Caro crushes the concussion

Het is dinsdag. Volgens mij. Een uur of 2, zegt mijn telefoon als mijn zus belt. Hoe het met me gaat? “Ja, nee, goed hoor. Nee, ja prima. Komt wel goed. Ècht.” Gelukkig maar, zegt ze, fijn om te horen. Ze waren echt bezorgd. Ik hang op. Ik doe mijn oordoppen in, slaapmasker op, ga terug naar bed. Opgerold in foetushouding onder de dekens omarm ik mijn eigen knieën en doe m'n ogen dicht. Weg. Fijn dat mijn zus gerustgesteld is.

My concussion joined my life the 11th of March. Internally I've been ironically celebrating every monthly anniversary of our togetherness. We've grown so much together. After two months and a half of doing absolutely nothing that related to my pre-concussion lifestyle, I was allowed to start my recovery plan. The recovery plan consists of some goals that you want to be able to achieve, and the steps towards that goal.

If my goal is to work a 40 hour week at the office (yes, that is one of my goals, I love my job and the office), you need to cut that up into smol little pieces to make a sort of 'piramid-like' stair step ladder to your goal. The concussed brain has to reconnect itself to be able to go into such a sensory rich environment again. If I would start at one hour of work at the office, I would probably have an insane relapse the day after. The sensory input of people talking around you, people talking to me, the trip to the office, the usage of the laptop, the reading of difficult content, the calls to make with clients, the unexpected issues during a day.. my brain would immediately go into system overload. So we cut it up.

The first stair step I conquered was reading a novel for 15 minutes. Then, once that went down without additional symptoms, I could extend the time I read. After that I unlocked the next level to more complex materials, in my case, IT law focused materials starting with only 15 minutes again. And so on, and so forth. You get the jist of it. The same goes for any social goals (to me that's going to a festival, first step: talking to one person for 30 minutes), or sport ones (playing a basketbal game, first step: walking for 20 minutes).

This new step has to go well for at least 3 days in a row to make your way up the ladder to the next step. Why, you ask? Because when you do something that might have been a too big of a strain for the brain, the brain will only tell you later. She's kind of passive aggressive like that. So if I did too much, sometimes I'd feel it the day after by insane headaches greeting me in the morning, but it might even be after two or three days. This is because I would slowly take a bit too much of my cognitive energy every day and when it's at -10, then the relapse hits. Which means not being able to cope with sounds, light, pounding headaches, general exhaustion and malaise, and other lovely companions.

I started my recovery plan about four weeks ago. I was SUPER excited. As with most things I start in my life, I want to do it well, and hopefully the best possible: no half measures. I absorb the information relevant, analyze and process it to my situation, and think of a solid game plan. I thought if I played this well, and in the most efficient way, I can be out and about as quickly as possible. I decided to take a different (work/social/sport) step every day, and in that way be able to recover “parallel” on every goal. Efficiency is key. Let's fucking go.

That enthusiastic approach lasted for two weeks. I was doing quite well. I was running the one day, and as a “rest” day I would cycle for over an hour on my racing bike. All the while I was also taking social steps: having friends over for 30 to 45 minutes, and after a while even going to a terrace (alone and with my parents) and out for a walk and ice cream with a mate. With working I started at 3 times 15 minutes, and after every 3 days I wanted to up that with 5 minutes. So within a week I was at 3 times 25 minutes. As a non concussed person you might think: ok lady this is nothing, but I was definitely pushing it. Head over heels with finally feeling well, and being able to actively do something about the situation I was in, I attacked this recovery like a shark. I ended in a two week long relapse topped of with a migraine attack. No fun. No efficiency. Mentally fucking drained and depressed too.

Since last Tuesday (that's almost a week now), things are looking up, and I am looking back. Looking back at the signals I missed that indicated a relapse incoming. I honestly believed that I was following the recovery rules as indicated, checking in with myself, and “taking it slow”. But apparently I still overlooked something, and was too quick to fly up my step-ladder. Looking back I realized that I had been tired a few days in a row in the evening, exhausted actually, but did not think much of it. In pre-concussion life exhaustion happens, you sleep, and then you're fine. I also started to be annoyed by the sound of birds, or any sound people made for that matter, and felt like I did not feel like cycling (although I'm quite an active person), but I did it because I wanted to keep my ''fit'' streak running of running-cycling-running. I was doing so well I wanted to be better on social front too. I wanted to so badly, that I did not think anymore about what I felt able to do, but what I wanted to be able to do.

''Hoogmoed komt voor de val” is a saying in Dutch. It doesn't really do it justice, but it roughly translates to “The fall is preceded by self-overestimation of courage”. I was so focused on getting better, so focused on that end goal, that I was not in check with myself anymore and I didn't even know it. How you recover or grow when it comes to sports, or muscles, or bodily issues not connected to the brain, is pushing yourself. Remaining consistent, not giving up, pushing through. If you set your plan to do something every day, every other day, just – literally – do that. And then you'll grow. And that is what I know and what I tried to do. Almost automatically.

Contrary to muscles and cardio matters, with matters of the brain growth happens when I stay just a little below my limit. Then my abilities expand and I grow. I notice it in reading. If I stayed below my limit and avoid any symptoms (which would occur at 25 minutes) and read for 15 minutes, the week after I could easily extend that. But I love grabbing a challenge by the horns: enthusiastically and a bit frantically I focussed on how to get through my recovery gameplan in the most efficient way possible so I can grow fast. But this relapse showed my I need to refocused to a more relaxed approach. If I am patient and do tomorrow, what I feel able to do today, I'll grow faster.

So instead of getting through this recovery in the most “efficient” way possible to be back on my feet as quickly as possible, I'll approach it differently from now on. I want to get through the recovery with as little relapses, as little complaints as possible. I'll do this by doing just a bit under my limit – and trusting that my brain and body will grow nonetheless. I will rather take it slow, slower than necessary, then want to recover as “efficient” as possible to have a quick recovery, and risk diving back into relapse for weeks.

Even though I cannot see how this process will unfold, does not mean that it will not be succesful.

Explain first week and struggle of “taking it easy” . Bullocks, taking it easy. Every concussion crusher falls in the first few weeks the hardest because they do not fecking understand what “taking it easy” means.

The meaning of taking it easy: cognitive rest

Shifting your perspective on activities. So what can I do?

Hard blows blow hard, but slow recoveries are bittersweet.

This blog contains posts (possibly later podcast episodes of 5 minutes) about my personal experience and knowledge gained about, no shit, concussions and the struggle of recovery. Firstly for myself to vent, but secondly – definitely – also for people with concussions who needs someone to relate to.

Three months ago, the 11th of March, I got a concussion and the struggle has been fecking real ever since. I wasn’t knocked out long, I even finished the game (although I might’ve been caught out of bounds asking for the ball), so supposedly it shouldn’t last that’s long. HAHA, sucks to be me. Now, the 16th of June, I’m almost 4 months in and still far away from my normal life and capacities.

Ever since it happened and I was able to look at screens again (screens are the devil) I have been looking all over for information on concussions or experience and have never felt so alone in a process. There is so little and it’s so difficult to figure out. Long ass articles and theories and interviews or thick books of 500 pages.. I couldn’t even read for more then 10 minutes in the first week and I had no idea what was going on. The GP just told me to “take it easy” and sent me away, but never explained what the hell was going on in my brain why I was feeling so weird. and fuzzy.

And that was only the beginning, after two weeks of ''taking it easy'' a dinner with some friends, a walk with a mate and watching a basketball game tipped me over the edge. It brought me down deep into a very nasty cave of symptoms, I couldn't even take care of myself. Pounding headaches to the maximum, tiredness, weakness, general overal complete bodily malaise, not being able to bear any sound or light, not being able to speak without my head proper bursting. And it took weeks and weeks for that to die down and me to be able to get up without clapping my hands over my head because of the sick headaches.

In all that period I felt alone, I did not understand a thing and I was afraid too. Because there was very little to find on headaches, and mostly I was looking for people who went through the same thing I did. Because by then I knew any (solid) medical explanation was hard to find.

I think information with this digital age should be way more available. We have so many means to inform and share, why was it so difficult for me to find information and fellow concussioned ones?

Well, there is a lot unknown, and even more so, a lot of stuff that’s written is written in loooooong ass literature that that concussed brain cannot cope with at all. Also, as I said before, screens are the devil, as I’ve been saying for three months now, so doing rigorous research is out of the question.

That could be done differently. So why not do it myself? The moment another one of my basketbal teammates got a concussion whilst I was and am still recovering she told me how nice it was for her to listen to advice and experience. Unfortunately for me I don’t feel like I can open up as much as it might make her fecking depressed to hear my own agony, so I'll just have to vent – maybe like this.

Even if I have only one person following my posts that would already be one extra concussioned one that doesn’t feel alone, but supported and ignited to go for recovery. And maybe, in the best of cases, if there’s more attention towards concussions, someone will throw some money at research finally because we should be fucking able by now to figure out what’s wrong with concussed people I mean come on, we can cure anything..

The struggle is not as much the pain and the symptoms, but the not knowing how severe, how long, what you can or can’t do, when it’ll get better, what you need to do to get better, and no one, not even neurologists, giving you any proper directed advice. “Everyone is different.”

While that’s true, I can share my story, and hope it helps others. I’ll make them short, 5 minutes reading or listening time, relaxed, in a slow voice, in a quiet environment, so it’s doable to listen or read for new concushioned people. Better yet, so it's doable for me to write these things. Tips tricks and information is more than welcome.

Let’s crush this.

Hard blows blow hard, but slow recoveries are bittersweet.

This blog contains posts (possibly later podcast episodes of 5 minutes) about my personal experience and knowledge gained about, no shit, concussions and the struggle of recovery. Firstly for myself to vent, but secondly – definitely – also for people with concussions who needs someone to relate to.

Three months ago, the 11th of March, I got a concussion and the struggle has been fecking real ever since. I wasn’t knocked out long, I even finished the game (although I might’ve been caught out of bounds asking for the ball), so supposedly it shouldn’t last that’s long. HAHA, sucks to be me. Now, the 16th of June, I’m almost 4 months in and still far away from my normal life and capacities.

Ever since it happened and I was able to look at screens again (screens are the devil) I have been looking all over for information on concussions or experience and have never felt so alone in a process. There is so little and it’s so difficult to figure out. Long ass articles and theories and interviews or thick books of 500 pages.. I couldn’t even read for more then 10 minutes in the first week and I had no idea what was going on. The GP just told me to “take it easy” and sent me away, but never explained what the hell was going on in my brain why I was feeling so weird. and fuzzy.

And that was only the beginning, after two weeks of ''taking it easy'' a dinner with some friends, a walk with a mate and watching a basketball game tipped me over the edge. It brought me down deep into a very nasty cave of symptoms, I couldn't even take care of myself. Pounding headaches to the maximum, tiredness, weakness, general overal complete bodily malaise, not being able to bear any sound or light, not being able to speak without my head proper bursting. And it took weeks and weeks for that to die down and me to be able to get up without clapping my hands over my head because of the sick headaches.

In all that period I felt alone, I did not understand a thing and I was afraid too. Because there was very little to find on headaches, and mostly I was looking for people who went through the same thing I did. Because by then I knew any (solid) medical explanation was hard to find.

This should change. The moment another one of my basketbal teammates got a concussion whilst I was and am still recovering she told me how nice it was for her to listen to advice and experience. Unfortunately for me I don’t feel like I can open up as much as it might make her fecking depressed to hear my own agony.

Nonetheless, I think this information with this digital age should be way more available. We have so many means to inform and share, why was it so difficult for me to find information and fellow concussioned ones?

Well, there is a lot unknown, and even more so, a lot of stuff that’s written is written in loooooong ass literature that that concussed brain cannot cope with at all. Also, as I said before, screens are the devil, as I’ve been saying for three months now, so doing rigorous research is out of the question.

That could be done differently. So why not do it myself? Even if I have only one person following my posts that would already be one extra concussioned one that doesn’t feel alone, but supported and ignited to go for recovery. And maybe, in the best of cases, if there’s more attention towards concussions, someone will throw some money at research finally because we should be fucking able by now to figure out what’s wrong with concussed people I mean come on, we can cure anything..

The struggle is not as much the pain and the symptoms, but the not knowing how severe, how long, what you can or can’t do, when it’ll get better, what you need to do to get better, and no one, not even neurologists, giving you any proper directed advice. “Everyone is different.”

While that’s true, I can share my story, and hope it helps others. I’ll make them short, 5 minutes reading or listening time, relaxed, in a slow voice, in a quiet environment, so it’s doable to listen or read for new concushioned people. Tips tricks and information is more than welcome.

Let’s crush this.

So, I'm just getting out of a pretty severe relapse. Later, the relapse – when it started lifting and my symptoms minimized – was accompanied by an insane tension migraine attack. Four to fie days of exterme headaches and to top it off, nausea and vomiting. It was so bad I went to the emergency GP (General Practicioner, huisarts) post of the hospital (it was Sunday evening) to check if tehre was nothing wrong neurologically. * If your symptoms worsen extremely, you lose sense or strength in limbs and or start vomiting, anyone should call a doctor. It could indicate a neurological problem (brainbleed, that sorta stuff).

As you can imagine, I've mentally been struggling. I just started my “recovery roadmap” two weeks before this relapse and it was going pretty well. I was two months into concussion territory and felt ready to start doing stuff to get back on my feet. Apparently, I was overenthusiastic with the steps I took. Although I honestly thought I was only doing what I could handle. Every single ''activity'' (anything other than lying in bed with a sleeping mask on) I do I go over and over in my mind whether I am ready for it, if I feel well enough, if it fits into the steps I'm taking to recovery (I have a step-by-step plan, for example if the goal is a 40 hour work week, my very first step is reading something, a novel). Even during and after an activity I take time to check in with my brain, to feel if I made the right choice and do not feel too much strain. Nonetheless, I got a sick sensory overload whilst waiting for my physical therapist in the waiting room (yes, I might have also broken my right index finger during the concussion, no shit).

There were four people having two conversations, music and as a little sensory overload pusher: a kid that was kicking a ball around. Well, that was the push my brain needed. My god, it was like I was being squished by a 1000 people at a music festival, I felt so “benauwd”, like I had to get out of there immediately. Once I got home (cycled, of course) I started crying, collapsed exhausted on my bed, head throbbing and fell to sleep. This sensory overload happened twice more the following two days. The last day, it was accompanied by a severe hyperventilation attack. Only because of the thought of some people who were coming by my parents' house (my recovery sanctuary). Never. ever. had a hyperventilation attack before.

Damn, this was bad.

Anyway, so as I was saying during this period the fear and anxiety drained me. I even called my therapist again. I did not know how I would get out of this cycle of fucking up and ever get better. Maybe I will never get better? And this would just be my life now? There is so much unknown about concussions, how can people not know what it actually is, but know that I will recover? I'll lose my job, live of off government subsidies and probably become an alcoholic (not new to that, I've been a student before). I just did not understand how I could do and try everything the doctors told me, but still not be on the right track. Still get pulled back by relapses and even wordse a migraine attack so bad I did not dare to fall asleep afraid I wouldn't wake up (my brain definitely likes a touch of drama, but the reality was I was afraid something was terribly wrong in my brain, concussion wise).

“Gun jezelf de tijd”, I tell myself often. Which roughly translates to, allow yourself to take time. Anxiety and fear does fade. Better days will come, even if you cannot see it. Just because you're in the dark doe snot mean there is no possibility of light anymore. And, although I couldn't believe or feel it in the moment, truth is, recovery is not linear. It goes up and down and around and around. Hopefully, if ou have good guidance, it will not go down for too long, or too deep (pro-tip: ergo therapists are the shit to help you).

Fear is an emotion often thriving off of irrational considerations and knows no logical reasoning (apart from when you're cliffdiving or something). I will try to remember that next time fear grabs me, and realize I deserve time. And space. Even for bad days, bad weeks, despressed thoughts, anxious struggles, the're all part of it. The dynamic recovery. There's a place for all feelings and all struggle of the recovery. You just have to go through it, and to do that, you need to give yourself time. Because it will not go away from the one day to the other.

Just because I cannot see how to get there yet does not mean I will not get there.

I. Fucking. Will.