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Brain injury setbacks

Updated: Mar 6, 2023

What triggers a setback?

If you live life after brain injury, you’ll have come to know that there is a range of things that can trigger a setback or a flare of symptoms. Overstimulation can do the trick, stress can be an important contributing factor, poor fatigue management, not supporting your body with good healthy habits (specifically thinking of exercise, eating habits and mindfulness practices) and a poor night sleep can also make or break your brain to name only but a few.

I'm doing the all right things but I'm still experiencing setbacks...

I know I’ve had more on my plate lately and to mitigate potential setbacks while the brain is adjusting to the new demand, I’ve paid extra attention to the usual triggers. I’ve also re-assessed the way I’ve been doing certain things, I’ve tweaked my priorities, I’ve put boundaries in place and I’ve even said no to various things which is massive for me as I’ve never been really good at doing that.

So all my stones are in place to succeed right…or are they?

To be honest, I know the answer to this question, but I think that most of us love the illusion of thinking that we are fully in control. The reality is that none of us truly are.

Are setbacks always within our control?

Truth is I’ve been doing really well overall for the last year and a bit. There’s been the usual up and down variations, but even through my Covid infectious period, my symptoms remained under control. I’ve been healthy and enjoying seeing my brain functioning to a much higher level.

The last few days have shown me that sometimes you can do everything right, but if you end up picking up a bug that your body isn’t familiar with, the stones that you’ve carefully and mindfully laid can become scattered, disrupting the precious order that you’ve worked so hard to put in place.

The onset of my latest brain injury setback

Roughly 2 weeks ago my son had a runny nose, nothing major though. A few days later, I started feeling unwell so I naturally thought that I was simply coming down with the same bug. I wasn’t super unwell, but I did notice that my post encephalitis brain wasn’t liking whatever bug that my body was fighting. Since then, things have been up and down and symptoms have been flaring on and off. As you do, you carry on while being mindful of being kind to yourself…which I felt I did.  Then 2 weeks later to the day, the brain proceeded to having a scary and impromptu shut down…and I’m talking like massive shut down. The type of shut down that sends you to the hospital as you find yourself being barely operational.

Perhaps when someone’s brain has sustained a few insults you become more prone to having the unexpected affect you in weird and not so wonderful ways.

After ruling out all the nasty stuff, the physicians were left with the causes that no one can really explain. I love myself a good mystery storyline, but when it relates to my personal health…not so much.  How can I try to mitigate or fix something if I don’t know its trigger right? That bugs me…a lot.

Becoming comfortable with the unknown

A part of me desperately wants to know why I ended up in such a non-operational state. Four days on from that latest brain episode, I can see how I might take a while to recover from this setback too. It annoys me. It’s not convenient either as I’ve got things to do, I had plans and projects and this latest episode has put a massive spanner in my wheel.

If only I could just swap that wheel right, but brains don’t work that way.

As I’m writing this blog, I’m also fully aware that I might never find out what triggered this unfortunate brain episode. I’m doing all that I can to be the healthiest I can be, but although that can go a long way to mitigate some risks, it doesn’t make me bulletproof. None of us are actually. So I’m trying to be comfortable not knowing. I’m trying to move on not questioning things too much as doing so hasn’t always served me well in the past. Perhaps exploring too many rabbit holes has had for effect to keep me still instead of helping me find a way forward.

Learnings from my recent brain injury setback

This latest brain episode of mine, and what I REALLY want to call this episode by the way is “brain shart”, does reinforce a few things:

  • It’s simply disheartening to experience such a setback. I have to feel the feels and let them go.

  • I need to keep making the most of all those good moments I experience. I shouldn't feel guilty about them because the reality is that in an instant, everything can change.

  • I can have all the stuff I so desire in the world to make me feel happy, but if health isn’t one of them, I reckon I'm just fooling myself.

  • Even with the best strategies in place, sometimes shit happens. Unless I was to live in a full on bubble, which would come with a multitude of other problems by the way, I can’t control everything.

  • Control is an illusion, I need to make the uncomfortable truth my ally instead.

  • I'm always stronger than I think. It’s often in hard times, that my body and mind will be at their strongest.

  • When the going gets though, I have an incredible support system around me.

  • As a dear encephalitis friend reminded me, "your body and mind have remarkable healing powers, trust that they can heal and they will do wonders for you."

So I’m approaching the next little while as a step by step way back to the top of the mountain while accepting that I’ll have to walk on flats, up a slope and a hill first.

It is what it is…I’m taking it on the chin, gathering my mighty strength once more, making rest my friend again and I will be asking and accepting help so I can bounce back on my feet and talk up a storm again.

What's your top tips to recover from a setback linked to brain injury?

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Veronique, I’m so very sorry 😞

I have also had several setbacks like yours that have landed me in the hospital. Those setbacks sent me into a tailspin. The first one I experienced post Encephalitis was hives, head to toe and out of my mind. Trip to the emergency room with iv drip of steroids and Benadryl. Nothing… I left the ER the same way I went in and was told to see a dermatologist.

My dermatologist conferred with my Neurologist.

The only thing they could come up with was that I had been exposed to something simple like even a cold virus and my immune system did not know how to handle it. I had a complete shut down…

Veronique Theberge
Veronique Theberge
Mar 08, 2023
Replying to

Thanks for sharing your wisdom and although i am sad it happened to you too, it’s comforting to know it happens to others too.


You're still recovering but you managed to process the event and draw actionable conclusions, that's what is pretty striking here.

We're never prepared enough for new setbacks or bad events despite all the life training, painful experiences and hard-earned lessons, but you managed to put things into words remarkably well and fast, congratulations for being so articulate despite the situation.

Veronique Theberge
Veronique Theberge
Mar 07, 2023
Replying to

Merci Fabien!

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