Living with cognitive fatigue

Introduction

Most people have a hard time understanding what it's like to live with cognitive fatigue, one of the most common things people experience after a stroke, traumatic brain injury, cancer, or other serious health challenges. When people see me riding my bike one minute and I tell them the next that I'm struggling to catch the bus... or tell them that I need to go home to rest after a couple of hours of socializing, most people look at me like a question mark. They can understand it, even myself sometimes struggle to get it.

I don't blame anyone for not understanding, the only thing that bothers me is being faced with the need to explain it. So let me tell you a story from a couple of days in my everyday life. What I'm going to tell you now is not fiction, it's reality, It's just a couple of ordinary days in my life, and how I cope with ordinary challenges.

Is a story about how a small issue one day turns into a huge problem that drain me for energy for several days, and how I manage to solve it, and move on, using what I have learn and gain of experience the last couple of years, not perfekt, not even the best way, but the pure reality as I experince things a lot of times.

Just a ordinary day with cognitive fatigue

One day in late June 2026, the day started as normal. I woke up at half past six, checked the news on my iPad before getting up at seven. Went down to the kitchen and put on a pot of coffee, checked my blood sugar, (I'm a diabetic) went to the bathroom and had a little freshen up before sitting down with coffee and breakfast. 

Today my eldest son is coming to visit, and we are going to Oslo to check out a special grocery store on Skøyen. Looking forward to a nice city tour and a good chat with my son.

I had prepared for that day, been careful with what I had done the last couple of days to save energy for today, driving through the city, being social for a day can be demanding for me, but I am aware of that and have learned to prepare for it.

I put in a machine with laundry, and here the challenges begin, when it is finished and I am about to empty it I manage to break the door of the washer, I am not quite sure how I managed it, but this is such a typical strange thing that I sometimes do without fully understanding how or why.

The real challenge

The real challenge begins when I start thinking about a solution, can I fix it, or do I have to buy a new washing machine? A small problem quickly becomes a big problem in my head, and the stress level starts to build.

I find my Mac and start googling for a new washing machine, price, model, where, how quickly can I get one, the questions just flood over me, hit me like a tsunami, I felt the energy just start to drain out quickly, the cotton in my head started to turn to concrete.

My lessons and experiences hit me, I stop for a moment, breathe in and out slowly, stop and think, walk a way, I have learned. I get some kind of control over my stress. Park the buy option, let it go, focus on the good things, that's the plan for the day.

I looked at the clock, about an hour until my son arrived, but unfortunately that meant I had an hour to kill, and I started considering whether I could fix it myself, dismantle the door and take it down to my workshop and start fixing it. I couldn't let go, even when I knew it wasn't the right time to look at it.

So even when I knew that was a bad idea, I did start on a fix, I knew it and still i did it. Already on that point my head was to tired to think clearly. Luckily, my son arrives, and we look at it a bit together, make a half-hearted solution, and heading for town.

Going to town

I was driving, and we decided to take the route I use when I work near Skøyen before the accident, a kind of “trip down memory lane.” It was a nice trip, good conversations along the way, it helped me forget about the washer problem for a few hours, relax and have fun.

We spend a couple of hours in town, walking around talking about food, old memories and some windows shopping😁, before heading home the same way we drove down.

My son drove home shortly after we got back to my place. I was feeling a bit tired, mowed the lawn before taking a look at my washer problem again. I wasn't entirely happy with the half-hearted solution we had found, but tried putting the door back together and it didn't work, so back to considering buying a new one. So the next few hours were spent with Google, checking prices, delivery options, pickup options..., plus, plus, plus.

Managing cognitive fatigue... or not

Yes. I forgot how demanding it had been to drive through Oslo twice today, being sosial for some hours, the fatigue hit with a big bang, the concrete block in my head turned into a bigger and bigger lump of lead that pressed my head down more and more, the headache began, the nausea, the fatigue, the despair, the desperation, the panic, everything grew into enormous problems, no solutions, just problems. I tumble into bed with some painkillers, just want to sleep, to forget.

I had a great time with my son that day. So yes, it was a good and positive day in many ways. I can live on these moments for a while, it's these little moments that really help me stay on top. I still have a way to go to "learn" not to mix things up.

Just to sum up that day, the "problem" with my washing machine was at the bottom of my day that day and ate up the reserve I had built up to handle that day, without it I probably would have been less exhausted that day, so trying to fix the washer challenges that day became much more than I had the capacity for, I hit rock bottom with a bang.

Lesson: Don't combine a good day with trying to solve unnecessary problems. 🤔

The following day

The following morning, with seven hours of relatively good sleep behind me, I woke up refreshed and energized... you bet, wishful thinking, no and yes.

I actually slept more or less through the night, probably thanks to the painkillers.

But refreshed and energized, not even close, I woke up tired and empty.

My head was still filled with a solid heavy concrete block.

As I stood in front of the coffee machine trying to focus on getting it to start, it felt like I was standing outside my body, and when I poured myself a cup of coffee a little later, I realized that I had made coffee without putting in coffee beans... my head wasn't working that morning, I made a new pot of coffee now with beans.😀 

It was a beautiful summer day, sun from a clear blue sky, I had planned to go for a long and good bike ride in the mountains that day, my way of recharging the batteries after a demanding day..., I will explain further down.

But, yes sorry there was a big BUT, the washer problem. It quickly started to overshadow the good plan of a bike ride for charging, I try, I really try to park it, but it took up so much space in my head.

Sitting with my morning coffee I starte googling again. I knew it was the wrong thing to do, my head was still heavy, still full of concrete.

I couldn't let go, time flies when you start googling and trying to find the best price for the washing machine I really wanted. Not just to buy based on price, I want value for money, I want quality that I know. Probaly wrong thinking in my situation but this is who I am.

After a couple of hours with google, I try to change my mindset to get out on a much needed bike ride.

The distraction

A message pops up, It was a friend who asked me to go with him on a bike ride the following Saturday, nice..., but at that time it was the part I didn't need just that, that message tricked my head into stress mode, so somehow I suddenly find myself starting to disassemble the washing machine to look for the door problem. 

Going down to my workshop with the washing machine door and throwing myself into the challenge, for me it was a way to distance myself from following up on the question about the bike ride this weekend, I really wanted to go on that ride, I just didn't know how to respond and make it happen, the washing machine problem overshadowed everything.

The good thing was that by focusing on finding a solution to avoid replying to the message, I was able to do what I'm good at, analyze the problem, look at it from all sides, and slowly a solution emerges. After a couple of hours, I knew how to fix it, and I was able to send a reply to join the bike ride. 

The downside was my good plans for go on a ride today to recharge was destroyed. I needed some epoxy glue to finish the fix, so to at least get a little bike ride on this nice day, I cycled to Maxbo to buy glue, but with my head I ended up with four different packages of glue, even though I really knew I only needed the first one I chose, my head couldn't accept it, the concrete block in the head was still there, heavy and blocking for anykind of sensible thinking, so yes, I ended up with four different types of glue and some packages of screws I didn't need either.

I fixed it

Back home I manage to repair the door, actually pretty good repair. So no new washer this time, or...😁

The day was over by the time I had fixed the washing machine challenge, and once again the concrete had turned into a big lump of lead weighing down my head.

But I fixed it, the feeling of knowing I fixed it was an important victory for me, for a brief moment I felt mastery again, I could even if it came with a high price. So now I can buy a new washer knowing that I can 😂

The rest of the day was spent lying on the couch staring at some stupid stuff on Youtube before I went to bed. No painkillers today, so that's a little better.

Still hoping to wake up refreshed and full of energy tomorrow, like I've been dreaming of experiencing for the past three years. Still hoping that day will come again.

Summing up

I manage to solve the challenge by going back and forth over a couple of days, taking small breaks, by shifting my focus from the challenge to other things at regular intervals. It helped to have fun with my son, mow the lawn instead of spending time on the problem, using another challenge as an excuse to start a solution, and I have learned that it is perfectly okay and normal to run out of energy during “big” challenges, and to accept that I need a few days afterwards to recover.

The satisfying feeling of being able to solve the problem is just amazing. It is in these moments that I feel mastery again, important moments for building my self-confidence.

I probably should have just bought a new washing machine. And I probably could have, and maybe I will..., but where's the fun in that, and where's the satisfaction in that?

I managed to get out on the road with my friends the following weekend. I got a much-needed good day in the mountains, a long ride in good company, I really needed that.

The week

So that week I had:
  - A one-hour meeting with my experience forum.
  - A half-day social city trip with my son.
  - A washing machine challenge.
  - A day of mountain biking with some friends.
  - In addition to the "usual" things, like grocery shopping, some house cleaning...

I think this is "nothing" for most people. For me with cognitive fatigue, it was way too much. The washer challenge killed the week for me.

The outcome

The challenge is that it usually takes a couple of days to recharge, so this weekend's trip hit me a little too early, so I didn't fully recharge, but I wanted to do that trip, and I did it.

Although I knew it would probably stretch the string a little too long, so yes, I was aware of the risk of complete burnout.

So yes, fatigue hit and it hit hard. The following week I was more or less out of energy. It took me most of that week to recharge. Unfortunately, that means I have to disconnect from the outside world, close the door, and go into my own little private bubble where I do nothing for almost a week.

I barely manage to go shopping, to do the necessary daily task in that week...

This is living with cognitive fatigue

This is living with cognitive fatigue. Small problems can turn into big challenges that eat you up before you know it, draining you of what little energy you have to do the things you enjoy doing, the things that actually energize you, or the necessary things you should have done.

When you've been completely drained of energy, it can take days, even weeks, to recharge, days where your head slowly goes from being filled with solid lead, to heavy concrete, to light concrete, to cotton. Yes, cotton is for me the best case scenario, it never leaves, so every time I need to get my head to do things, I have to search through a fuzzy cotton cloud to find the energy to do it.

My son told me that some days when he comes home from a hard day at work, his head feels like concrete, and the kids are running around massaging him, his wife is talking, then he struggles to get things done, cook, drive the kids to practice, he says I can concentrate, I can't think straight.

I told him that's how I feel on a pretty normal good day, that's where I basically start my day...every day, a ordinary day.

Here you can read more about Cognitive Fatigue

I've learned

I've learned that after my head injury I struggle to handle multiple things at once, so when I'm faced with a challenge that needs to be solved, it takes over all my capacity, it grows and grows, pushing all the other things I either had to, should or wanted to do out of my head. It becomes everything.

And if I push myself to do those things, the things I want, need or want to do, it becomes an overload for my brain, and I use more energy than I have, a mental overload, I get completely burned out, complete mental fatigue.

I have learned that my ability to handle complex problems is more or less gone, that this is one of the "normal" cognitive challenges people can experience, with brain damage.

And when you occasionally have to deal with complex problem solving, it triggers cognitive fatigue.

Concentration and focusing is also a cognitive skills I struggle with in the same way, so in combination with the challenge of complex problem solving, it can make "normal" things like:

Using public transport, where there are a lot of people around me, while having to keep track of timetables, which bus, train or plane I'm taking, where I'm going from, is for me a complex situation combined with the need for concentration, which I struggle with. So I avoid it as much as possible.

Going to the grocery store, I have to plan to do it at times when I know there are as few other people in the store as possible, either early in the morning or late at night.

That I need to shop at times with fewer distractions, so I can focus and concentrate on what's on my list, and come home with what I need.

Going out to eat on a restaurant, going to the movie +++

Pretty much every time I need to use my brain to solve multiple things at once, it triggers cognitive fatigue.

So why can I ride a bike for hours without getting burned out?

When I ride a bike, believe it or not, I don't use my brain..., to much😁. It's pretty much the only thing I can do without draining my mental energy. It actually recharges me. It's where I find peace, where I can flow, relax, finding peace of mind, where I can live as if I don't have a brain injury, where I feel "normal", my happy space.

I need it to cope with everything else in my life. And I still struggle some days to get off the couch and onto my bike, Some days it's a struggle against, the cotton that's always in my head, the cotton that some days turns into concrete.., and drag me down to I hit rock bottom.

I know I'm not alone in feeling that exercise, being active, helps you recharge when you're living with mental fatigue. I've been to camps with the Sunnaas Foundation where I learned about active rehabilitation, and the importance of it, how it builds mastering, self-confidence, getting you out of the hole and into the light, and recharge you.

Reflections

This is the reality very few see, know about when you see people living with brain injuries, those struggling with cognitive fatigue and other cognitive issues, because on the outside we look like everyone else, and we don't want to be treated like we're different. We just need you to respect us for who we are, accept that being different is normal, that the world is a better place with difference.

I avoid people, not because I don't like being around other people or don't want to be social, but because I'm tired of being treated like I'm sick, that I'm not who I used to be, that I'm different. belive me, I'm not sick, I'm actually pretty good, feeling pretty good, yes, I'm not who I used to be, I've changed, I'm different, but aren't we all?

We talk a lot about inclusion, it's a bit of a hype. In my opinion, the biggest barrier to inclusion is fear, fear of facing what we don't understand, fear of asking people how they really feel, fear of hearing the answer, fear of facing the unknown, fear of not knowing what to answer, what to do, when it's just about the ability to open your eyes and ears, listen and see, accept that you don't have to understand, you don't have to have an answer, I don't really even expect you to answer or understand, just be there, treat me like you treat everyone else, talk about normal things, treat me like normal.

Inclusion, regardless of people's color, religion, differences, disabilities..., it's not about you, it's about everyone and everything.

It's about respect, respect for the unknown, respect for what we can't understand, accept that there is not a answer to everything, and that doesn't mean there aren't questions, so don't be afraid to ask, don't fear questions or hearing the answer. The only way to learn is to ask, to be curious and last but not least, be patient enough to listen.

I'll leave you with this

A typical day of cognitive fatigue is just another day for me, just like a typical day is for all of us. I am different, but aren't we all? When you take the time to look at nature, it is full of color. Nothing looks the same, everything is different.

This is the beauty of nature. Do you really want to change it? Would you wish there was only one color? Would you wish everything in nature looked the same? Probably not, so why is it that people are like this, we struggle to accept that people are different, that we not all look the same, the beauty of nature and in people or anything is that nothing looks the same, different is normal, different is an advantage, it's valuable.

Remember this: Each person has their own identity and beauty. That everyone is different is what makes you special. If we were all the same, life would be boring.