Read to me!
Tell me if this sounds familiar:
You’re in your TBI recovery and things start to go well. Your headaches are a little less, you seem to have more energy to talk with others and go out, and maybe you even start to do more exercise — getting out for more walks or maybe even starting to jog!
You’re like “woo-hoo! I’m better!“
It seems almost all of a sudden the pressure in your head comes back with a vengeance. Fatigue sets in so hard you can barely take a shower. Leaving your home is so stimulating it even gives you some anxiety. You might even feel bedridden.
I have experienced all of these.
If you have PCS or an ongoing TBI recovery, it’s highly likely you’ve had a setback, or two, or 10!
I’ve lost count of my setbacks. And counting them truly isn’t that much help. Certain setbacks stick out in my memory more than others, like the setback I had after my first road trip 3 years into my recovery – Toronto gave me quite the hangover even though all I drink was copious amounts of water!
The thing is that we tend to remember and be affected by our low points much more than our high points. And that’s just not fun nor fair.
This TBI recovery is after all one of the hardest things you’ve ever had to deal with in your life! And so few people get what you’re going through.
Setbacks are to be expected. But that doesn’t make them any less difficult to deal with when all you want is to move forward and get any ounce of your life back.
So coming back from my vacation, TWO WEEKS LATER than I said I would, I thought I’d share three steps that help me make the comeback more memorable than the setback:
1) Do something that lifts you up instead of beating yourself down
My psychologist used to call ‘beating yourself up’ like shooting yourself with a second arrow.
The setback is already a shot to the brain. There’s no need to take out your heart too.
So replace the dwelling doom spiralling defeatist attitude with something that actually makes you feel good!
I’ve been calming myself down and lighting up my creative brain listening to fiction podcasts as well as my favourite inspiring arts & entertainment radio show: CBC’s Q with Tom Power 💜
Combine that with taking the time to prep the food I like that helps my brain heal, and how could I not feel better??
2) Understand that no symptoms does not mean healed
One thing I wish I knew earlier on in my recovery:
The brain is still healing and vulnerable even after your symptoms are gone. Pushing too hard too fast can exponentially increase recovery time.
I sadly learned this the extremely hard way. My concussion in 2015 that I still feel the effects of, I actually felt like I “recovered” from in a week! My symptoms were gone and so I dove head first back into a way too busy & hectic schedule. The result? Well… the year is now 2021…
I have this mantra I try to tell myself whenever my symptoms seem to be at bay:
“I’m doing well… so I should slow down.”
This is very different from my previous approach of “I’m doing well so let me try and cram in as much activity as possible!!!”
It’s good to feel good, and still slow down in that moment to savour it.
3) If something good happened once, it can happen again
I think I’ve spent a lot of my concussion recoveries ‘waiting for the other shoe to drop.’ Meaning that because my life changed on a dime so quickly for the worse when I got these injuries, I felt like I was always on the lookout for something horrible to happen again.
But if I take that same reasoning and apply it to the positive, I can also recognize that if I got further in my recovery, if I got to a point where I could work, jog, and go out without issue, then even if I have a setback I know I can get back to that point in my recovery again!
I’ve come to realize that setbacks aren’t really setbacks. It’s just a moment.
Progress in my recovery is not measured by how few setbacks I have, but how much more frequent those better days happen over the year.
When I look at my recovery like that, I realize how far along I’ve come, and it motivates me to keep going 🥰
At the end of the day, I try to remember this gem from my psychologist:
“What if your symptoms aren’t a sign of you getting worse but a way of telling you how to get better?”
If you’re in a setback right now, I feel you. Know that things absolutely will get better. Even if right now it doesn’t feel that way.
You are stronger than you think.
With hugs from one TBI survivor to another,