10 PLUS - Setback Bonus! (There's no going backwards...)

(Want to listen to this post instead?  Less screen time!  For audio click here)

I was looking through my old journals.  I came across an entry I wrote in October 2015, about 4 1/2 months after my most recent concussion that I am still recovering from today. At that time, I was sliding fast (cue music, Red Hot Chili Peppers: Otherside).  I was going through a horrible and prolonged setback when I wrote the entry and poem that I will share with you today.  In the last few days, I’ve been feeling a bit better and now have a more uplifting outlook than I did when I wrote the original “Setback” blog post.  I thought sharing the journal entry I found and my current outlook would make a nice “Setback Bonus” blog post!

The journal entry and poem I'm sharing here is kinda sad (though, I think the poem is beautiful in it's misery, LOL).  It might also be less organized than my other writing (after all, my brain was pretty boggled at the time…). But when I read it now I still relate to it. I remember exactly how I felt writing it. I was confused, scared, hopeless. I didn't feel right in my own head. I didn't feel I could even trust myself. It seemed I had lost control over everything and no matter what I did, I failed and I got worse.  I didn't believe I would ever feel better.

If I could go back and talk to myself in October 2015, I would let myself know that it does get better; that there will be many ups and downs and even when I'm feeling the worst I've ever felt, that does not mean I've gone backwards.

“You can't go backwards. It's impossible. Because even if you felt better or didn't have a concussion, you still would have grown, still would have gained experiences, would still be a different person today. There’s no going backwards” …  Yet another poignant quote from my psychologist that replays in my mind when needed. And it's true. Even if a new setback puts me at a level of functioning similar to one, two or three years ago, it does not mean I'm starting all over from there. Because in those one, two and three years I’ve learnt new strategies, developed new skills and put more supports in place to help me manage and cope with these bumps in the road. I find this perspective so much more helpful in getting me through the tough times, rather than giving into the ominous feeling of starting all over from scratch.  It may not always be easy to take this perspective, but for me it’s been worth the practice.

I'm sharing this journal entry especially for those out there with PCS who may be in a similar dark place of setback.  I hope it helps you realize that you're not alone, you're not losing your mind, you're not doomed for all eternity.  It's completely valid to be feeling the way you are feeling.

Journal Entry - October 2015:

I'm tired of being tired. I get anxious about my anxiety. I have too little energy to do anything about my low energy.

I think one of the worst parts about being sick when recovering from PCS, is that all you want to do is watch your classic sick day movies… but you can’t.

But really, all your symptoms are exacerbated and it feels like your PCS just got worse. So unlike a normal sick day when you feel like shit but enjoy parts of it knowing it will end, the PCS sick day can be wrapped in fear and anxiety of a setback - how long will it take me to get back to where I was, which was barely functional in the first place?

And then there's all sorts of doubt. Doubt that you can do it. Doubt that you'll get better. Doubt that you're even sick in the first place… am I misreading some minor events or symptoms? Extrapolating the interpretation to the worst and convincing myself I am sick? Am I subconsciously doing this to myself to avoid having to do more challenging and anxiety-provoking things?

And then you realize how limited and lonely you really are. You're amazed how content you were just days ago with only being able to go out once a day, to quiet environments, with a few people. And only familiar environments and people or events you have control over. Because anything now is too hard.

Wandering

My mind’s a fog

It’s hard to tell you

How it feels

To be this way

I write these songs

I feel unwell

It leaves me

Day after day

Wondering

When will this come to an end?

Is it just the beginning?

I would like to mend

My head, my heart

My feelings

From wandering away

My head reminds

I’m trapped

To it’s limits

Stuck in this time

I pull the blinds

I’m wrapped 

In isolation

Comforted by rhymes

Surmise

What if this is all I get?

Make do with what I got?

I fail to let

My head, my heart

My gut

Believe in better times

Why can’t I go out?

Why aren’t I allowed

To work?

To play?

To read?

Why can’t there be found

A cure for my brain’s cloud

To speed it’s recovery?

It feels like a fail

How will I prevail?

When will

My head, my heart

My feelings

Wander again with me.

I don't know how long it will take you or I to recover – no one does. I don't know how many ups and downs you or I will have – no one does.  I can't say for sure, but from talking with others and from my own experience this seems to be true: 

• There will be many ups and downs. 

• It will get better.

• Regardless, when we pop out the other side, we will be different people because there is no going backwards.

- Krystal