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.

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Incompetent Doctors

Depression. My general family doctor said that my problem is depression. She said that during that day in the concert, I was very sensitive and my memory problem is psychological. Needless to say, for someone who has had depression before, and the memory problem I have now has nothing to do with what you get during depression, I argued with her. And I lost, because she said that she would not help me unless I get this “concussion story” away and gone.

It has been 1 year and 4 months since I got elbowed in the head and head-banged. I have been going from doctor to doctor who has sent me home and saying that my complains will vanish eventually – and they haven’t. Earlier this year I met a neuropsychologist that evaluated me and concluded that 1) I do have problem with my working memory and 2) I have a burnout. This general family doctor ignored this diagnosis, and determined instead that it is depression. She then prescribed me anti-depressants, which, funny enough, causes memory loss as a side effect. FYI, when I got hit in the head, I was taking that same anti-depressants and got off it in September 2014. It did not help with my memory then, it will not help now.

When I got home I got this range I think I have never experienced before. Anger above anger due to the incompetence of this doctor that threatened and undermined me, diagnosed me based on three symptoms and not on the history of symptoms I had back then. Furthermore, treating me like a liar, and diagnosing me on the spot when she has no experience in psychology, assuming – not asking – what I am feeling or felt and what I do on my days. There is no way in medicine that you go to a concert, have extreme emotion of happiness and wake up the next day with a major headache, trouble speaking, memory loss, and concentration problems. Neither would it cause change in personality, tastes, and ideals. After those exhausting 30 minutes to 1 hours of shouting, swearing and leading me to have range induced anxiety attack, I went to bed.

The advantage of memory loss is that the incidents of the past are blurry. The conversation with my doctor is blurry, I don’t remember what exactly has been said, as well as my shouting and swearing at home with my wife. I don’t remember her face, but thinking “she is not happy to see me, and she looks like she has not slept”. I, however, felt a sense of calm and feeling free. Weird, I know. I have worked my ass off through doctors to doctors, just to realise today, that in the end I am better off by myself. I might not get financial help from the state, but my wife works, so that helps to pay the bills. The brain is a muscle, or rather, a very complex network of neurons. To rehabilitate your brain, may it be from whatever (I don’t care about my diagnosis anymore), it is about:

  • Nutrition, healthy food, no sugar, no alcohol, no smoking;
  • Exercise to bring oxygen and blood circulating around the body, and creating a good environment for new neuron connection;
  • Re-evaluation of your energy levels. As I get tired faster with activities I assume (I don’t remember) I used to have more energy doing. Thus determine what activities take up more energy and how to reload the energy between the activities. Basically, understanding your new limits. For instance, late night partying does not work for me anymore. Socialising with a huge group of overly enthusiastic talkers can be a bit hard for me.
  • Accepting the new reality of the situation.
  • Adapting to the current situation: how to live with a blurry memory?

I feel like I have been cheated, and yet I feel empowered. All this time I felt I need experts to tell me what to do. Don’t get me wrong, I got some great advice from those specialists that have evaluated my current condition, and I’ve got basic knowledge of human biology. In the end, all recovery success stories sound similar as my points of focus. Of course yoga, meditation, compassion and Nature should go into the mix. Nothing like trees swigging to the wind and birds singing to make your stress levels down.

And before I forget (I don’t think I have mentioned it before) I have been accepted to a head trauma rehabilitation program, but due to queues, I will only be able to start after the summer.

An Invisible Illness

Inactivity due to soul searching. I have done a neuropsychological examination, and got the results that my working memory is significantly worse compared with the rest of my intellectual capacity. I also have a burnout. Her recommendation is get into a post-concussion rehabilitation program and meet a neuropsychologist to help me deal with stress with cognitive behavioural therapy and learning to accept my situation. She highly recommended me to stop working and studying due to my inability to deal with stressors which has lead me to suffer chronic pain around my body.

The past three months have been spent with learning to accept my situation – by myself. I have been going to the gym 4-times a week, trying to eat well, getting my sleep pattern back in order, reading a lot of books like I have never before and watching a whole load of series. I do have a tendency to avoiding facing the truth, and the truth seems to be that I am screwed.

I have proof that I have a burnout and crappy working memory due to my concussion – yet, as I call my family doctor to explain the recommendations, she didn’t take it seriously. The unprofessionalism of these Swedish doctors is frustrating, and I do understand why Sweden has a high rate of suicide. Since my concussion I lost my job because I had excessive headaches, I therefore came back to studies but left it after months of physical pain due to stress, and in the end of the year, I have contemplated suicide because I had no help and no one took me seriously.

The problem with “invisible” illnesses like mine is that there is no proof. There is nothing to show in the MRI or x-ray, and therefore, it is not there. Only one doctor took me seriously but I had to pay 1000€ to get it, and that is the doctor that did my neuropsychological evaluation, the same that recommended me to stop working and studying and instead start focusing on myself, change my habits, and rehabilitate my working memory. And the problem with burnouts it that “stress” is not taken seriously either, because it has become the norm to feel stress, be stressed and have a stressful life.

Even though I have no official paper saying that I should not work or study, I stopped working and studying. I have no income. If I didn’t have a loving working wife and a father who at times offers a generous allowance, I would be like any other homeless person in the streets. This is because doctors have not taken me seriously, and therefore I cannot get the social funding to buy food and pay the rent. The system doesn’t work. The “progressive” Sweden does not exist anymore.

People with post-concussion syndromes are not taken seriously, especially those that got a mild head trauma, not bloody enough to be medically relevant. They are not taken care of, and they end up living their life like any other, ending up damaging themselves more. That is a problem and the medical community has to do something about it.

The Cure

For someone who has always done something, doing nothing is hard. As I sit here, being somewhat lazy, when in fact it is not laziness but dysfunctional, or rather, broken. This kind of mentality is what got me here in the first place. The belief that even when you are sick, you have to show your worth – in fact, it is then that you have to show your strength. God forbid you showing any weakness!

I sit here, considering my forced holidays, the gap on my cv, staying behind as my friends and colleagues show their worth, become successful, and even travel around the world to volunteer. I sit here feeling useless, yet, I am useless due to this kind of mentality that overdrove my brain. I am not weak, I am not lazy, I am not stupid. I am in fact sick. I don’t have an infection, I don’t have broken legs, I don’t have a virus – there is no physical appearance of my sickness, even though I sometimes wish there was.

Accepting this sickness, or syndrome, or psychological whatnot, is much more difficult than accepting an amputation. No one sees it, no one know what you are experiencing other than believing in what you say. Some don’t even believe you. You are in fact all alone. Even though you read in the newspaper that millions of people experience burnout, that it is becoming very common, it is serious, yet not many people believe it is – which makes it even a more serious situation.

As I sit here, contemplating about my life, what I have done and have yet to do, I hope that one day I am recovered. I can honestly say that I do not remember how it is to live without this burnout, but I remember that it is not what I am feeling now. The cure of my condition lies on accepting that I do not need to prove myself, not to myself or others. It is easier said than done. Once you accept that gap on your cv and that your friends and colleagues are showing their worth, only then are you free. Changing this mentality, that has been wired into you since you are little it difficult. I don’t know what is the alternative thinking to having a successful career, I have always been to do breakthrough scientific research and nothing less, as well as helping future generations through environmental and human rights activism. I don’t know any other way of living, but I know that putting all this responsibility on my shoulders, the responsibility of other people’s lives and our future, the impossible possible goal of being the best in my field, is too much, and the wrong way to think and to live. It is this that has lead me to my current situation in which 1) I do not have the brain capacity to cook, let alone to research 2) I am unable to help anyone, as I am having a hard time taking care of myself.

Trying to do everything at once, everything I like, can most certainly kill me. I know of that my great-grandfather, a teacher, died young from post-traumatic stress, which lead to a stomach ulcer, after he heroically saved people from a horrible train wreck in the 1920s or 1930s. But he didn’t get a medal. He didn’t get recognition – that I know of. He was simply a citizen, who came to help when help was needed. I have spent the last 6 years working my ass off to get good grades, be a good professional, and even have time to work in at least two NGO’s in my spare time. What for? Just to fall into this mess, lose my job, and friends are not so accessible anymore as I am unable to party.

So what is the alternative way of living? That is the key question to my recovery.

1 year, 2 months, 10 days later…

…someone took my symptoms seriously.

I have done a one day and a half evaluation with a neuropsychologist, and will receive an answer in three weeks time. The preliminary results indicate a total burnout. As my neuropsychologist explained, my brain is in sleep mode all the time, instead of being in sleep mode only at night. I have to immediately stop working or studying (which I did already mid-January).

My understanding is that by continue working after my concussion, I have strained my brain, and overworked. I worked 50% of the time last year from January to April, and yet I did the 100% of the work. Other than that, I continued being active in ideal projects. Business as usual. I spent last year straining my brain, working and studying, and now my whole body has been reacting. It might not be post concussion syndrome as I thought. Furthermore, it might be a two-year sick leave to recuperate. I spent the last 10 years working my ass off to get good grades, give my best to any job I have, as well as giving back to the community, only to be forced to do absolutely nothing for two years. Either way, I have to wait for the results and recommendations by the neuropsychologist.

Happiness through Compassion

If there is one word that keeps coming back is compassion.

As my birthday is coming up, in which I will celebrate 26 years of age, I will have to face the fact that choices have to be made, responsibilities have to be faced. We all wanted to be grown ups when we were children, yet once we reach of age and understand the million of difficulties around the world (war, hate, diseases, unfairness, poverty, racism, sexism, fascism, and so forth), we want to come back and be a child again.

Like anyone who has lived more than 25 years, you start contemplating about what you have achieved so far. Sometimes blinded by things like power, success and career, you forget about our human essence, what truly makes us happy. I might not be rich or have a hardcore career path – in fact, I had the dream to win a nobel price, and I would have, if I did not endure the unfortunate events of having an alcoholic mother, the death of my grandmother and more recently, a concussion. But there is an internal war between success and what I have started to become passionate about. The priority became less about me, and more about others.

We are all taught, at a young age, that we have to exceed in school, in university and in our career. We have to get married, travel to amazing places, have children and raise them well. All these expectations have caused a generation of stressful greedy idiots, blinded by material things and imaginary successes. However, the core of our existence exists with love. This word has been used and abused, and I generality do not like words that have been used and abused. I am not a romantic person, I thing valentines day is idiotic and I barf at romantic movies. However, love is the only word than can describe the essence of a human being. Children die without affection and care, their immune system becomes worse, bullying leads to suicide, isolation leads to poorer health, hugs improve your health. We are social animals, and yet, we lead ourselves in individualistic paths, to reach our individualistic goals, which in the end will make us miserable. This is my theory in why religion exists and persists.

During my toughest times I have met people who were completely selfless. They have given me things that I never thought I deserved. When everything seems lost, compassion is what warms my insides and brings me back to do what I always wanted to do: Change the World. It used to be about wanting recognition for my work (ie. Nobel Price), it used to be about wanting others to look up to me, to see me and I have to say that priorities changed. It is not about me anymore. There are people out there who have a harder time, that do not have the chance of free will.

I’ve had a few months of self loathing, angry towards my brain not functioning as it used to, angry to not be happy, or thankful for this condition. But during my hardest moments, compassion is what helped me back. To think with your heart than your brain, to give your brain a rest and let the heart do the talking. The warmth it brings when someone thanks you for your kindness. Compassion is the answer to happiness.

PCS Meets Depression

Dr. Michael O’Brien, director of the sports concussion clinic at Boston Children’s Hospital, pointed out that “it’s really good for people to know — those who are suffering with school performance, physical performance and even social issues — the fact that there is actual structural damage, even a year after the injury.” – webmd

After a very relaxing and enjoyable holiday, back in university for two days was like pushing away a carpet from under my feet. A fall to the floor, so hard, I do not know what to do. I keep wondering if it is at all wise to come back fully to my studies, as I have since September, if it is in fact a good idea to finish my degree at this moment. Yet, without the care from the system that I should have gotten, I am not aware what I should or not do, what is actually the problem and what is the best action.

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