Looking Back

When you live out of context, when you don’t remember where your life is at, it can be useful to take a moment and look back. Even though today you might feel the same as yesterday, you might have gone a long way since the beginning of the year.

This time two years ago, I was having extreme headaches that I would have for months. Little did I know this would cause me to lose my job because of it.

This time last year, my body was in pain due to stress. The headaches were back, I was hopeless, getting extremely depressed, moving on with energy and brain power I did not have to do my Master thesis. “While everyone is running at full speed, I’m trying to run when I still need to first walk.” Suicide was in my mind.

On January 1st 2015 I decided to take a break. I needed to stop this train before it wrecked. “Last night it reminded me how I cannot have another year like this. Crying for no apparent reason, closer to a panic attack, last night was a strange evening. There was nothing to celebrate, my strength is down and I think I have gotten myself into a depression.”

An extremely hard decision to take a break from studies and work, without financial security, without knowing what the future will bring, and seeing all your friends working and being successful. It is terrifying. If I didn’t have a wife and a father who help sustain me, there are high chances that I would have lost everything and ended up in the streets.

I decided then that 2015 would be a year of recovery, and yet it became a year looking for recovery. I spend this whole year going from doctors to doctors to get 1) help with financial help and 2) get me in a rehabilitation program.

In February I saw a neuropsychologist that told me I had a burnout. In April an incompetent doctor told me that my cognitive difficulties were due to depression – from 5 minutes of talking. In November a team of brain trauma physicians told me I have brain fog and recommended me to be in a rehabilitation program.

2015 was a year full of emotional ups and downs. Sometimes you get hope sometimes you are hopeless. A year of patience and learning. I realised that you cannot get everything the day after. I understood that society doesn’t work this way – everything takes time. A lot of time. It’s a learning curve.

From where I stand, there is a lot of improvements since the beginning of the year. I have started to be more involved in cooking, using calendars and reminders, allowing myself to relax and be okay with doing nothing. Best of all, I have started to learn to say “no” to people and requests. I still have things to learn and behaviours to change, but all in due time.

So here I sit, sipping some tea, feeling a bit anxious, thinking about what next year will hold. Contemplating if I should give up the social system that never gave me any support but stress, and simply be a freelancer or start a small company. Or should I wait and get in the system?

Will next year be a year in which I will recover, a year in which I will start working or get back to school? Does it go uphill from here?


Hypermobility, Brain, Stress and Sports

A few years ago I came to the conclusion that I had to work out for life. First it was because of my knee, which without good muscle support could dislocate. Then because of my brain fatigue, as working out helps me think clearer and release adrenaline from my anxiety. And now I have to work out because of my hypermobility, which I got diagnosed today, as to strengthen the muscles around my joints.

The past few months have been a hell for me. I spent the whole year dealing with issues of acceptance for my condition, figuring out what to do next, and feeling like social care system doesn’t care about me because I don’t have a clear visible condition. But exercise helped a lot.

It was around February that I decided to get serious with exercise again: around 3-6 hours of gym per week including aerobics (cycling, running) and muscle building. Around September I decided to volunteer with welcoming refugees arriving in Southern Sweden. That is when hell started, because all of a sudden I was exposed to many different pathogens from different countries and I also stopped going to the gym so religiously, as I got tired from other activities.

Since September I have been dealing with increased anxiety, as well as my terrible immune system not being able to fight away common viruses. I spent many days on bed rest, and the cycles just got worst and worst. The past two weeks I got a lot of pain on my shoulders, because I have been spending a lot of time on the computer in terrible unrecommended sitting (and lying) positions, ultimately causing me to have shoulder subluxation.

It seems that all is connected. There are indications that “direct and indirect evidence links hypermobility to anxiety and stress-sensitive medical disorders.” – Eccles, et al (2012). It seems that working out is what makes my body function correctly and what I have to prioritise in my rehabilitation and “life after brain fatigue”.

We are a product of our ancestor’s survival. They survived thanks to being able to hunt, forage and build shelter. We are not made to sit in front of the computer, type on machines, sit around all day at home or in the office. We are not made to be static, no wonder sports and working out in general has a big effect on the body, immune system and brain.

How to survive Christmas?

The holiday season is around the corner. It is a stressful season, and even more overwhelming when your brain does not function right. How does one survive the holidays? I guess the key is to take a day at a time, make lists, prepare and remember to take breaks.

My family is small, so we take our time opening gifts, one by one. One of my current stresses is what am I going to give to my family. What do they need? What do I usually give them? Going from store to store looking for inspiration is exhausting and overwhelming. There is too much noise and people around.

Christmas days tend to be intense as well. So much to do in such little time, it makes you think that there will be no time to rest. Sure you can go away for a few minutes, but will you really be able to rest?

I think too much, that is my problem. Brain fatigue and generalised anxiety disorder do not go well hand in hand.

If I don’t find many gifts, then my family will understand. If I need to rest for 3 hours, they will also understand. Christmas traditions are beautiful, and having the family together is nice. This season is one of my favourites, but since I got this condition, it has been an anxious and stressful season.

This year my wife and I are also going abroad, so I will not have the comfort of my home, where I spend 98% of my time. Routines and familiar surroundings are extremely important for me, it’s how I check-in on myself; I know what works and doesn’t work, and I know what are the warning signs. When I am in a different surrounding, different people and food, I get confused. It is a lot of new impressions.

So, I have to remind myself to..

  1. Take a day at a time. If that is too hard, take an hour at a time. As we gets closer to Christmas and traveling abroad, I need to not allow it become so overwhelming. Traveling is pretty simple, being at my parent’s house should go just fine. It is nothing extraordinary. Stay in the moment, and when Christmas arrives we can take it then.
  2. Make lists and prepare. The past weeks I have really planned my life with my iPhone with reminders, alarms, calendar, shopping lists, pinterest. It has really helped me a lot to keep it cool and not feel like I am forgetting something. Even though I hate being so dependent on a hackable device that is so dependent on energy and internet, it is the best thing for me at the moment.
  3. Take breaks. I always forget to take breaks. ALWAYS. I am so used to “I can do it just a little longer”. It is great mentality when working out, but a terrible mentality when recovering from brain fatigue. No, you cannot “just do it a little longer”. Worst is when you start thinking “my brain is starting to hurt, but I am having fun”. The recovery time takes longer, your head will hurt, and nothing ends up being done for the day or week if you exert yourself like that. Is there an app to remind you to take mindful breaks?

How are you preparing yourself for these holidays?

Brain Damage Through Chronic Stress

Chronic stress has the ability to flip a switch in stem cells that turns them into a type of cell that inhibits connections to the prefrontal cortex, which would improve learning and memory, but lays down durable scaffolding linked to anxiety, depression, and post-traumatic stress disorder. – Christopher Bergland, Psychology Today

The brain is fascinating. While I thought it was more like a muscle – the more practice the better – the brain is more like an adaptive machine that adapts itself to whatever situation you are met during your lifetime. In this case the more stress you have, the brain will adapt itself to become optimal to deal with fight or flight situations: learning and memory is not as important in this case.

That said, the structure of your brain is constantly undergoing changes through plasticity. Mindset, behavior, and chronic stress are never fixed. The power of neuroplasticity makes it possible to change brain structure and function throughout your lifespan. You can consciously make daily choices of mindset and behavior that will improve the structure and connectivity of your brain. – Christopher Bergland, Psychology Today

I have been diagnosed with generalised anxiety disorder, but not much has been done to help me manage it. Instead I spent 5 years taking antidepressants on and off – it helps as an emergency tool to deal with your issues and continue to live the life you live. However, because doctors didn’t make sure I saw a psychologist or psychiatrist during this time, I continued developing this behaviour, habits and making poor unhealthy decisions which got me to burn out.

Now that I am forced to take a step back from society, spend my days contemplating and taking it easy, I do not understand how I managed to survive the stress I created to myself. I was adding more and more projects, extra classes, making myself responsible for my alcoholic mother’s wellbeing, trying to save the world from climate change, being an activist on human rights, and so forth. In the middle of all this a close family member passed unexpectedly, which triggered a whole set of other emotions. Apparently I have a harder time than others to deal with death.

I do not understand how I managed to survive all this stress. The truth is – I didn’t. My brain gave up. All this time my body was telling me over and over again to stop this nonsense. I had panic attacks, irregular heart beats, nausea, insomnia, indigestions and all other sorts of issues. I didn’t listen, so my brain gave up.

Was it all worth it? Yes.

I’ve had anxiety since I can remember. I have always been ambitions and wanting to prove others how amazing and smart I am (a terrible habit that still persists today). I have made many social projects, worked with different NGO’s, I am been in boards, I have been a volunteer in amazing actions… I have lived every day as if it was my last. That’s why it was worth it.

I was stupid and naive to not taking care of my body and mind, that is for sure. But thinking that none was it was worth it is an unhealthy state of mind. It is what it is, and here I am. With some sort of brain damage, trying to figure myself out, my new boundaries. Without this happening now, I would never have stopped to smell the roses. I would have continued on that super speed train, because I thought I was superman.

I have come the conclusion that if you do not have time to cook, sleep, work out and take a break, you are living beyond your capacities. Just like when we have no other planet to go to, when this planet is out of natural resources due to our irresponsible acts, we have no other brain to use. In fact, while any other organs and limbs can be substituted or reconstructed, our brain can’t.

As I walk down the streets and see people rushing back and forth, phone in their hands, shopping for Christmas presents, do they know the damage they are doing to their brain? Do they know what happens when you burn out? How useless you feel? How handicap you feel? It makes me wonder, how do people live mindfully, calmly, and in tune with themselves, in a world so hectic and stressful? How am I ever going to reach that point, when I have so well mastered the “normal” and “acceptable” way of living?

I have lived 25% of my life in stress and anxiety, if I do live to be 100 years old, then let the other 75% of my life be healthy and mindful.

The Diagnosis

Nearly 2 years since my life changed, I finally got a diagnosis: brain fatigue, (in Swedish hjärntrötthet). People get this condition from stroke, concussion, long term stress, lack of oxygen in the brain, amongst others.

They are not sure if my condition was caused by the concussion that day – as I did not lose consciousness and there are no other visible physical brain damage – or long term stress, or a combination of both. It doesn’t matter anymore.

Doctors have listened and evaluated me. They tested my balance, strength cognitive abilities, logic, memory and listen while I tried to explain what I do on a day-to-day basis, what is difficult and what is easy. The team then discussed amongst themselves and gave me a report of their findings and recommendations. For the sake of helping others, my invisible condition leads to:

  • Lack of brain energy
  • Slow mental capacity
  • Low learning ability
  • Low working memory
  • Sound and light sensitivity
  • Headaches
  • Stress sensitivity

They have now sent their recommendations to the local health clinic so that I can meet an occupational therapist who will help me find ways to adapt my life to my new brain, a psychologist to help me understand and accept my new brain, and a doctor to help get the income I need from the social security by giving me 6 months or a year off for my rehabilitation.

The thing with invisible conditions like mine is that no one knows what you are going through unless they are going through it. I hear often “yes, but everyone forgets this and that”, “well, I also get overwhelmed when cooking”, as if undermining my difficulties. It gets to a point that I don’t talk about it anymore and just pretend that everything is easy and fine.

Then there are those that forget you have this condition. I am currently going through a tough time having an overview over my life, figuring out which inner jokes are connected to which people, past experiences and connecting them to people and situations. It would a lot easier to receive verification that what I did was correct or wrong.

I have been told that I fall in the autism spectrum, so what I do is mimic in social situations, learn what I should say and not say, understand social interaction and try to master it. Now, if I don’t remember, I say awkward things, create strange situations, which I later forget as well, and end up making it more awkward later in the future. In the end I just avoid people, because social situations are now extremely difficult and stressful.

Hopefully I will soon learn new strategies, learn to love my new brain, master the life of zen and mindfulness, and be happier than most people who are stressing themselves to death. You gotta make them lemonades, am I right?

The Evaluation Begins

I started this blog to write about my adventures with post-concussion syndrome. I haven’t written much because there is not much to say. It is soon two years since the concussion, and my battle for treatment has been pretty much uphill. This week – finally – I have started my head trauma evaluation, as to figure out the extent of the damage and what rehabilitation should help to get back to the real world.

It is amazing the feeling when a doctor telling you that yes, what you are experiencing is due to a concussion and not stress. That my symptoms coincide with what other people with concussions have experienced, and there is a way to live with it. Worst is that they told me that most people take 4 years of seeing different doctors and psychiatrists until receiving the right treatment.

It is strange to be here right now. I realised, as I met the psychologist this week, that I am living in an odd reality. As she read the notes from our previous meeting in April, I came to realise that a lot of my complains today, which I thought were new, are the same as my complains in April. It is scary when the doctor actually tells you on the spot that my memory capacity is in fact not good at all after doing some neuropsychological test. Or even more when another doctor tells me that she understood that I didn’t recognise her at first (having met her briefly 10 mins before). Worst is when the third doctor repeatedly tests my feelings on my left and right legs, arms and hands with feathers, pens and needles, and actually realising that I feel more on one side than the other.

I have another week of evaluation and then I will know how my rehabilitation will look like. I don’t want to be sent home and be told that it will pass in a few weeks, that my complains are because of stress, and that I am just need rest. It has been two years of living in the moment, reading books and series just to pass the time but not really following the story, waiting for something and yet nothing, a miracle of some sort, maybe waking up and continuing my life.

My life and ambitions are on stand-by. It sucks really.

On the Bright Side

This memory loss problem that I have can sometimes be quite advantageous. It forces you to live in the moment. If that moment was painful or uncomfortable, I can relax and wait until I forget. I know something happened, but I am not obsessing over it as I once did. It is basically easier to move on. Also I tend to trust my gut feeling a little more, and the gut feeling usually is right. This was profound while talking to my partner about football, and I am not a major football fanatic, though I know some stuff. She told me a player has been bought, and then she tested me: in what position does he play? My first thought was goalie. In a split second I doubted myself but it turned out to be correct. My memory is still there, it is simply harder to reach.

I find that memory is often based on associations. You know the oven gets hot because you associate it with “burn”. You know that if a plant pot is dry it needs water. You know that if it hurts just above your eyes, you are tired. Sometimes I miss the associations because my brain doesn’t make them. Take sleep for instance: I haven’t slept properly for days because of the heat wave in Europe. However, I forget. Usually when I sleep little my body is tired and I need to preserve energy a little better. But when I forget that I slept little, I do everything that I would normally do. This has led me to have heart palpitations, chest pressure, migraines and brain fatigue (ie. harder to write articles or make sense of what I read). I tend to over exceed, when I shouldn’t.

When something happens to you that changes everything, it is good to evaluate the damage and access how it affects you. I might not be able to do many things all at once, which was something I was good at, but at leas I am not constantly obsessing about certain things. If I remember this correctly, I asked my psychologist to teach me how to be and how to manage my behaviour. I do not know how to deal with stress because I can’t remember it. As I can’t remember what I learned from experience – like the little tricks or identifying triggers – I am unable to apply them now, which makes me more vulnerable to stress. She told me that because I have a burnout whatever “tricks” or whatever I knew before, wasn’t good enough in the first place. So, on the bright side, I get to create new behaviours.

Knowing your handicap and living with it is tough, but it will eventually happen. From this blog I can see that in the beginning of this year I was extremely upset, unable to grasp what just happened to me. Now I see a future but I am waiting until I was mentally healthy to pursue it. However, nothing is perfect, and there are still bad days. Either way, it is important to know that this whole experience is a roller coaster. Sometimes life happens, and you just have to go along with it.

Note that I am unable to read all this and make sense of it. This will therefore be published without proof reading.