job is hard but it doesn’t make you a complete ‘write-off’

So all in all getting back in my old ways is a good thing, and has resulted in a parttime job. I have left the idea of full time employment. It’s still in the back of my head though. And I will try and bent it a bit further in the future. For now it’s been a boost in self confidence and gives back a bit of independence. Very important indeed.

Society is equipped for people who can run at full speed within the society. Preferably a bit faster. As soon as you get to an abrupt hold , for whatever reason, it’s very hard getting back in. In theory there are guidelines, programs and projects aimed at letting people with a disability being part of society again.

All good intentions and efforts aside, theory and practice are far apart. I have been lucky, met the right people willing to help at the right time. Others are not as fortunate and have daily hindrance on top of their usual problems. It takes an extra toll on these people. Because I know they would love to find a place to make a positive impact on society.

Dusseldorf marathon 2019

After a week of absolute rest, or to be more precise physical rest , the nerves were breaking havoc, it’s finally time to travel. Dusseldorf marathon here we come. Not running for a week is always strange and feels uncomfortable. If I am not running processing day to day events and input becomes a lot harder. I function quite a bit less than when I am running. So I have to adjust everything. Do less. That’s always a bit of an adjustment.

De trip was excellent, The ICE takes you too Dusseldorf in no time, an easy relaxed and comfortabel way of traveling I can highly recommend.

Weather forecast was promising during the week ahead and kept on getting beter. On the day itself it was dry and chilly at the start. Because the new half marathon start got delayed so dit the main event , the marathon. So another 15 more minutes keeping yourself warm. I felt a bit stiff while waiting but that was just nerves I guess.

The waiting went pretty fast and it was time for the start. During training it was pretty clear my sub 3 hour marathon was a bit of a stretch for now, but the pacers for sub 3 hours had a slow start and I felt pretty comfortable in this group.

The first kilometer was done in 4:30 so that was fine, I just stuck with this bunch and that went well. It was pretty cold during the first 7 kilometer en sometimes I felt pretty cold myself. The pace went up slowly and probably too fast for me between 10 and 15. But it felt very good and I decide not too slow down and decent towards the 3:15 pacers. Sub 3:15 was a time I could aim for based on training results and general fitness level. Which would mean a small improvement of my personal best.

But I ran very easy and it was time for a bit of a gamble. Let’s see how far I can take this and stay with this sub 3 hour group. The half marathon mark was passed in 1:28 so perfectly on target for just under 3 hours. But as everyone knows. A marathon starts at the 30 kilometer mark. And so it went, after 30 the pace started taking it’s toll. Also the gels didn’t go in very well. Normally it doesn’t matter which brand , flavor or whatever I take it’s never a problem. That’s why I never take my own. All the solutions for taking them along just irritate me. And the gels which the organizations give out normally work fine.

Not this time, they made me a bit sick. So now I had too rely on Iso drinks, water and bananas. Works as well just not as fast. At the 35 mark I was well and truly drained. No more energy and I had too walk at one refreshment post and make sure I took my Iso drink the right way. My lap times between 35 and 40 deteriorated a bit and weren’t as fast anymore.

It takes a lot of effort just getting too move forward, or so it feels, maybe it looks that way too. It’s at that point in the marathon I simply stop watching the lap times and pace on my watch and focus strictly on the running part , just keep running. The kilometeres go by and the signs on the road counting down, 5, 4 , 3 ,2 ,1 kilometer too go are unmissable here in Dusseldorf so hat helps a lot. It gets you thinking in kilometers instead of the bigger numbers.

At the 40 mark I felt better and the finish line started pulling. The final stretch on the Koningsallee and then on to the waterfront. At one point you make a slight turn and then run down towards the bank of the river with a nice view on the finish clock. At that moment it said 3:08 and change. At that moment I wanted too cross the finish line under 3:10, and I was going for a final sprint. Which didn’t feel like sprinting at all. 3:09:25 it was. I should have crossed the line cheering and jubilant , but I was simply happy just crossing. The final kilometers were very hard, and maybe because of my fast pace in the beginning. Then again if I had started out slower and try keeping it flat during the race and the energydip had come along I never would have crossed the finish under 3:10.

It has taken me a few days in realizing this new personal best and all the race day impressions. But I am stoked with the result. I’m very happy indeed.

Under 3 – Tenth week of training

Another week of training is done, one less run but all the others were a bit longer. With some build in speed parts and hill training. I was a bit tired at the beginning but at the end of the week it all went better. Lot’s of rain and wind as well all week, I don’t mind a bit of rain but every training gets a bit too much.

This is the first week of a serie of weeks where the amount of kilometers gets too an all-time high. In order too get me into marathon mode if you like. The long run was especially cold , wet and even some hail too accompany me on this 32 Kilometer long run. I started out early and after a few km’s in, I was already soaked. So I decided too ditch all the watching the hart rates , speeds etc on my watch and just focus on running and enjoying a nice pace.

After the first half the rain got a bit lesser, and even the sun showed up sometimes. It went very well and also my gel intake was up too par. I wasn’t really fatigued at the end and my muscles were not sore after and not the next day.

It also was pretty fast, I did however got some rain damage along the way but it wasn’t too bad. A very good week again despite tired me starting out.

Onto the next one !

Fear

Fear, my biggest fear ? Losing control, or more accurate losing the illusion of control. I have always wanted too have as much control over my life as possible. More often than not pushing it too the extreme. Combining this with setting high demands for myself and big goals, I made it quite difficult for myself to really have control. Not in ways of getting towards my goals but controlling myself.

Eventually my biggest fear became reality, I now only have limited control over my life. The daily condition of my brain determines what I can and cannot do that day and it makes for a lot of unexpected moments. Offcourse I do all I can controlling this. It’s my nature.

The difference with the past is I am not trying too force this at all costs. All I can do is plan well , exercise and train well and rest. Controlling everything simply costs too much of my valued and scarce resource , energy.

It had taught me that living in the moment is very valuable, you simply cannot control every aspect of your life. You can work on creating the conditions and environment too increase your chances of achieving your goals, and thats an attitude I recommend too everyone. But in the end you are reliant on so many factors and moments that there is a point at which it simply does not make sense trying to control more. You end up in an illusion, and you keep pushing for more influence on a increasingly smaller effect on the outcome of events.

Energy better spend on fun things in life, or activity’s which you can do in reaching your goals. Not just trying too control everything.

It’s strange how you always fall back on old instincts , which have taken me far in life and still my discipline , controlling nature and perseverance take me far today. But in the past these attributes were in my way a lot of the time. It backfired numerous times when achieving my goals. Controle became a goal in itself. There was no more logic.

Now there is more acquiescence, frustration about my failing brain is still there, and also acceptance is a long way down the line, but this has given me the insight in the simple fact you can better put your energy in little steps towards a goal , the using it too control stuff you can’t. Or obsess over details. Problems will arise anyhow, and when they do , I will deal with them.

My life has a lot more direction and focus , and is more relaxed than it used too be. Everything is a bit smaller, at a lower pace. Unnecessary fear is bad guidance , and working at overcoming this fear is a very valuable side effect too my brain damage. I doubt if I would have ever gotten it otherwise.

3 years later

It has been 3 years already , since my brain injury, a sort of 3th anniversary combined with my 39th as it were. It has been a year of learning, yet again about dealing with the inevitable limits caused by permanent brain damage. Most notably the realization that there is, in fact a limit in what I can achieve. Building at expanding my activities in the way of work, social life and all other activities is not something I can do limitless. Although this was always in the back of my head, by planning meticulously and adding slowly that I somehow could return to my old levels, and in a way my old self.

As it turns out , that’s not the way it works, last year I upped my working hours towards 8 hours per week, first in 2 days and later on spread out over 3. It all seemed to work out, at least this was the initial feeling. Until the fatigue hit me and it took a couple of months in recovery getting back.

So I will keep it at 6 hours over 2 days. Which means I can recover and get a social or other activity in a week. Which is always fun, especially getting together with family and friends. In my enthusiasm I will go over my limits on such occasions , just because it’s so good having people around. So it’s a bit of a focus this year in getting the most out of that time spent.

In this quest in staying as stable as possible , keeping myself fit is crucial , the fitter I am, the better I can cope with moments were all else fails. Purly on physical strength I can manage to stay afloat. Getting home when I miss a train, It’s way too busy or if I simply forget too rest enough.

Periods in which I could exercise less my overall functionality and recovery was way off. It took ages. Luckily I really enjoy my running sessions, which clear my head like nothing else. It’s the one thing I can really control which is excellent because it’s vital in my ability too function properly.

A discovery which I hadn’t made when I was in my revalidation stage , is that the left side of my body is way worse than it was before. I hadn’t noticed this because I predominately use my right. By getting into exercising and building strength on my left side, I hope too improve this.

The hard part is realizing that I am , most likely at my maximum capacity , and I now know what it takes to stay at this level. A lot of disciple , rest staying fit and planning. It’s very weird not having a full time job , bering dependent on other people for a lot of things and being restricted in crafting your own future.

Nevertheless , I am very lucky being this well off, having a lovely group of family and friends to lean on. This makes me a very happy and fortunate person. Which I am very grateful for.

For the future it’s important too find real acceptance and not too hold on too the past and the vision of getting to were I was before this happened. I have too find progression in a more natural and organic way instead of just pushing my limits.

Find the challenge in things I can control.

Under 3 – Second and third week of training

Another overview of my training activities, or lack thereof. Week 2 was mostly wasted on a food poisoning , which left just two runs in week 2. Week 3 also started in recovery mode which was rather annoying. At the end of the week I managed a few runs , a bit unfortunate but luckily at the beginning of my training plan and not at the end just before a marathon.

Training itself went well, just slightly slower due too overall weakness from the stint of food poisoning. All in all it held me back for a good 8 days.

Happy to be back and looking forward to week 4 !

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.

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.