Finding My Sparkle Day 5: Thursday 8th March 2018
Today was a bad day, a fucking bad day. Hopefully the worst I will ever experience in my life.
I had a bad night’s sleep. Possibly only had a few hours. When I woke up my head was sore in a new place at the back of my head. I’d had pain with my ear in the night and ringing and felt something trickle in my ear. I was scared.
JP phoned the doctor and got me into the emergency surgery. He tells me I can go in from 9 till 10. I don’t understand. When is my appointment? He explains you turn up and you get seen between 9 and 10. I don’t have a set time. Ok, I get it now. I had breakfast in bed and then a bath. All my movements were so slow. I was shivering cold.
I caught sight of my arm in the mirror as I shook the can of deodorant before I sprayed it.
Why won’t my arm move any faster? That’s not a shake. Poor effort AJ.
Finding out I have a brain injury
JP took me to the docs. First time outside since I came home. There was blue sky. It looked so pretty but I couldn’t look up for long. It feels like the world is moving in slow motion. It isn’t. It’s me.
Going to reception JP speaks for me. It feels like he is my carer. I feel like I need a carer. He checked me in at reception. I tried to smile at the receptionist. I think she looked at me with pity. She was probably just concerned but I feel like everyone looks at me like there’s something wrong. There is something wrong.
Sitting in the waiting room the tv is on. It’s so loud. I know it isn’t to everyone else but to me it is. JP turned it down.
The doctor did various tests and asked a few questions. I cobbled together an answer here and there but JP did a lot of talking for me. I come away knowing I have post-concussion syndrome and I’m signed off till the end of next week which will be reviewed. I was glad I’d already had a brain scan on Sunday and knew there wasn’t a bleed on the brain otherwise I’d be thinking there was a more serious issue.
I just have to rest and let my body recover. I’m not capable of doing anything else so I’ll do what I’m told.
As we went outside and I held on to JP, he went to walk too fast. I can’t walk at a normal pace. My life is in the slow lane.
Feeling the full force of my concussion
I feel like the full force of my concussion has hit me at home. I actually felt better in hospital. The physical pain was horrendous until it was brought under control but it’s more manageable now. It’s my concussion I’m struggling to get my head around.
At home it hit me that I’m not going to be able to photograph my clients’ wedding this weekend. I’m gutted for them. I’ve never missed a wedding. So glad I arranged standby cover a couple of days ago and that a friend suggested I do that. I didn’t have the thought process to think about that then.
Is this my new reality?
I crash out for a couple of hours and wake from a very deep sleep. I’ve missed the weekly CMA calls. I log on to watch the replay. Cara pops in to the room so Chris can show off Luna. She is the most beautiful baby. He looks smitten. I love my work and I miss the squad but I know I’ll catch up with them soon. I hope I’ll be well enough for CMA Live. That’s 3 months away. Of course I will be. You’ve got this AJ.
My friend Sally texts to see how I am. She tells me how we met. It’s ok, she’s in my inner circle. I remember her and tell her that. She texts back to tell me she was saying that to me as a joke. I didn’t get the joke first time round.
She asks me to send her a video of me shaking the deodorant can. It’s in another room so I use a tv remote.
I watch the video back before I send it to her:
A week ago today and 5 days after my fall I got my diagnosis. My speech and movements were slow and I couldn’t shake deodorant properly.
— Anne (AJ) Johnston ? (@Annejphotos) March 15, 2018
Holy shit, is this my new reality? I look like I have something wrong with me. I sound like I have something wrong with me. In my head my thoughts are normal pace but words when they come out are slower. Who is this person?
I’ve lost my sparkle.
I’ve scared myself but I hope I haven’t scared Sally. She understands and tries to cheer me up.
I’m not ready to share this video with the world. I feel vulnerable. I don’t want everyone seeing me like this. I send it to my friend Steve. He helped treat my months of ITB pain in one session last week. Or it could have been the week before. I’m not sure. As well as being a personal trainer he’s been trained in NLP and is a huge support. I know I can trust him. He doesn’t judge me and asks me to view it as a benchmark for my progress.
I hope this is as bad as it ever gets. I don’t want another day like this in my life. I’m terrified.
What if this is my new permanent reality? What if I never get better? I don’t want this. I didn’t sign up to this.
I have to find the strength to come back stronger and fight this. I don’t know how yet.
All I know is I need to rest.
Feeling thankful for kind people
JP comes home for lunch to check on me and brings me cakes that Lois at his work made for me. He gave me the box and I cried. I just cried over fucking cake! I got bad news the other day and was emotionally numb yet here I am crying over cake! It’s the generosity of people. I’m so humbled that people are looking out for me.
Later, Peri arrives with a care package of Epsom Salts, Berocca, pizza and soup. She had to go to 3 chemists to find that salt. I’m so grateful. I ask Peri to phone my photography tuition clients that are booked in for next week and to reschedule them for April. She has a better plan and helps me email all of my clients for March. I haven’t offered new dates but will sort when I’m feeling better in a few weeks. She thinks it’s best that I don’t put any more pressure on myself with dates.
We sit back on the sofa and then I’m asking for medication. It’s not nearly time but my head is pounding. I lie down on the sofa, she closes the curtains and puts out the lights. When it’s time for pills it’s not enough. I go to bed and she sits with me till JP comes home. They go into the living room and I can hear them talking about me but I can’t make out what they’re saying.
After a while the pills kick in and JP brings me pizza in bed. It’s not even Friday and I’m eating pizza in my bed! It tastes soooo good but takes me half an hour to eat it. Everything is so slow.
Tomorrow has to be a better day
JP talks about staying home from pool to look after me tonight. I don’t want to stop him having a life. I know I’m not dying. I’m pretty sure I can handle being on my own for a few hours.
I go to sleep knowing that I will never have another day like this. I will have ups and downs in my recovery but tomorrow will be a better day.
It has to be.
Over to you, warriors!
How did you feel when you first got diagnosed with your brain injury? Pop into the comments and let me know. I’d love to hear from you!
And don’t forget to sign up to my newsletter below to stay up-to-date with my blogs and vlogs and tips for living with a brain injury.
✨ Keep sparkling one day at a time! ✨
Much love and healing vibes,