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My Story

Hey, I’m AJ (or Anne Johnston if we need to be all official), a photographer from Forfar, Scotland and I had an accident in the snow which left me with a brain injury, Post-concussion syndrome.

Read on to find out what happened, how it affects me every day, what treatments are helping me and how I’m on a mission to raise awareness to help other warriors all over the world.

From a fun day in the snow to a brain injury

It was a beautiful winter afternoon on Saturday 3rd March 2018, I’d been teaching photography in the morning and I was enjoying a family day out sledging in the snow. My nephew went ahead of me standing up on his sled and I thought it would be a good idea to try it too!

Unfortunately my sled twisted and I fell backwards, landing on my head. I got up and walked up the hill, said I was fine and then about 10 minutes later got so disorientated I didn’t know who I was, where I was, what day it was or what I was doing there. My sister filled me in on the blanks and said I went from acting normally to like I was living with Alzheimer’s disease.

I wasn’t knocked unconscious but don’t remember the accident or have much memory at all between that and the hospital. I was kept in hospital for 2 nights and told I had a bad concussion, whiplash and a torn eardrum. I was told (I think on the Sunday) that with my concussion I might wake up the next day feeling better but to make sure I rested for 48 hours. Ok, I’ll take a few days out of my business and then I’ll be good to go. Or so I thought.

Then at home, 5 days after the accident I woke up and new something was wrong. Like, seriously wrong. I was completely incoherent, my movements were extremely slow and nothing my Fiancé said to me made any sense. He took me to the emergency surgery at my doctor’s and I was told then that I had Post-concussion syndrome.

Say what now?

My mission to help other PCS warriors

I’ve learnt to live life in the slow lane and manage my limitations every day. Life for the moment is very different to what I’ve known for the past 37 years but I am hopeful that I will beat this.

And as I share my recovery journey I want to be there to support my fellow PCS warriors. If you’re recovering too I don’t want you to feel like you’re alone in this. Believe me, it’s a whole load of scary bananas, especially when you’re first diagnosed and you feel like you don’t know who you are as a person anymore but it does get better.

You’ll find all my social media links at the bottom of this website so don’t be afraid to get in touch. I will always reply, even if it takes a few days because I forget 😉

I’ve been featured in various newspapers in Scotland as well as on the radio and on TV and I will continue to do whatever I can to raise awareness of Post-concussion syndrome. I used to think that concussion just gave you a sore head and made you dizzy. Little did I know just how much PCS takes over your life.

I believe PCS is so misunderstood. On the outside warriors can at times look ok but underneath the exterior the brain is going through a huge battle of recovery and it needs to be talked about more. If you’d like to feature my story in the media or on your website please get in touch and let’s raise awareness worldwide.

What is Post-concussion syndrome?

Post-concussion syndrome (PCS) is a mild traumatic brain injury with a variety of symptoms that affect the person living with it. According to Headway, the brain injury association in the UK these can include:

  • Headaches
  • Dizziness
  • Nausea
  • Sensitivity to noise
  • Sensitivity to light
  • Sleep disturbance
  • Memory problems
  • Irritability
  • Restlessness
  • Impulsivity and self-control problems
  • Difficulties with concentration
  • Feeling depressed, tearful, anxious
  • Fatigue
  • Difficulty thinking and problem-solving
  • For some people PCS symptoms will resolve in around 2 weeks, for most people it’s 3-6 months and for a minority it can be years, with some people living with it for the rest of their lives.

    Post-concussion syndrome and me

    I’d describe living with Post-concussion syndrome as being robbed of part of my personality, feeling like I’ve been hit by the dumbstick as well as constant fatigue, headaches and a body that won’t move at a normal speed a lot of the time. One PCS warrior I know sums it up better than me she says it’s like her brain has been hijacked. Sometimes it feels like someone else’s brain is living in my head. Other days it feels like I have someone else’s body.

    All those symptoms you see above? The only one I haven’t had to deal with is nausea. So yay for that! Over time my symptoms are improving but it’s been a slow process and one that I struggled to deal with for a long time. Initially when I got my diagnosis I don’t think I appreciated what I was dealing with, or naively assumed because I was a physically and mentally strong person that I’d beat this. I was going to bounce back quickly. This wouldn’t hold me back. But I was wrong.

    I’ve gone through the woe is me, why me, my life sucks, anger, all the emotions and finally got to a place of acceptance. I know that it will take time and enough will in the world won’t make my brain heal but I can choose how I react to it. And I choose to be a warrior!

    Every day when I wake up I don’t know what kind of day I’m going to have. I’ve learnt that if I do too much (and a lot of the time I don’t know what that is until it’s too late) I’m going to pay for it for days. Other times I wake up and have a bad day of symptoms and don’t know what’s caused it. It just happens.

    There hasn’t been a day since my accident that I haven’t had headaches. It hurts where I hit my head off the ground and on the front of my head, above my eye, I assume where the brain bounced back and forth. To begin with I had headaches constantly but that has eased over time and now I’m lucky if it doesn’t start until the afternoon. When I try to do tasks that need me to think it literally makes my head hurt.

    The dizziness doesn’t affect me in the traditional sense but seriously affects my balance. On the straight I can walk ok for a short distance but add an incline up or down and my legs often struggle to put one foot in front of the other. So if you’re with me, get used to walking at a snail’s pace.

    My senses are on overdrive so I’m very sensitive to noise and light bothers me too. I can stand being around a small group of people for a couple of hours but after that my brain tells me it’s game over and I need to escape. The whole world is just too loud. And some smells are just hideous now.

    For 5 weeks after the accident I couldn’t sleep for more than 5 hours and it was very interrupted. Thanks to floatation tank therapy that has now settled and I can sleep for 6 hours solid at a time and top it up with a snoozefest through the day.

    My memory is quite hit and miss. Thankfully my technical knowledge of all things geeky like photography is there but it takes a while for me to recall it. I’ve forgotten so many birthdays, conversations I’ve had both before and after the accident, what day it is, what month it is, that I need to eat. I can have a thought to do something but unless I do it right there and then or set a reminder on my phone, the chances are I’ll forget for days or weeks. You know that thing when you walk into a room and don’t know why you’re there? That’s my life 10 times a day.

    On the irritability front I feel like I’m way less tolerant. I can’t help but get frustrated when I can’t manage to do something but I do try to be kind to myself.

    A lot of the time it’s like I have no filter so I’ll say literally the first thought that pops into my head and there’s a hell of a lot more swearing these days. Sorry, Mum and Dad! I was brought up never to swear in front of my parents but I think they’re used to it now.

    I find it difficult to concentrate on tasks for any length of time. I can’t focus for long and if it’s something I really need to use my brain for I have limited time before my brain tells me no more and my head pounds. I used to be able to do advanced level Sudoku but these days the easy stuff is barely a possibility. PCS makes me feel dumb but I know the intelligence is there. I just have to work super hard to use it.

     

    Treatments for Post-concussion syndrome

    Please note that nothing in this website is medical advice and you should always contact a professional before trying a therapy.

    There’s a whole bunch of things I do on a daily and regular basis to help my symptoms and I’m a huge fan of floatation tank therapy to help my symptoms.

    Please watch the videos below and remember to subscribe to my YouTube channel to get my latest updates.

    Can you help support my therapy?

    A massive thanks to everyone supporting me with floatation tank therapy to help my recovery. Please keep spreading the word and donating if you can so I can keep going ? I wouldn’t be able to do this without your help.

    Every time I go I reach a deeper state of relaxation and it gives me longer deeper quality sleep which is everything as my brain recovers. I come out after the float feeling more like me and have noticed an improvement in my balance too. I’m still stumbly and slow when I walk but it is getting better. If you’re able to help out either with a donation or transport I’d be super grateful.