Iris S. Transcript

So my name is Iris, and, yeah, before my concussion, I was someone who was always, you know, busy doing something I loved, you know, my job that I was just starting. I was working in it as a software engineer, and I just finished my studies, and we were coming out of lockdown, and everyone was just, there’s just this feeling of just, oh, the world is opening up again. And I was really excited about the future, so yeah. And I was also really excited about new hobbies that is trying out. And one of the hobbies was karate. And this was in December, 2021 so it’s nearly two years ago, and it was about a week before Christmas. and we were practicing for a belt exam, and I was practicing with a karate buddy, and I accident, got a lot of throat, and that sort of like, that impact made my body go backwards and sort of like a whiplash motion. And initially we all laughed because we didn’t really, you know, you sometimes just, you get blows to the to the body, more often with karate, and it’s just everyone just just laughs about it, you know, to just relieve the tension. And it took, it took me a few seconds to realize that, wait, this isn’t, this isn’t right. Um, just my whole body just suddenly felt different. And the first thing that I realized is that my like, I just felt like someone was grabbing me by the throat, and like I had, like, a really hard time breathing, and I was feeling dizzy, and I had a hard time, you know, standing on my feet, and you could feel the tension in the room build as everyone was like, okay, this is not good.

So I immediately got just just just dizzy and just just confused and just this really weird feeling of just overwhelm and like losing control, even though you’re not really losing control.

Everyone stopped what they were doing. And then, you know, I said I sat down, and actually someone had to hold on my head, because I even wasn’t able to keep up my keep up my head and my neck so wobbly. It was like it was, it was gelatin, and it was just weird. And I kept going in and out, like I was barely able to remain, like conscious. But I was, you know, I was sort of, like, on the on the edge of it, and but everything was just really, really slow. And initially, you know, we were like, Okay, let’s just, let’s just calm down. Let’s just, you know, give, give it a little while. And they actually called the the GP’s office, and in a very Dutch fashion, they were like, just, you know, take a paracetamol, it will be okay. So I got a paracetamol, and I got, you know, I went to the changing room to get some water. So I had to get up a flight of stairs, and when I went down, when I went back into, like the into the hall, I couldn’t stand, and I just fell through my knee. I, you know, my knees buckled and I fell on the floor, and the teacher had to catch me, because I was just so, so wobbly and so dizzy. And it was really weird. And somewhere in my head, I just knew that it was just, it was, it was bad. And my – because I realized that it was, it was pretty serious. My karate buddy, you know, she, she took me home, she got me set up close, and she drove me over to my parents, because, as we were driving to my own place, I kept, kept having these waves where, when I was on a like, a good point, you know, I was talking, I seemed quite normal. I was able to laugh, and you’re having a good time. And then when I went to, like, more of a bad place, I zoned out — I kept talking gibberish. I blacked out, or not really like blacking out, but I was just being sort of half half unaware of your environment, and just very woozy. Um. And, and, yeah, when I got a parent’s place, you know, I can’t keep up my head. My eyes were moving backwards, and everyone was just staring at me. It was like, What’s going on here?

So we went to the GP again. I got upgraded to ibuprofen this time. And they’re like, you know, just rest up, you’ll be fine. Even though it took me like, 30 seconds to answer a question, because they were because I was able to answer a question, even though it was like, really delayed, they were like, Yeah, you’ll be fine. Two days later, I my talking, my speech issues were so bad that my muscles, my jaws, just cramped up, and it took so much thinking to even just pronounce a word. It was really, really scary to lose your ability to talk. And yeah, two days later, I was just like, yeah. I was saying over my parents at the time, and I was just like, yeah, we’ve got to go back to go back this nugget. So we went back this time to A&E, and we went to neurology, and they wanted to do like a CT scan, but again, those waves know where I was worse and when I got better. When they saw me, they were just they were discussing the findings of the CT, which was really clear, there was like nothing to be seen on CT scan. And the neurologist talked with me while I was in, like a better phase, and they didn’t really feel like there was anything wrong with me. So they sent me home again, which, looking back, you can’t see concussions on a CT scan, because that’s a structural injury, but the structural scan and a concussion in a functional injury. So yeah, after that, I was just like, Okay, so I’ve been to, I’ve contacted medics three times. It should be okay. Like, I thought that, you know, okay, maybe this should be fine. And then I went back, like we celebrated the holidays. Normally, I even drank champagne, which makes me cringe.

Looking back, I was very, very different, like I was a lot more just apathic. I had, like, — everything was too loud, everything was overstimulating. I had a very hard time with like, emotional regulation. So for example, there’s like a candle on the Christmas table, and if it flickered once, which really overstimulated my eyes. And instead of being like usual and be like, can we please turn off the candle. I almost screamed at people to, like, take the candle away. So everyone was just like, Okay, this is off. But everyone also like, I’ll assume that I’d be fine. So after after New Years, it was like two weeks had passed, and I thought I felt okay, like I just felt weird, but I thought, okay, that’s part of the process. So I actually took the public transport home. I tried to build up at my own place for another two weeks, and again, I had problems with everything. Just basic routine was difficult. I had to write everything down because it was very hard for me to remember anything. But I thought that that was part of the process. And I thought because I was able to do more things, that things would be fine.

And the the real thing, where it really escalated was when I thought, okay, you know, I’ve been building up with public transport. Let me visit my sister. And that took about like one and a half hours by the public transport, and I ended up completely somewhere else late in the evening, because apparently I was so confused or brain foggy, but I didn’t understand that at the time, but that action took so much effort for my brain to also find my, find my way back, and to try to not panic being somewhere completely foreign to me, yeah, that just kind of triggered my brain, and a family member had to actually, you know, pick me up, because I was just so — I sat the whole weekend. And from that moment on, I just spent the entire day in bed. I had a hard time talking with people.

That’s when other symptoms have started to come up, like lack of taste, lack of smell. I got very angry at people, which I normally I’m not an angry person normally at all. and just yeah, just feeling dizzy the whole day, like I had to be like, even just like the little lights and charges had to be taped off, because I was just so extremely sensitive to lights, and I felt like I was just on a raft all day. And it was really scary for everyone, because who knew that that would have been possible from like, a concussion. We tried to see what would work. And you know, I had like, rest. I rested for like a month, but whatever we tried to do. Whenever we tried to build back up again, I just kept falling backwards. I kept progressing, kept getting worse. And at that point I was like, Okay. After like two, two and a half months, I realized that, okay, this is not – I know that we’ve had a CT scan and know that we’ve gone back so many times, but this is not working. So I went back to my GP. I said, Look, I don’t care that I’ve had a CT scan. Something’s wrong. I need more help. And initially my GP wanted to send me to a psychologist, because she was like, yeah, it can’t it can be a concussion after two weeks. But I’m like, yeah, it’s, it’s got to be something, because at that point, I’d even lost the ability to sleep, like I was laying in bed all day, but I wasn’t sleeping. I was just sort of awake the whole time. And I at that point, I hadn’t slept for about three or four nights straight. I had, maybe had, like, one hour a day, and I was just getting worse by the day. And that was really, really scary. I could even barely walk, like I felt my heart beating in my neck with everything, like I just started to have the I started forgetting everything even more. There was just chaos in my head. It was, it was really, really scary. And the fact that no one really understood or could tell me what was going on was making everything worse. The fact that you know, the GP, that should be the first person that you know, the person that the designated person to go to, the fact that she wasn’t taking it seriously was just — it was feeling like I was falling through the cracks of the system, which normally you’re so used to being able to trust, and now it’s somehow failing you. You’re like, what’s happening? Like, is this actually happening? Or Am I overreacting? Or, like, What? What? What is actually happening.

I think the first real, the first real turning point for me was actually realizing that, okay, I don’t know what’s happening, but I need to take this seriously. And I also was having sessions with a coach that I talked to before. And at this point I had, like, no one, like, no one was able to help me or give me some kind of relief. And the first kind of relief that I had was just accepting the symptoms, just not trying not to explain everything, but just be like, Okay, this is what’s happening. I don’t know what’s wrong. We don’t know what’s happening. That doesn’t matter. That’s not a priority right now. It’s about managing. It’s about it’s about coping, which meant I was writing everything down. I was making routines for every day so that I had to, so that I could, so that I didn’t have to make decisions. I was, you know, writing down everything that I thought I had to figure out that it didn’t keep on milling in my head. I started, you know, it was really good to have someone to help me emotionally process, because that’s just impossible in the middle of being like, in the deep end of concussion, and just having something that, just to have some tools to help my head calm down, because all of that anxiety about trying to figure out what was happening, and just the panic was really, really eating away at my energy. And having that, there were also a lot of waiting lists, so it was really scary that I couldn’t get any immediate help. But after like, a wait, I think I had to wait another one or two weeks, and that was just like, each day was just difficult to get through. But then I finally, finally, finally, like, it took me, like, three calls to my GP to eventually convince her actually. I got, by coincidence, a different GP, and I managed to convince him to get me to a rehab specialist. And it was just, I’m so grateful that I was able to go to her, because she finally gave me the answer and said, Yeah, this is just — you have not been able to get the proper help. You need acute therapy, and this is something that’s called Post Concussion Syndrome. And just the relief that I felt, and just the fact that she told me it’s going to take a long time, but you can recover from this. And she set me down, and she got this a like A4 paper, and she wrote down, like, multiple, like, she said, you need, like, a multi disciplinary team on this. You need this kind of help. You need that kind of help. These are the options. And she actually sent me to a clinic for sports related concussions, and they did a screening on me, you know, with, like, balance, a balance test, neurocognitive screenings, where they tested my memory, my processing speed, and they had a facial therapist look at my neck. And I finally had some tests that actually, you know, that actually showed that, yeah, it I was severely affected on all sides, on all on all areas. Like my neck was just due to the whiplash, because usually also have a whiplash with a concussion, which is it was, it was so stiff, like I could barely turn my head. My jaw is affected. I could barely send them one leg, my processing speed was off. It was just a lot slower. I could barely remember number sequence, and it was just a relief to finally, finally have some answers. And the sports physician, you know, he sat with me, and he tested my eyes, and when my eyes went up and down. The vertical gaze thing. It was all wobbly. And I finally felt so, like it felt valid. And it was such the relief to finally have those answers and to be like, Yeah, I’m not crazy. This is an actual, real thing. There’s just an it was just, it was just indescribable.

And then I finally was able to also have occupational therapy with sensory integration, which is basically just, you know, how to manage your energy with the additional part of how to manage over stimulation. And she introduced, she was also, like, specialized in PCS. And, you know, she introduced me to like a weighted blanket, which, for the first time, made me feel like I was not on a raft. And it honestly made me cry, because for three months, I just had, I felt like I was in a boat. There’s just no sense I was there was just no steady land for me, it was just just the fact that she – yeah, that she understood. And she did tell me that recovery was probably going to take two years. It was really tough, but as also a relief, because finally, someone could tell me what’s up. So we started, like, active weekly therapy, you know, where she would help me finally manage my energy, you know, build routines. She helped me manage over stimulation, so things like drinking, like little bits of water, leaning with your finger against the wall to study yourself, walking meditation, using point systems to sort of categorize which activities are very helpful and which are not helpful, and eventually being able to build those things up.

And the first couple of months, my life was just consistent of routines, like I had to live based on routines, because if I didn’t have them, my day was just a black hole, because I was just I was having a very hard time making decisions, and that just even having to make a lot of decisions for me, was exhausting, and it was for me, routines were so necessary that we even had to build up, like every hour or half hour for me was just organized. We had a routine for that every evening, I made a routine for the next day, and I had, like my routines put up on the door. I started having lists for everything on the door, even like phone numbers, activities that I would be able to do during the night, because I also had to cope with the sleepless nights, because I literally had to relearn how to sleep again, because my my brain was just so out of the whole buyer written thing. So the routines also really helped my brain to get back into like rhythms. So I literally had to tell my brain, okay, right now, it’s lunch right now, it’s dinner. And I had to have a very strict sort of evening routine that helped my body sort of externally. It was like an external sort of way of telling my brain, hey, it’s we’re getting ready to sleep. What you normally have internally, we now had to sort of simulate externally. So. So that my brain would be able to practice those things again. And in that way we were kind of like, a lot of things I had to, like, relearn again. So yeah, also just eventually building up from a routine to being able to just go about my day without having to have everything written down. You know, eventually I had, like, for example, everything written down, from like, having lunch and then you draw and then you read, and then you walk and then you sleep. We had to eventually move from like, these really concrete routines to having like categories in routine. So now you have lunch, and then you do something creative, and then you rest. And then, you know, within those categories, I had, like, four choices. So then, you know, I would be able to get used again to decisions and to choices, because my brain was just that. It was just impossible for me to keep an overview in my head, and that was just causing anxiety, and that was just causing I was just eating away a lot of energy. And, yeah, just and just progress took, especially the first year, it took months. I had to think about everything, even how to go up the stairs, how to walk outside, how to do my groceries. I had to think about every single aspect of my life. But because I finally had that, had that help that was really, really helpful, it still wasn’t really easy to get the help for every area that I needed, because visual therapy took a little time to find as well. My first PT wasn’t specialized, but he was really eager to learn, but he did not understand neuro fatigue at all. So he every time I went to him, I just went back to my house crying, and it just caused flare ups every time. But I didn’t know what neuro fatigue was, but then I eventually made the step to go to my current PT. She knew about, like, jaw issues, and it was really intimidating, because she was also specialized in, like, oncology patients and all of these, like chronic conditions. And that was really scary, but I was glad that I made the the jump, because she also was able to help me with like my physical progress. And to this day, I still have to work with like her to like build up with like physical my physical progress is still quite — it’ss my biggest problem is my biggest hurdle, definitely.

So I feel like my work because I’m able to do it from a computer, which was definitely impossible at the beginning, because I even had to discuss with my ot how to read through mail, and we had to do the very, very slow of the first year after the first year, I was able to work like eight hours a week. And right now I’m actually very close to my two year mark, but I’m also very close to my full time hours again, which is amazing. And at this point, the biggest challenge still again is definitely like physical like, I need help with household. I have problems with standing. I’m still limited with like transport. I can go by bus and by tram and stuff, but I haven’t been able to go by by train. Like public areas to overstimulate me very much, but I have been able to go to a party recently, like a work party for like one and a half hours. So there is definitely progress. But I think the most, the most important thing that I’ve been able to learn so far with like making progress and building up, is to do that with the supervision of someone who knows what your condition is like, to give it time, because progress can be very slow, especially at the beginning. But if you’re if you allow for foundation to build, eventually, the progress will be faster eventually, like, for example, with my eye exercises, it took me months to be able to, you know, look from left to right, left to right. The first weeks, it was like, Okay, now from three, three to five, to eight. That that’s weeks in between every point. And eventually I was able to do like five cases left to right. So have that patience.

My mind’s shifting a bit.

I have that patience also be just make sure stay with your feeling. Because I’ve had so many points where people are like, yeah, just you just gotta push through. You just gotta try this. And then I gave. For a chance, and it just didn’t work. And it worked very well for me to just eventually be like, Okay, it’s not working, but keep on, keep on trying, keep on looking for things, because I had to, for example, give up on a lot of hobbies. I used to love playing flute. I used to love karate. I used to love all of these things that I’m not able to do anymore and that that was really, really hard, losing the identity.

But I kept on trying to find things that I could sort of that sort of felt like I could claim parts of myself back. I’m, for example, now doing singing lessons instead of actually playing flute. Because for me, I still can’t play flute to this day, and I don’t know how long that will take, but I’m definitely motivated to try that again. But so when flute didn’t work, I tried guitar like online lessons, and that just didn’t work because, yeah, it was just way too much, you know, like focusing on my fingers, focusing on the teacher, didn’t work. Then I stopped again. And after a couple of months, I was like, okay, screw the instrument part. I really need music though, let’s just try singing. And I’d actually, I’d always wanted to sing, but I was always too afraid to do it, and now, like, there was no other option. So I actually started singing lessons online, singing lessons like half an hour every two weeks, instead of, like, weekly or an hour. And I was very affront with my music teacher about this. I was like, look, I have a brain injury with, yes, a concussion is a brain injury, even though it’s called a mild brain injury, it’s not like the impact is a mild. Anyways, I was very upfront about it. I was like, Look, maybe some days I have to cancel, like, last minute, and he was really cool about it. And yeah, because, because I’ve been like, because I’ve been able to accept my current situation, I’m actually like, able to do singing lessons, and sometimes not every two weeks, maybe every three weeks. Some days I have to stop earlier because I’m just not able to concentrate. But I’m able to actually have singing lessons, and I’m able to train, like, my hearing. I’m able to, like, learn music theory in like, a little bit, which initially was really, really difficult. I even have been trying to give myself the space to just make random sounds in a keyboard. Because, yeah, I just, I’m not able yet to concentrate on, like sheet music or like musical systems, musical like theory, just too much on my brain. Like, I can’t do all of that together, but I can try and sit in the piano and just randomly push some keys and then try to make like little melodies and express my feelings based on like the like the really low tones or the really high tones. And even though it was really cringy at the beginning, it’s a really good way to express myself, and it’s music, it makes me feel closer to myself.

So I feel like, you know, try to look for things that you can do, you know, try to push those limits and try to even do things, even if they make you uncomfortable. Because, yeah, I was also very uncomfortable trying to sing and then being afraid that people outside wouldn’t be able to hear me. Because, at the beginning, you know, obviously, with an untrained ear or with an untrained voice, yeah, you’re bound to not sound like Adele. But if you know, if you have something to work towards, it’s, it’s fun, you know, and that’s the thing that you need. You need something to or to work towards. You need something you need something fun. So definitely also look for the ways that you can have fun, because there are those opportunities.

And, yeah, another thing that really helped me was community. Just I know that you feel alone. The first, the first time that I have met someone that also had PCS was like, six months in. I felt so alone, like I always heard that, oh my gosh. I never heard of this before. Like, my case manager was like, I’ve been working for seven years, and this is the first time I see this. And you just feel like an outsider. You feel like, oh my god, I’m never going to meet anyone. Like, how am I going? Like, how do I know how to do this? Because there’s no really set protocol for concussion recovery. There’s a lot of things that you have to discover on your own. And yeah, just the first step really is, like, if you can, first off, really, really listen to what you need. Because even if, like, I tried PCS communities. At the beginning, they were actually really overwhelming for me, because it’s you get confronted with the fact that, yeah, this is going to be it may take quite a while. It’s very individual, but it can take a while, and that’s that possibility is very overwhelming. So take your time with this. Personally, what I do for myself is I would not recommend reading books, because that’s very concentrated. That’s very like it’s just with things like Instagram or Facebook. You can choose which aspects, which which messages you read, but with a book, you’re like in the middle of it, so maybe read that for later. If you’re ready for that information. I honestly still don’t read books because it’s still too close. It still gets too close for me. But if you’re ready, like, take time to process this.

Because even though a lot of people say that concussion is just a concussion, in like, at least 30% it can be, like, really, really impactful. So take your time and be gentle towards yourself. And if eventually you feel like you’re ready go to like platforms like this. Look for other people. I would personally recommend Instagram. I don’t recommend Facebook, because those groups are more negative in my experience. But look for other people who are in the same situation, because even though you feel alone, you’re not as alone as you think, because a lot of people are indoors, it’s harder to meet them, and I think because it’s so like, now that I know about it, now that I share my story, people like, Oh my God, I’ve had a concussion as well, and now I keep having these neck pains, or I keep having these migraines, or I keep having these fatigue issues. But they’re like, you know, I’ve just got to deal with these things like you never see by these things, because people don’t have a good explanation for them. So they just, they just survive. But it is a real thing, and it is a lot more common. It’s actually shockingly common, because everyone like, it’s, it’s, it’s actually like, Oh, my friend is also having concussion and has now these lasting impacts. It’s, if you eventually get, like, more used to it, and you get more inside the concussion communities, and you know what to talk about with people, you’ll eventually discover that it’s definitely a lot more common than you think it is. There’s just not a good support system, there’s not a good protocol. There’s not like it’s not as obvious as more well researched, especially when it’s more chronic.

Chronic conditions are sometimes very difficult for people to understand or to treat. But you’re not crazy. I felt crazy as well, but you’re definitely not. Yeah, keep on looking for those communities, because if you eventually find those people, those people can also connect to other people. A good, a very, very good way, if you can’t immediately find those people, if you have the energy or the courage, if not, that’s absolutely, totally okay, but the way that I sort of automatically saw them coming to me is by starting your own Instagram page. Use hashtag like concussion, concussion recovery, brain injury, which is also a valid term to use. You can use the term brain injury, and people will start following you. They’ll start DMing You. They’ll start commenting. Because I know that it’s hard to to actively like, orient these, these networks. It’s hard. It’s hard with the concussion, but share your story, share
what you’re feeling, share snippets of your daily life. It’s also very, very good to give, like narrative, using the power of your own story to give it meaning. That’s
very, very important. Like I started brain.bound my own journey, my own Instagram page,about seven, eight months in, and it’s been so helpful, because you lose yourself, you know, you lose a big part of what you identified yourself with, and give yourself that time, and you will be able to find those little bits of identity, and you’ll be able to. Find bits of your old self, maybe, but you’ll also be able to find like new parts of yourself, take the time to accept it, but it is worth it to embrace the situation. It is that’s where you’re able to find the best opportunities for yourself.

And yeah, it’s interesting, because right now it’s like I’ve been talking for 30 minutes, and this is definitely one of the one of my main symptoms, like brain fog and like difficulty with speech and also with recovery. It may take longer for some people.

Don’t be alarmed if new symptoms come up, because for me, like I still have, like the taste thing, it’s harder for me to smell, but I also had really weird symptoms come up later on, like, for example, for me, like spasms were more common. You know, when I get tired, like my hand starts spasming, or I have them in my leg, especially when I’m in bed, for some reason. I mean, when I’m like, resting like my my my upper thigh starts to spasm, my hand starts to spasm.I can also get like, weird symptoms, like tinnitus. It’s a lot of really intense symptoms. Um, it is really scary, but it’s just the PCS brain is traumatic. So learn about PCS. Learn about uh, like concepts like dysautonomia, which just means that your autonomic nervous system is dysregulated. Learn about it, understand it, and that will really help.