Tag: encephalitis

Braindamage – Broken memory and remembering things.

Frequently I get asked how I remember things with my broken short term memory. The short answer is , I make a list. In this little article I’m getting into the subject of lists and how to go about them. Not making too much or too few lists and what not.

This is purely my way of getting by with memory disfunction and a lot of the stuff is applicable for people with fully functioning brains as well. Because everyone’s mental energy drops during the day. And in the end only sleep can recharge the brain.

It’s also nog a ‘one size fits all’ solution. There are lot’s of variations within the field of memory and how to memorize stuff. This is just a representation of how I do it. And I hope some of you will get some inspiration for managing ones own memory deficiency. We all have it. We all forget stuff.

I thrive with stability, a good nights sleep, a steady day planning. And my day to day is where my first list comes around the corner. My weekly planning. It’s a weekly representation of what I’m doing that week. The must do’s and how much time a have for other stuff which I can use to plan things. Or not.

I am working with a fairly simply point system. During my recovery period I have experimented with how much an activity costs energy wise. For my daily load balance I derived the number 28 from these experiments. So in order to be able to get on the next day and be my cheery self I don’t want to go over that number.

So I have a maximum points in cognitive energy which is set to 28. My Energon (Transformers reference !) so to speak. I can use these point during my day and must not go over them. For example, reading an easy book for half an hour , minus 1 point, A hard one minus 2. Outdoor appointment 3 points down.

I can also collect points by resting, well not totally, like mediation for 15 minutes 0,5 points added, running for an hour 1 point added. All adding and subtracting towards the 28 total points available.

So that’s the rundown of the first list. It’s not an exact science by the way, it’s my guideline for the week. There are weeks which will be better, or weeks that are worse. But staying near to the 28 points will mean the majority of my weeks should be stable.

But there are more lists, a list for when I set foot outside my door. Which contains of stuff I need to bring. Phone, keys, wallet, headset and so on. That list has been replaced by a ready to go bag which contains most of these items. Basically a list in a different form. Always ready for its purpose.

There is a list for whatever pops in my mind. So stuff that comes to mind and I want to remember. It’s basically the collection of my short term memory.

Within my daily planning there is stuff to do. Which will get on a to do list. I really hate that list as it is the never-ending list of lists. It gives you the feeling that you are never finished. Which you are not. But this can be contained.

I have a small to do list which only contains 3 items , which have the most priority at that time. Ones I completed these 3 I trash the list. Which means I have finished something.

Breaks , my and everyones best friend. It’s impossible for me and the rest of us to be fully cognitively active at a high leven all day long. Yes even for the superstars among us. Cognitive energy declines during the day. And recharging only really occurs when sleeping. Processing the experiences of the day takes place during our sleep. And we have to process it all in order to recharge.

Taking breaks have the function of recharging in between. So in my planning they are there all during the dat. These have 0 in value, so they don’t do anything against the decrease of my cognitive energy. Only meditation and exercise will do that.

The one thing you must remember is not to start the to do list and knowing you cannot finish it. It leaves an open ended task at the end of the day which will haunt the mind during the rest of the day. So quitting earlier sometimes is not a problem.

If you are doing a high cognitive energy task, plan it strict. Make sure there are no distractions. Mail off, phone out of reach, take a break before starting , stop when the planned time is up.

Someone which has trained for doing high cognitive energy tasks has about 4 hours of real energy during the day to do these effectively. So going over that time hardly does the job any good, grinding it out for 8 hours might be fun for the hashtag ‘#alwaysbusy’ but really does not do you any favors. The elimination of distractions does.

The day planning and to do lists are what you can do at the maximum of one day. And very important, leave room for unexpected stuff, You can’t plan a day from dusk till dawn with pre planned activity’s , meetings take longer, so then also do breaks. You must not skip breaks. The day needs to breath , have room to grow or shrink. Otherwise you will loose steam and energy and that all takes away from doing stuff properly , and your day will be run by the unexpected.

Practical lists, or more notes are the final variety in my list repertoire. I write a daily entry in my journal which has all the stuff I did, my mental and physical state and whatever thoughts need writing down.

Besides the journal , I write when I read books. For some just a quick scribble to remember some things so I don’t need te re-read pages and get on reading. And notes when reading books I need for future reference. The things I want to remember I take notes and later I will work these notes out till full blown notes which takes a larger picture into account. I have a lot of summary’s of books I read. Very handy if I want to revisit some of the knowledge.

I used to memorize a lot and could revisit a lot out of the top of my head, nowadays that is very hard, and writing helps me with this proces.

Finally, write the lists and notes on paper, with a pen, or pencil. Not in digital formats. Not in an app, not in words excel or whatever just write it down.
Ok maybe just a format for the weekly planning, but fill it out by hand.

Writing as an activity, etches the writings in the brain. And amazingly enough also in my damaged brain. So buy notebooks in all shapes and sizes and start writing.

This is the first epistle about life with brain damage and the practical side of things all people can benefit from. Nobody has endless amounts of (cognitive) energy. But with some simple methods you can improve some aspects.

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.

Under 3 – A new attempt

While preparing for my last marathon I set a goal , running under 3 hours. At the time it meant a 18 minutes discount from my personal best. Quite a bit, and a reach. But the effort of chasing this goal was a new Personal best , 3:09:25. Excellent progress, and thus proof that setting goals is a very rewarding activity. Now it’s time to try again.

The goal remains the same. A sub 3 hour marathon, the same location, Dusseldorf. What will be different this time is my training method, amongst other things. I have been training with a schedule for running a marathon and getting across the finish line in one piece. Which was a feat in itself 3 years ago after suffering my brain damage. Running saved my life when I got ill, simply because I had an excellent fitness level. Ever since it helps me function within my new boundaries to the best of my ability. So largely because of the running and the discipline it brings I am were I am today.

All the more reason to set this goal and get cracking. So the training schedule will be different. So the first step is figuring out what it takes for me to be able to run under 3 hours.
In the meantime I will keep training as usual. until I am largely confident of my new direction.

The second step will be nutrition , I already eat as healthy as possible without overdoing it. Om my longruns I always bring food and drinks , mostly gel and bananas for the food part. Only problem is I mostly don’t eat it. I simply forget when things go smooth, and when things get though, only then I start eating. Which means I am always too late.

When racing a marathon I never forget, simply because all the stations which can’t be overlooked.
But in order for me to get the most out of the nutrition I need to practice more. I am now looking into simply setting alarms on my watch so I don’t forget. Also the recovery food after my run can do with an improvement. So lot’s of work on that front as well.

Third step is a more efficient resting method. I already need lot’s of rest because of my brain damage. So I am not really sure how to improve this bit. I will need some research. Anyway I will update as much as possible on my progress and process. Until next time !

Small improvements , massive result

Striving to run a marathon in under 3 hours I discovered something new, well for me at least. I had read about it but never really given it any further attention. The large benefits of the small improvements you make if you do something long and consistent enough.

In sports it has been a thing for a few years now, make small improvements in a lot of areas and the sum will surpass anything. Which is off course true , mathematical speaking, take a spreadsheet and set a few numbers and keep adding 1% , compounding in action.

During my training it’s been evident that regularity in workouts is hugely important in getting the most small improvements. But here comes the kicker, for a long time you will not notice any improvements at all. It’s like being stuck, and all of a sudden there is this breakthrough moment. My times improved , tartrate dropped and recovery was shorter.

I am am nowhere near as data driven as a top athlete , but I just noticed the effect and it was significant.
Like it came out of nowhere. Which when you look at it, isn’t true. The consistency and persistence combined with a slow and gradual increase of volume in training has made this possible. But at first there is a whole lot of time were you notice nothing of great significance, it’s just maintaining your condition it seems and not moving forward at all. This is a dangerous point, you get demotivated and you start focussing on something else. Or you quit.

During my revalidation it was always hammered down that you should celebrate small victories, I was mostly frustrated because I was not achieving my bigger goals. I tried and compensate it by working harder and having draw backs. Finally I kept my schedule and things improved. Still not too my liking and my real breakthrough moment never really came.

In hindsight it was just the amount of time that was simply too short, you can’t do that much in a year and I have to get back to the drawing board and see how I can get at these small improvements by means of regularity and slowly increasing my load. I am stuck in a vacuum of no progress for some time now. At one hand that could be it, I am at my maximum in recovery, but I believe in something better.

The running is the proof for me. And while thinking about this subject it really applies too all things that are hard in the beginning. Or stay hard for a long . long time. Take learning how too read for example, or paying off a huge debt. In the beginning nothing real seems too happen. All the effort looks worthless. But then there is a moment it all takes off. The ball starts rolling , and then it goes really fast.

What I have learned , it’s more important too regularly work on a goal and grab the small improvements. Than try and sprinting towards it. Persistence is key , it should become a habit and not a burden.

Let’s get more small improvements!

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 – Fourth week of training

This week has been a successful one, full training schedule done ! It went very well and although I can’t yet get enough speed this is something that I am working on with extra speed training and short speedy parts during the long runs. But that did not take away the fun , I am very happy I could cope with the Km’s smoothly. No weird pains or sore muscles in between the sessions. Which makes me a very happy person.

Strength training I am still doing via yoga sessions which I like a lot, it’s more tranquil and the continuous movement makes for a more flexible me. Which is an added bonus. Also it is supposed to make you more resilient and thus less prone to injuries. And it makes me more relaxes mentally , which is kind of ideal being me. 4 sessions this week and I am planning to keep this up.

All in all an excellent week. On to the next !

Running, a new goal.

I love running, I also need it as a way for clearing my head and stay as fit as possible in order to be able to manage day to day activity and keep my balance. As I have mentioned before, after my brain injury , my running prior to the accident saved my life. And it also gave me tools for persisting during my revalidation process.

As with running revalidation starts and ends with keeping at it, and with most things in life this helps a great deal. Being conditioned this way has helped me true rough patches and kept me sane during periods when my brain simply gave in. So all in all running means a great deal in my life.

For this year I am going to write more about running and my day to day with brain damage. As a lot of people can’t really imagine the effects it has on life. But I am starting out with running. I have ran a few marathons and my personal best is 3:17:22 seconds. Which I am very happy with.

Ever since I have ran this fast I am contemplating if it’s possible to run a sub 3 hour marathon. In my case getting 18:17 seconds off my personal best. Which is a bit steep. But if I don’t try I will never know. So I am starting a journey which hopefully gets me under the famous 3 hour barrier.

I have said it , I want to run a marathon under 3 hours. And now you can all help me do this. Any training , nutrition and general tips are more then welcome ! Let’s go!

2019 goals

A new year and new goals, this will be my first time setting goals , up until now I mostly used to do lists and loosely set goals. Resulting in missing real focus. In turn running up the to do’s on the good old to do list.

First up the finance side of tings. Which can be roughly divided into 2 parts, mostly cost reduction and building wealth. The easiest way for reducing costs is paying off the mortgage which is the only and biggest debt. Last year saw the biggest reduction so far. It’s so easy it’s hard not simply keep on doing it. However I am now at a point which all the alternatives in the market, renting or buying another house will be more expensive. I have no way of living any cheaper. The mortgage needs paying off so I will continue doing the extra payments but the focus needs too be on other more lucrative investments. So the goal for 2019 is paying off an extra 1200 euro’s. That’s it.

Which leaves the other part , my stock and ETF portfolio. A fixed amount will be added each month, divided over ETF’s and handpicked company’s. In which dividend payments will be one of the main factors, as part of my passive income strategy. My goal is getting my dividend payments up too 1500 euro’s per year. In 2018 the total got over a 1000 for the first time, 1021,80. A small milestone. Let’s see if my new goal is achievable.

Something new I got into in 2018 and developed more during the year is options trading. Which turned out too be the suprise of 2018. I used too write options every now and then on stocks I wanted too buy, not really consistent and just for fun. Mostly I didn’t get the stocks and I tried again. After some time I started making this a more systematic approach and I also started writing options on stocks I had in my portfolio.

At the end of 2018 I also started using part of my cash buffers as collateral for writing options. Usually you will have a good idea which part of the buffers you don’t need in the coming month, so it’s pretty safe using a part of this as a way for generating extra returns.

All in all this approach yielded a nice 10,21% return on risked capital. Not shocking in the option trading world but for me an encourachement for learning more about it and applying this in 2019. I will write about my learning process in the option series on this blog.

So 3 finance goals, keep downsizing the mortgage , generate more passive income and enhance the result with option trading.

But without my health all the money is worthless. 2018 has been a year with a few stark reminders of my permanent brain damage. I took on too much in some instances and got into a few nasty periods afterwards. 2019 is all about finding and keeping the balance again and really accept my new me. I can’t keep going on adding more work each time until I crash. The focus will be on being stronger, training the left side of my body and going back too the start of my revalidation process and taking and celebrating small steps forward. I will elaborate more on this in coming blog posts. For now have a very good 2019 !