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?

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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.

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.