How to deal with the emotions of Post-Concussion Syndrome
Day 155: Sunday 5th August 2018
It’s just gone 6am, I shed a lot of tears last night and I’m stealing a line from Jessie J as a reminder to myself and all my brain injury warriors that “it’s ok to not be ok” about living with post-concussion syndrome.
My blog is all about raising awareness of PCS and I try to tell it like it is and help all you other brave warriors feel less alone while you’re fighting your own battles.
I’ve had messages on Facebook and Instagram from you telling me how positive I am. I always encourage you to celebrate your wins and be grateful every day. But do you know what? I’m not always the shining beacon of positivity that you think I am every day. I see your struggles, your hurt, your pain and I feel it too.
It’s ok to not be ok when you’re living with a brain injury
Here on my blog I try to be positive as that’s the kind of person I am most of the time. But this weekend all the good vibes came crashing down to earth with a bump and I’m sharing this with you because it happens to us all and I want you to know that it’s ok to not be ok.
I’ve got to know a lot of post-concussion syndrome warriors all over the world and we all have a few things in common. Not one of us signed up for this, we all had some kind of fall or accident that changed our lives in an instant and we’re all navigating our own shitstorms in the hope that we’ll make a full recovery.
Everything we thought we knew about our lives has changed. No one can tell us when things will be better. Our recoveries involve a lot of forwards and backwards steps and placing big limits on life as we knew it.
Our brains are working hard to repair themselves and for the most of us to the outside world we have an invisible illness. Unless PCS has given you mobility issues like me (purple sparkly walking stick for the win!) it’s difficult for other people to understand our daily battles as we often look normal.
A lot of people don’t know that post-concussion syndrome is a traumatic brain injury and that it can take a long time to heal. It’s classed as a mild traumatic brain injury, but as we know the affects on a person’s life are anything but mild. People see you in the street and think because you’re outside the 4 walls of your home or you’re wearing makeup that you look great so must be ok now.
No one really prepares you for the emotional rollercoaster and we’re only human. We can’t be positive all the time.
5 months living with Post-Concussion Syndrome
This weekend I had my first night on my own in our new flat on and it marked 5 months since my accident. I can usually see warning flags coming when my mood is about to go down.
I woke up to the news that The Courier had published another article on my recovery journey. I’m so grateful to their continued support in raising awareness of this brain injury. So I bought a paper and shared a link to the article on social media.
JP was away on a reunion night out, meeting up with the people that he did a sponsored walk with earlier in the year. He’d said at the time I’d get to meet them on the night out. I still can’t handle groups of people and noisy places so a pub was not happening.
I started tucking into a big chicken fajita pizza, looked at my phone and up popped some memories. I hadn’t paid much attention to this feature before but it suggested some highlights from 2017 so I looked at them. And then I watched some of my videos from before the accident.
Watching the videos of me was like watching another person. All that energy, enthusiasm, positivity in my voice. And then all the negative thoughts started.
I feel like I’ve spent 5 months living someone else’s life. I don’t have any fun anymore. This has been my life for the last 5 months. 5 whole months!
It consumes absolutely everything I do and there’s no escaping it. I don’t want this to be my new normal. I just want to be me. I’m fed up of the pain, of not being in control of my legs, I’m fed up of people pitying me and feeling sorry for me and the way that people stare at me in the street. I feel like my fight is just getting harder. It’s like I’m living someone else’s life.
I really wanted to see Mamma Mia 2 and had to turn down a big girlie night out to the pictures because I can’t handle the noise and being around lots of people. I won VIP tickets to a gig at The Hydro but can’t go to see my favourite artists for the same reason.
I get a visit from a friend once a week if I’m lucky. This social butterfly has almost turned into a hermit. I’ve lost so much independence. I can’t drive so have to rely on friends coming to me. I see my family once a week and even then can only manage being around a small number of them. Too many and I need to have a lie down away from everyone to rest my brain.
My business is on hold. The one thing that I was so passionate about. I used to love teaching photography and getting up at silly o’clock to shoot a sunrise. Now weeks and weeks go by and I don’t remember to pick up my cameras. I’ve taken one out a few times but haven’t edited any photos. This worries me.
This is life as I know it now and I’m shit scared I’m going to be stuck like this. Trapped with a shitty fucking brain that is holding me back from my life, puitting limits on everything I do.
Enough of the pity party
Ok, big deep breaths AJ, you can do this.
I’ve learned a lot about PCS and myself along the way and one thing I know for sure is all these feelings are completely normal. I know for me they don’t last forever so I don’t try to fight it.
I sometimes get a day or two where I’m in tears a lot, generally feeling sorry for myself and wondering when it will all end and I’ll get my life back.
Tips for dealing with the emotional rollercoaster of Post-Concussion Syndrome
The scariest thing about living with PCS is the unknown. But we have to have hope and belief in our recovery. I have my emotional ups and downs and here are a few things that work for me.
1. Know that feelings don’t last forever
I know that when I’m having a low moment which might be a few minutes, hours or days that it won’t last forever. I remember week 6 being pretty hellish. That sticks in my mind as I spent the majority of that week in tears. Little did I know how much I’d have to conquer since then and the extra symptoms that were to come.
As time has gone on I have got stronger emotionally and the lows don’t last as long. I think it’s important not to try to fake your way through it by pretending that you’re feeling ok. Let those emotions out.
2. Write a journal about Post-Concussion Syndrome
I’ve been keeping a journal since I came home from hospital. I started off doing it as my memory was shocking and I needed a way to note my progress. I write every single day and it’s my safe space to get out all those feelings. You can use Google Docs, Evernote or an actual pen and physical journal. Try to note down what you’re grateful for and your wins every single day. The tiniest of wins coun
3. Talk about your brain injury
It’s important to have at least one friend or family member that you can confide in. I used to bottle things up when I was younger but now I have a few really good friends that listen and don’t judge.
You don’t always need them to give you a magic solution. You just need someone to listen. You need someone to tell you over and over again that you will make a full recovery. Because there will be days where you’re full of despair and you need someone to lift you up and believe in you when you’ve lost the belief in yourself.
4. Connect with other Post-Concussion Syndrome warriors
One thing I’m so grateful for is the amazing tribe of brain injury warriors I’ve found on social media. There are thousands of people, all over the world just like us that’s totally get it. Here’s how you can get involved.
Join the UK Post Concussion Syndrome Facebook Group (UK only)
Join the Post Concussion Syndrome Support Group on Facebook (worldwide)
5. Call in the professionals
Above all else, do make sure that you seek professional help, whether it’s going to see your doctor or a counsellor. Dealing with a brain injury is a big deal to get your head around (pardon the pun) and it’s important that you’re honest with professionals about how you’re feeling. I’m not an expert and I’m sharing my personal thoughts on this blog.
I was at a Brain Injury Clinic recently and it’s comforting to me to know that I’ll soon be getting the expert help I need to get back on my feet.
Read about the next chapter in my recovery journey
For now though I’m going to drag my feeling sorry for myself ass through to the sofa, not feel guilty about eating Nutella on crumpets for breakfast and look forward to some family time this afternoon.
Over to you, warriors!
What’s helped you deal with the emotions of living with your brain injury? Pop into the comments and let me know. I’d love to hear from you!
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✨ Keep sparkling one day at a time! ✨
Much love and healing vibes,
AJ x
