This time I'm going to talk about fatigue, my thoughts. My experiences from my life with fatigue/brain injury, how my everyday life has been and is. What it's like to be greeted with "you look fresh then." But yes, that's on the outside..., dare you ask about the inside?
Or it's more about, if you really want to hear the answer, there's unfortunately no short version, but if you take the time to read this article, you might actually learn something not only about me, but about how many people live with an invisible disability like, brain injury, faigue..., fighting a battel you probaly never see.
It's now been 2 ½ years since my bicycle accident in May 2023.
I have learned over time that one of my biggest challenges after the accident is fatigue, fatigue..., a word I probably close to never had heard about before the accident and if I had heard it, it wasn't something I can say I remembered and at least didn't understand. Today, fatigue is a lifestyle change that I didn't choose or want to make, but which now more or less governs my everyday life.
Fatigue is a strange thing to live with, but what is fatigue?
Fatigue, also known as exhaustion in, is a condition characterized by extreme tiredness and exhaustion that does not necessarily improve or go away with rest or sleep. This phenomenon goes far beyond ordinary tiredness, and can affect a person's physical, mental and emotional well-being. Living with fatigue is therefore something that must be learned. With the right measures and tools, living with fatigue can still be combined with a good everyday life for most people.
Fatigue can have various causes and affect individuals in different ways. Fatigue
often occurs as a reaction to physical or mental overexertion (which can often be the result of an accident), prolonged stress, lack of sleep, or as a side effect of various medical conditions. A person who finds themselves in a situation where they have to live with fatigue may experience extreme lethargy, lack of energy, and even difficulty completing daily tasks.
Symptoms of fatigue include general tiredness, impaired concentration, muscle weakness, changes in sleep patterns, and emotional changes such as increased irritability or emotional vulnerability. It is important to distinguish living with fatigue from normal fatigue, as the latter can usually be improved with rest, while fatigue persists despite rest.
For my version of fatigue, I learned at Sunnaas that it is also called brain fatigue as it is my brain that has been damaged, but yes, I recognize most of what is the general description of fatigue, my cause of fatigue is due to a serious head injury.
Fatigue can manifest itself in different ways in different individuals. Some of the most common symptoms are:
These symptoms can have a significant impact on a person's daily life, and living with fatigue is no joke. Being in an accident, for example, can result in limitations in work ability, reduced social interaction, and even impaired mental health. Living with fatigue can also seem like an impossible task on top of everything else.
Those who knew me before the accident would probably say that they knew me as a person who was very active, had a full calendar, both at work and outside of work, rarely sat still, got things done, took responsibility for tasks, followed up and delivered when I was supposed to.
Rarely said no to things, maybe should have, but felt that I always had enough capacity for everything that needed to be done, a little Duracell bunny 😅.
My life today with fatigue is nowhere near what it was before.
I experienced it especially after the summer this year, the fall became a little too active
for me, suddenly there were too many tasks in my calendar, daily there were things that had to be done, and I understood pretty fast that I had to reduce it, but it almost feels a little embarrassing to tell it, but I had a task in my calendar every day the 5 weekdays a week, two days a week, training with a physiotherapist, one day training with Logped, every other Tuesday there was an experience forum with the Sunnaas gang, some doctor visits, ophthalmologist, MRI, diabetes control, yes, I know these are small appointments for most people, in addition I was at two camps with the Sunnaas foundation. So both very nice things and some need to do things, in addition to these tasks I still had to shop for my daily needs, cook, wash, follow up with my teenagers, not much, but still a little with the youngest's school even though it is almost over, but I want to be precent in my kids life.
Yes, I know that for most people it's not much, "and because I don't have a job on the side, so what's the problem? I have all the time in the world, I'm home all day...," yes Sorry to say it, but these are the phrases I've been met with when I say I have too many tasks, along with "you look fresh again, good to see you're in good shape..." but this is what fatigue is for me these task suddenly became too much for me, I couldn't catch up between tasks so I ended up completely exhausted, broke down, laying home on the couch for a week and was sick. This part no one saw, I was home alone fighting a battle that very few understand, the battle no one sees, the invisible handicap, my everyday fight.
I have now got adjusted my appointments so that I only have a maximum of three things on the calendar during the week, in addition to my regular tasks such as shopping, cooking, cleaning, getting up, getting started, exercising..., yes all the "regular" daily tasks that you don't think about until you get sick, are suddenly tasks that have to be planned, that require a lot of effort to get done, that exhaust me, that come at the expense of other tasks that I wish I could have done., like being social with friends, but since most of them have probably disappeared because I haven't had the energy to get in touch🤔, it has resolved itself over time. Surplus to go to a shopping mall to get some external input and just feel the energi from be in a crowded place again, go to the cinema, visit family, go out to eat..., do normal things again.
Yes, I feel embarrassed and a bit like a hypochondriac when I meet people and tell them what it's like to live with fatigue, because how are they supposed to understand it? I barely understand it myself. And when you choose to tell it, I've sometimes been met with, "be glad you're alive, there are many others who have it much, much worse than you", and believe me, yes I'm incredibly happy that I'm alive, and yes I am fully aware of that there are people out there in the world who have it much worse than I have, but that doesn't help me or them, I don't live their lives and they don't live my life.
One of the things I learned at camps with the Sunnaas Foundation was that I am not alone in these feelings or in these bad experiences. I am not a hypochondriac, I'm not paranoid. Most other people who also live with brain injury, experience lots of the same things. Fatigue is one of the most common challenges people with an acquired brain injury experience, and have to learn to live with.
I'm well on my way to learning how to do just that, fortunately, yes I write fortunately, because I had and have been able to reuse my good ability to be a structured person. Because having good routines and structure is crucial to being able to live well with fatigue.
I have a good shopping list in the Notes app on my iPhone, and since I am a bit of a Mac nerd, I have both a Mac, iPad ++ in addition to my iPhone so my lists sync completely across all my devices. Long before my accident, I learned the advantage of making simple lists that I could easily check off, especially for my shopping trips to grocery stores and other stores I use regularly. Through my job, I was used to using electronic reminders as a calendar, so in a way I was prepared for a life of fatigue🤔. 
Since I have always been a bit of a slacker by nature😄, I found out early on that regular routines for cleaning, tidying up, and regular maintenance tasks simplified my life and gave me time to do more fun things, like cycling, socializing, going to the cinema, traveling ++.
So having those lists and good routines has been and is invaluable in my everyday life today. Because from the use to making my life more comfortable and giving me the opportunity to focus more on work, family and leisure, to today where they are a necessity to be able to manage even the simplest tasks, like getting up in the morning, going to Groceries, tidying up, cleaning, a few times a week with physio, speech therapist and experience forum, and having a much needed time go out to cycle a little, to keep my mental health in shape.
For me, using an hour with physio training (which is a necessity to get help with rehabilitation after the physical ailments I have after the accident) or with speech therapist is so demanding that it is not certain that I will have capacity to get much more done that day..., it sounds 
strange, yes even to my ears it still does, but this is what living with fatigue is, even small task can drain your battery completely, and it takes a long time to re-charge it, no fast charging here anymore🤔.
All the regular tasks that are part of most people's lives, which I used to just do without thinking about before, are now suddenly tasks that I have to plan for, thing through when and how to perform them, sometimes even break them down into smaller batches over a whole day, or sometimes even over several days.
And Ohh yes, I had to accept that some tasks I was more concerned with being 100 percent perfect before, will no longer be it, have lowered expectations for my quality standards. Today, it's more about doing it ok ish, rather than doing it perfectly, that's the new standard here. Adjusting my life to a new battery standard has been difficult, I was use to have plenty of battery before, in addition to access to a fast charging station🏃🏻♂️.
All of this has and is for me very difficult to accept, many times I feel embarrassed about who I have become, what I have become. 
This in turn makes it more difficult to interact with the people I used to associate with. In addition, I can no longer work, and along with losing my job, most of the contact points I had with people disappeared, my replenishment of information, knowledge, what is happening in the world, without what is the headlines in the onlins newspapers, I have lost something to talk about, when I am with others, I disappeared, the light went out and I disappeared into the dark night.
Suddenly I wasn't good at anything anymore, I had become useless, I got tired doing even small everyday tasks, I need to rest a lot, take small braks quite ofen, I couldn't focus and concentrate when I was with several people, sometimes I lost track, because I was not able to follow the conversations, or didn't understand what was being said, misunderstood the point, standing looking as a completely stupid..., I was embarrassed by myself, fatigue is a b..., 😁
Do you feel I'm complaining? Im not, if you really know me, you know that I am not the one using time on complaining, I just telling you how my life is today, this is fact as I experience it.
Yes thats right I've gotten a good start on learning to live with it, I have my lists, my good routines that help a me lot to make my everyday life a little easier, thanks to Steve Jobs for the iPhone because without it I would have been completely lost😀.
My everyday life is good, it's not what it was and will never be again, I'm starting to understand and accept it, I'm on the move again. The sorrow over the job and all the good things it brought with it is there and will probably stay for a long time to come, together with the
sadness over the people who chose to disappear from my life, those who felt it was easier to look the other way, believe that their loss is greater than mine. The greatest sadness is losing who I was, but it's the easiest to deal with because I'm well on my way to becoming reasonably happy with the new version of me, that I'm becoming more and more familiar with.
I'm back on my bike, getting out into nature almost everyday, I've found a kind of meaning in life again, working with film and pictures, trying to learn to fly a drone so I can create movies and pictures of the amazing nature around me, which is a big part of what gives me fresh energy, my re-charging place, it's where my soul heals, my mental health station.
I strongly believe in active rehabilitation using the nature surrounding us.
The road here has been long and at times dark, but it has taught me a lot about who I am becoming, who I want to become and I have met some amazing, beautiful, warm and caring people along the way, some who have become part of my new life, those who don't look the other way.
I have a lot to be grateful for in my life, a lot to live for, believe me I am really grateful, but I will not put the bad things under a rock, because knowing, accepting and dare to tel the whole story makes it a hell more easier to be grateful for the good things, to really se them..., embrace them🫶❤️
Living with fatigue often requires lifestyle adjustments to manage symptoms and improve quality of life. There are many good tips and actions that can make living with fatigue easier. Some of the most common tips include:
All the above mentioned things is just right down my alley😁, changing lifestyle, eat healthy, physical activity, routine and planning, try read my blog Jahous.com I started that journey several years ago, so yes I good on my way.
I have learned that living with fatigue after an accident is complicated, but that with increased knowledge of various aids and strategies that I gained during my stay at Sunnaas Hospital🙏, it becomes easier.
Living with fatigue is a long-term and challenging exercise, understanding the symptoms, adapting your "new" lifestyle and learning to deal with fatigue are crucial to improving your quality of life and mastering everyday life.
I have been fortunate to receive professional help through Sunnaas Hospital and the Sunnaas Foundation🫶❤️. Although professionals such as health professionals, doctors, psychologists and physiotherapists can offer you knowledge, treatment and support that helps with living with fatigue, I have found that the best help comes from the network that I have gained through Sunnaas with others who are in a similar situation, Learning and sharing experiences with them is and has been invaluable in giving me the knowledge needed on my journey🫶❤️.
One of the most important things to remember in the process of living with fatigue is that unfortunately there is no quick-fix solution. Living with fatigue is a gradual process that requires patience and continuous effort. By taking small steps and seeking support, I have gradually gained a better understanding of my new life situation and hopefully being able to eventually master living with fatigue.
Fatigue is not an illness that is visible on the outside, it is not an illness that is easy to explain, or to understand, even for those of us who have to learn living with it.
So the next time you see someone who doesn't quite understand what you are saying, seems confused, has difficulty focusing on you, has to retreat because they are tired, that doesn't contact you, or just look or behave differently. Then there may be more to the story than you think, maybe you should reach out and ask, but if you dare to ask, you must show that you are and will be willing to have sincere interest, desire, and patience to listen. Then you may get an answer that surprises you. You might even learn something.❤️
Society talks a lot about inclusion, inclusion is a hype for the time, but when it
comes to people with invisible disabilities, I can't say that I experience much inclusion, I don't want to walk around with a sign that says "I have an invisible disability" I don't want to be treated differently, I want to be included, given an opportunity, be shown respect, get acceptance, I need a little more time, some clear messages and information, but I belive that it doesn't just apply to me but to the majority of us, I want a society where we chooses to see and listen to each other, a society where we dare to contact and ask, because we really want to hear the answer, how are you?, what can I do to help you?..., that's what inclusion means to me. Compassion, Humanity, Caring.🙏❤️
It is so simple... and so difficult!
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