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?

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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.

How do you know?

How do you know if you are recovered? How do you know that you are cured? After 1.5 years, I don’t remember how it is to be well. Actually, I think I have never been well, even before the concussion. For years I suffered from anxiety disorder, I have had depression, I lived my life by doing everything all at once. I might have never actually LIVED a day at a time, even though I believed I did.

Monday was a new day for me. I translated an article from one language to two others. I posted it on the website and on facebook. This is part of my volunteer work on an NGO project that I have been a part of for four years, but for the past months I haven’t been active at all. On Monday I decided to start writing articles as a brain exercise. The results were astonishing!

For the past 5 months I have done NOTHING. I gave up my volunteer work. I have spent my days at home, going for walks, going to the gym, binge watching series, binge reading books, eating, sleeping. Basically what holidays should look like. The only brainy activity I have done was writing articles in my For Equal Rights blog, which forces me to articulate and make sense of my thoughts and ideas. On Monday I translated an article from Spanish, which I am not fluent in, to Portuguese and English. On Tuesday I summarised and analysed data, which I managed to scientifically put together into a coherent article that I published today. I am excited that I managed to do this without feeling anxious, freaked out or with a throbbing headache in the end of it. It wasn’t as hard as it used to be.

Does that mean I am cured? I still think it is too soon to tell. What I learned in the past days is that, yes, I can manage writing an article, but that is on my free time, alone, and at my own accord. If it was a job, where there are expectations, where there are deadlines, my anxiety might have risen, my brain might have blocked, and my head might have been throbbing in pain, ultimately, I would be exhausted from the exercise.

What I learned from this whole experience is that my previous life style bad for my health and that from now on I have to take more control over it. I don’t like the word “control” – I find that it doesn’t let people be free to live – I think I mean more, aware. We need to be more aware, more mindful, not let things get out of hand, listen to your body and make adequate changes.

I am now living stress free, I want to continue to live stress free. But how and when do I get back work, and what work? Should I even work full time? Should I get back to studies? What studies? Should I change my degree, my Master thesis? Something has to change, but what? How do you know when you are recovered and can go back to living a “socially accepted” life of work and studies?

Balance is Delicate

It has nearly passed 5 months since I decided to break myself from all work, volunteer commitments and studies. I realised what this is now – a sabbatical year. Good to have a name for it when new people ask “what do you do?” But how in the hell do you cure a burnout, especially when you have memory issues. It can be quite overwhelming to do it all by yourself, especially when you are incapable to organise stuff in your head. One day at a time.

Eventually I will have the support from a professional that can guide me through it.

One day at a time.

As I look back 5 months, I have no idea what has improved and what has not, because I can’t remember. We all take memory for granted.

One day at a time.

I have to stop thinking, and there is nothing wrong with that. The critique from my incompetent doctor really hit me hard. Her sickening, tired eyes still haunt me. The feeling of hate and anger, still haunts me. She made me question everything I say. And when you have bad memory, you have to trust yourself and the little fragment memories you have to be able to tell a story or relive a memory. She made me think that I was lying and that my problem is psychological. However, I keep here in record, that I have over and over again though that my memory was induced to stress, but even when I am happy and stress free, the memory is still weak. It get’s worse when I am overwhelmed, yes, but the problem is still there. She told me I did a mistake taking this sabbatical, that I should be working. I have to remember the feeling of frustration and the troubling thoughts that I was going to hit the wall, the physical pain, the bowel problems, the headaches, the confusing, the sadness that I experienced while studying, which made me take this decision.

She knows nothing.

She is incompetent.

I have to believe that, even though I do not remember, that the description of my symptoms and feelings that I tell people, is the truth. When you have a bad memory, it is easy for a doctor to drive you insane. You might feel that what you remember is made up and not the reality – and there is no way to know. I was aware of that since the beginning, which is why I trusted every fragment memory I had and have, and so far, they have been correct in other situations which can be proven.

This doctor took me off balance, and that is to show that even though I am trying to put the pieces of my life together, she managed to ruin it all. I need guidance and constant support from someone who know — and someone I can trust. I know I am not depression, I have a burnout, which is different. However, she now makes me question: am I depressed? No. I am not. I know depression, and this is not it. Let this be a reminder to myself in the future, when I question myself again.

If I sound incoherent, if I am repeating myself, it is too a symptom of what I am going through. My brain is tired.

One day at a time.

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.

“Life Happened”

“Life happened”.

Someone told me this at last month’s annual meeting of the board we were both in for an NGO. Her husband wanted a divorce, a few months after their second child was born. She, like me, was not going to re-candidate for the new board, and take care of her self and her life

That stuck with me. “Life happened”. You have plans, you are active in the community, you work, have a career, and then something huge happens. Death, accident, divorce, you name it… “life” – uncontrollable events that happens no matter how you live and what you do. And when such things happen, you stop and reorganise, restart. You can’t continue the way you lived because the basis of your life has changed. But you try, and you hit the wall. You understand that it doesn’t work to live like you did before, something is different.

I want to say that if I could, I would go back in time and not accept my friend’s free ticket to the metal concert in the end of 2013. If I didn’t go, I wouldn’t get this concussion. But I won’t, because it forced me to reorganise my life… even though now it sucks, but I know it will get better.

Things are not good, and that is because I didn’t get the health care when I needed. I am fighting to get specialists on my case, to get the support and tools to live my life, accept my handicap. While my friends spent new years in celebration, I spent mine in a pure anxiety attack and sadness. I promised myself that in 2015 I would focus on getting myself together, and getting medical support (even when they kept sending me home). It is now nearly the end of April, and I have signed myself off from work and university, I spend my days mostly at home and at the gym, waiting… waiting for that damn doctors appointment where they will say “yes, you complains are real and this is what we are going to do about it”. Next week is when I will meet the specialist, and I am afraid. I learned to distrust doctors, because when I most needed after my concussion, they didn’t take me seriously. But I am proud – as much as I am afraid for not being heard again, I will go, and I will talk, and I will fight, and shout to get the medical support that I need.

Life got in my way. However, before my concussion I wasn’t living. The past four months have been of such personal growth. I have had time to determine what is really important and what is not. I am starting to be okay with my working memory malfunction and living my day to day life with it. But I removed all my stressors. How will it be to get back to work? Should I change career? How can I study or work for it? I still do need the cognitive behavioural tools to get back out there. I can’t wait though – I can’t wait for the day when I can go to work and come back home to my loving wife, change lives, see people, see change. Start a new adventure. I want to do so much, I want to live, I want to be out there, I want to do something.

Soon. I am ready. Just lead me the way.

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.