Updated: Mar 7
This was one of my biggest struggles, having a setback in my post-concussion syndrome journey and not knowing why. Sometimes I know that I just did too much and of course, I didn’t like those setbacks but at least I knew why I got them. The hardest thing for me was having a setback and not knowing why I had them. I think all people with a traumatic brain injury can relate to this.
When I know where my setback is coming from
I think we can all relate that having a setback when you know why you’re having one is easier than not knowing where it comes from. When you know where the setback is coming from, it feels like you have more control over it and you can change it the next time. For example, I often got setbacks because I had too many social activities or too much screen time.
Always when I feel good I almost overdo myself because it always feels like I will never get a setback anymore. You maybe should say if you get them that often you will know they are always around the corner. But trust me, you don’t, when I feel good it feels like I would never go back there.
It’s really hard to always need to find a balance between not doing too much and resting. It also feels like my limits are different every day which makes it even harder to know when things are too much and when I need rest. Most of the time it’s already too late and in the evening I feel that the next day will be a “setback day”.
In the beginning of my post-concussion syndrome journey, I had setbacks sometimes for weeks. Now 4,5 years later most setbacks last for a day or a few days. I already got so many setbacks but every setback feels like a completely new one because they are always there really unexpected.
Post Concussion Syndrome - Things that can cause me a setback
Too much screentime
Too many social appointments
Nutrition: Not eating healthy / drinking caffeine
Too much noise/sounds
Stress (even a small thing can cost me stress)
Not sleeping well
Not being in my daily routine (travel, sleeping somewhere else..)
I am sure I have forgotten many things in the list above but these are the main triggers for me. I try to avoid those triggers as much as possible but sometimes you just can’t and sometimes some of these things are worth a setback. I can really enjoy some social gatherings even if I know that I will feel worse the next day.
Some things are worth a setback
Sounds maybe crazy but some things are worth a setback. You can compare it with a hangover, the drinking part is fun, but the next day isn’t that fun anymore when you wake up with a headache. Are you not doing this ever again? Maybe on the hangover day itself, you think you will never ever drink again but when you are recovered from it there will come a next time.
This is the same with having a post concussion syndrome or traumatic brain injury, you can enjoy things but you always have to consider, ‘is it worth it to feel less great?’ This made me pickier about who I spend my time with and what things cost me energy and what things give me energy. I see it as a positive thing right now because all I do, I do it with my full attention and I don’t do things that I don’t like anymore.
Before my accident, I rushed through life and wasn’t aware of my time at all. It took me a few years but I see the positive sides from it right now.
When I don’t know where my setback is coming from
It sometimes happens that I take that much rest as possible and still get a setback. It’s so frustrating because it feels like I don’t have any control over it and no control over my body. In the beginning, this made me really anxious too, especially in public when I couldn’t control my symptoms. I just couldn’t rely on my body anymore which made it hard to plan something because I never knew how I would feel.
Most of the time when I have an appointment I try to take as much rest as possible the day before. But still, this doesn’t guarantee anything. And also when I know I have something important I really feel that I need to feel well that day. Of course this pressure does not help.
Every day you’re waking up and you don’t know how you will feel. It can be a good day but it can be a bad one too. It’s like a game of the unpredictable. In the beginning, this was way worse than it is right now and my setbacks are less worse than I experienced during my first 2 years. So I still believe things will improve over time, it maybe a slow process but process is process.
I tried to not fight against my setbacks anymore
As all people with a traumatic brain injury know, it’s really frustrating to get a setback and I was always fighting against it. Always feeling so frustrated and trying to find out why this happened. Right now when I have a setback I try to give myself permission to rest and just accept that they are part of it. It’s not easy at all but it helps me to save my energy, my mood and to not feel frustrated.
This is something that I couldn’t do right away. Was I able to just accept it easily? No, of course not, setbacks are frustrating and every time it happens it feels like all my progress is gone. But it gets easier over time and sometimes it feels like I need a setback to move forward again.
How do I deal with it right now? I write down my wins even the smallest ones and I have my gratitude journal what is really helping on those hard days. Have you tried this yet in your traumatic brain injury journey? Please do! :)
During my concussion journey, I felt so lost and lonely.
I was feeling restless all the time. Doctors weren’t able to help me so I was feeling stuck. 🤦🏽♀️
My setbacks were the worst things ever and I didn’t know how to deal with them or prevent them. My days felt more like surviving than enjoying and I was always looking for a balance between rest and doing things.
Thankfully, I'm feeling much better now with the help of professionals who GET it and because of all tips and support from others in the same situation.
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