The highs and lows of living with a brain injury for 6 months
Day 183: Sunday 2nd September 2018
I cried myself to sleep last night, had a nightmare about going to prison and have woken up today in all the tears. There’s no hiding this one. I’m finding this weekend tough going. I’m losing faith in my recovery. There. I’ve said it now.
Six months ago I’d spent my first night in hospital in horrendous pain after an attempt at surfing on snow went wrong, there was a whole load of stuff that didn’t make sense to me and I knew I’d had a knock to the head. Then 5 days later my symptoms took a turn for the worse and I was diagnosed with a brain injury, post-concussion syndrome.
- Read how I felt the day I was diagnosed with a brain injury
- Read 5 tips to help you deal with the emotional rollercoaster of life with a brain injury
I know that statistically most people will recover from PCS within 3-6 months but 6 months in and I’m not even close. I thought because I was physically strong I’d boss my recovery. 6 months out of my life? I don’t think so! But when you have a brain injury, you’re not in control. You don’t get to decide. And I like to be in control, at least in my life anyway, and I’m so not.
I’m struggling with all the unknowns. All I want to know is when my life can get back to normal. I need a crystal ball. I need someone to tell me that in a year from now I will be me again. Or 6 months. Or whenever.
I just want to know. But I can’t.
All the pain and limits of life with a brain injury
I’m just fed up living a life with limits. Soooo many limits. I feel trapped. Even in my dreams I’m trapped! I hate that I have to turn down invites to all the parties. I can’t go because my brain is super sensitive to noise and when it gets too much to handle it affects all my symptoms. I can’t think, I can’t get words out. I struggle to cope with my family having more than one conversation at once. A party is just not going to happen. I’ve turned down invites to the cinema, to gigs, and dinners too. This social animal is feeling like a total hermit! I see the invites come in and I’m like, let’s just park that there and see how I am nearer the time. Eurgh.
There’s been a whole lot of pain in my legs recently and I know that pain really affects my emotions. I can handle so much pain and then I’m like enough already. I’ve had 6 months of pain between headaches and leg pain. It’s like having toothache in my bones. The kind of pain that makes me want to rip my skin off my bones to get some relief. I’m not allowed stronger painkillers as my specialist doesn’t want them to interfere with my brain healing. So it’s over-the counter-pills, heat packs, baths, massages and a whole lot of potty mouth.
I’ve been living with this brain injury long enough to recognise the pattern. My brain freaks out when its senses are over stimulated by everyday noises, conversation, traffic. Any noise that I hear is way louder than normal. With that my symptoms get worse, I have more pain, which forces me to take it easy and then the cycle repeats itself over and over again.
People tell me I’m pushing myself too much. Sometimes pushing myself is doing the dishes or washing my hair. Other days I can manage those things ok but then can’t handle being outside. I just can’t predict it.
I can still have fun with a brain injury
I’m all for trying to see the positive and I know that emotions come and go. This weekend is a tough one because of the milestone and I know that. So with that in mind here’s a look back at my tweets of happy times I’ve had over the past 6 months.
Yes, because you can actually have some fun living with a brain injury. Who would have thought it?!
My beautiful niece Nyla was born
#findingmysparkle Day 37 🧠💖
So much love in the room as my family met my new niece yesterday. Love and health is what truly matters 💗
— Anne (AJ) Johnston 📸 (@Annejphotos) April 9, 2018
I went to the naming ceremony of my friends Chris and Cara’s adorable baby Luna-Rose
#findingmysparkle Day 43 🧠💖
— Anne (AJ) Johnston 📸 (@Annejphotos) April 15, 2018
I appeared on TV to raise awareness of post-concussion syndrome
Catch it on Freeview channel 8, Sky 117, Virgin 159 and on the STV Player.
— Anne (AJ) Johnston 📸 (@Annejphotos) April 19, 2018
I enjoyed summer in the park chilling with my colouring books
#FindingMySparkle Day 114 🧠💖
It’s a beautiful blue sky day here in Forfar ☀️😎
— Anne (AJ) Johnston 📸 (@Annejphotos) June 25, 2018
I had cuddles from Crannog
#findingmysparkle Day 53 🧠💖
Since my last update I’ve been realising the power of dogs and some special humans helping me with my brain injury.
— Anne (AJ) Johnston 📸 (@Annejphotos) April 25, 2018
I met Jenson and his amazing Mum and my new friend Eileen
— Anne (AJ) Johnston 📸 (@Annejphotos) May 10, 2018
I started going to floatation tank therapy and it felt amazing!
Look at my big smilie face after float therapy 💖
Floating helps relieve my pain and gives me deep sleep which is crucial to my #braininjury recovery.
Please support me so I can book more sessions: https://t.co/5C4N6VTmrI
— Anne (AJ) Johnston 📸 (@Annejphotos) June 20, 2018
I took photos of the cherry blossoms
What a beautiful morning to sit in the park! ☀️🌸💗
— Anne (AJ) Johnston 📸 (@Annejphotos) May 12, 2018
I went to Crail with my friends Maggie and Jim
What a gorgeous morning in Crail and St Monans soaking up a little sunshine and enjoying the outdoors ☀️😎📸
Now to catch up with what I’ve missed at #cmalive18
— Anne (AJ) Johnston 📸 (@Annejphotos) June 6, 2018
I got a sparkling purple walking stick cos I couldn’t have it any other way
#FindingMySparkle Day 95 🧠💖
Taking my new beautiful purple walking stick for a test-drive to help my balance and stop me falling again… cos would it be any other colour?! 😂
— Anne (AJ) Johnston 📸 (@Annejphotos) June 6, 2018
My friend Pam treated me to a hair cut and treatment
I love my bouncy new locks!
— Anne (AJ) Johnston 📸 (@Annejphotos) June 21, 2018
I won a meal at the WeeCOOK Kitchen
Thanks so much Hayley and team @WeeCOOK_kitchen for our competition win last night.
Amazing food and great friendly service. We’ll definitely be back 💖 pic.twitter.com/dNNBbpGmct
— Anne (AJ) Johnston 📸 (@Annejphotos) July 14, 2018
I joined Headway Tayside and had fun doing crafty stuff with other brain injury warriors
So glad my pain calmed down to a manageable level today so I could visit @HeadwayTayside
I can’t explain how good it feels to spend time with other #braininjury warriors that just get it 💗
— Anne (AJ) Johnston 📸 (@Annejphotos) August 29, 2018
I got big slobbers from Phoebe dog
#FindingMySparkle Day 182 🧠💖
Look at that face! Dogs really are the BEST #braininjury therapy. I went to see Phoebe last night and she covered me in slobbery kisses 🐶💋💋💋🤣@salvaughan #dogfriendlyangus #dogs #angustourism #angusambassadog #postconcussionsyndrome #staffie pic.twitter.com/bQGm4R0oJx
— Anne (AJ) Johnston 📸 (@Annejphotos) September 1, 2018
My first referral from the Brain Injury Clinic
I’m so pleased my first referral from the Brain Injury Clinic is through and this week I had an acquired brain injury worker visit me. She is working with me to support me in the goals for my recovery. I struggle with memory and routines so she’s helping me with strategies to make my life easier. I hope that soon too I’ll have a neuro physiotherapist to help my brain learn how I’m supposed to walk because that’s nowhere normal and I’m waiting for occupational therapy too.
I’m not where I want to be but I’m on the right track
Right now I still have a lot of hurdles to jump over but seeing those photos is just the reminder I needed that I’m on the right track. Yes, I’m shit-scared of what my future will hold but I’ve also learnt so much about myself along the way. I’ve learnt what and who truly matter in my life. True friends and new friends have shown up for my biggest challenge and I’m so grateful. All the crap I used to worry about. It doesn’t matter. I ain’t got the energy to deal with any drama.
I’ve discovered meditation and colouring books and didn’t know I could enjoy them! No matter how tough I find this I never give up. I can cry when things get on top of me and I use humour to get me through a lot. Yes, even if that’s laughing at myself.
And maybe focusing on the future and worrying about what might be isn’t serving me well. All that matters is that every day I get up, I believe in my recovery journey and I do something every single day that makes me happy.
Today that’s looking like a big binge in front of the tv. Ooh, I’ve just remembered the new series of X Factor has started and I recorded it! And if I end up in tears again I’m not going to beat myself up about it. But if the tears start flowing I have hot chocolate and cake at the ready.
And there’s a whole heap of other post-concussion syndrome warriors on Facebook that I know understand and will help me through. If you’re in the UK, please come and join us.
To everyone that has supported me along the way, I know there’s been a lot of tears and way more f-bombs than usual but please know I couldn’t do this without you. Whether it’s another 6 months, or a year or longer, I will stay focused on my recovery and do whatever it takes.
Over to you, warriors!
How have you dealt with the milestones in your recovery? What have you learnt about yourself living with a brain injury? Pop into the comments and let me know.
I know how incredibly scary life can be when you’re living with PCS but I don’t want you to feel alone. I’ve got your back and if you need to chat any time, please get in touch. You’ll also find me sharing my journey daily on Instagram so feel free to connect and say Hi!
And remember, you’re not broken, you’re finding your sparkle so do something every day that makes you happy!
PS Don’t forget to click the link below to get the next instalment of my blog!