It’s been a minute (ahem, 2 years) since I’ve written a blog and I’m now back from my blogging hiatus with a health update.
It wasn’t a deliberate decision to stop blogging. I’ve been sharing life and health updates on the gram. I just unintentionally stopped blogging and before I knew it 2 years had passed haha!
I was contacted by another post-concussion syndrome warrior recently and she’d found me through my website. And it reminded me why I started this website. Yes, it was to share my brain injury recovery journey because I was shit-scared and needed people around me to really understand so they could help me.
But bigger than that, I did it because living with post-concussion syndrome is scary bananas and I wanted other warriors to know that they’re not alone on their journey. There are people you can reach out to who understand. And I mean truly understand.
And so I’m back blogging again. I’m not making any promises of what and how often I’ll post. But I hope that it’s going to be more regularly than once every 2 years. And that some of what I’m saying might relate and help you on your brain injury recovery path.
Can I get a rewind? How I sustained a brain injury
If you’re new here, hey, hi, hellooooo, greetings earthlings!
I’m AJ and in March 2018 I had a freak accident, falling off a sledge when the Beast from the East hit, leaving me with a brain injury, post-concussion syndrome.
It totally flipped my world upside-down and since then I’ve been on a long healing journey, finding my sparkle again as AJ v2.0 while trying to manage all the difficult symptoms that come with a brain injury.
Living with a hypersensitive brain
Since my accident I became very hypersensitive to sensory stimuli. You know if you get a fright you might do a little jump and gasp? Well my version of that is my limbs jerking up into the air involuntarily when there’s unexpected sensory stimuli. I call this “pinging”.
They ping up into the air so suddenly and I have zero control of it. Most of the time it’s a leg and an arm together. But when I’m lying down and it happens it’s sometimes both arms and both legs. I couldn’t make my body move that fast if I tried to.
I’m affected by every sense except for taste and smell. Noise is the worst one and it can be from the simplest little things. It can be a mobile phone getting a text or phone call. Either with a sound or vibration. That’s why my friends and family know to put their phones on silent when they’re with me.
It can be a dog barking. Not fun when the other day I was sitting at a bench and the leg went to jerk up but couldn’t because of the table at the bench. Totally bashed my knee. It can be birds squawking. Children talking. A knock on a door. An alarm going off. An explosion on tv.
Literally any sound that you hear that you take for granted you can hear and it won’t affect you. It can affect me.
For other senses it can be someone touching me unexpectedly like picking a hair off my clothes. It can be a movement I don’t anticipate like someone passing something across a table.
All these things that might seem silly little things to others but to my brain they are a big deal and have a big effect on my body. It doesn’t happen every time there’s unexpected sensory stimuli and so what might not trigger me one minute might trigger me later that day.
If I’m in an environment where I am in control of the sensory stimuli, life is kinder but even at home there’s no escaping it and I can’t live in a dark, quiet bubble for the rest of my life. Or ask a genie to return my brain to the state it was before my accident. Oh, I wish!
I thought the brain injury couldn’t get any worse
During the global coronavirus pandemic there was a lockdown from March 2020 and a few months later my health got worse and I ended up in hospital.
I got a bad headache and then my limbs started pinging with every piece of sensory stimuli. My speech went incredibly slow and I could barely make any intentional movement. An ambulance was called and I thought there was something really serious wrong.
I couldn’t be touched at all down one side of my body. The paramedic had to come and sit next to me in the ambulance as every time he spoke to me from behind my whole upper body would ping from lying down to bolt upright. My legs were strapped down thankfully.
In the hospital it continued throughout most of the night. I was seen by a neurologist who thought it may have been of a functional neurological nature triggered by my brain injury, meaning that the brain isn’t operating the way it’s supposed to. Or it could be migraine related.
I didn’t recognise that it was an extreme version of what I was already dealing with because of how severe it was.
Either way, whatever it was that was causing it, it would be treated the same way with another medication added in to help me sleep better at night.
I thought that what happened would be a one-off and that my hypersensitivity levels would go back to how they were before that night. But they didn’t. I continued to have more and more of them and I was referred to Neurology for it to be investigated by a movement disorder expert. The theory being that my brain injury had triggered some form of movement disorder.
Eventually after a really bad spell of them I was seen by Neurology a year ago. I then had various tests done including an MRI, blood work and an electroencephalogram (EEG) which is a recording of brain activity. During my EEG I was being videoed as I reacted to different sensory stimuli. And it was really tough going.
Not the diagnosis I was expecting
I saw my neurologist for the results a couple of weeks ago. It had just turned 5 years since my accident which was a hard milestone for me but I went into the appointment feeling cautiously optimistic.
I didn’t care what the diagnosis was. I just wanted help to have a better quality of life. I thought I’d go in there and get a diagnosis, whatever it may be, and a treatment plan. But I wasn’t prepared for what was about to happen.
Plot twist. There was no diagnosis.
The MRI was fine. There was no change since my last one so structurally the brain is fine. And there wasn’t any sign of epilepsy or seizure activity from the EEG. My neurologist told me that we really have to keep all possibilities open as to what it could be. And that it may be something that could have happened anyway without the brain injury.
She asked me what I wanted and I told her that I’d been living with it for so long that I’m not expecting there to be a magic pill to make it all go away. But I want my brain to calm down and not be so hypersensitive so that it doesn’t have such a big impact on my life.
The only way to stop it completely would be medication to sedate me so I’d be sedated all the time. And that’s not the life I want to live.
Going into hospital for more tests on the brain
The plan for the next stage is to have me admitted onto the Neurology Ward for 2-3 days for more investigations. I’ll get a lumbar puncture, be videoed, have more bloods done and and any other tests required. My Neurologist will get the opinion of her colleagues who are also experts in movement disorders.
I’ll admit I’m feeling anxious about going through these tests as it took me 3 weeks to get over the EEG. But I am willing to do whatever it takes so they can find out what is wrong with me. And I really hope that there will be treatment to improve my quality of life.
My health is no laughing matter
One thing to note is that when I’m triggered I’m not frightened even though it looks like it. I think it’s more a case of me frightening other people around me when they’re seeing it for the first time. I do tend to laugh it off and I know that people can use humour to mask how they’re really feeling. But to me the way that it affects my life is no laughing matter.
It breaks my heart that 5 years after sustaining a brain injury I still struggle to be around my family. I can’t show up for the people that I love in the way that I want to. I’ve missed out on so many family birthdays because I’ve just not been well enough. I know my family understands but still, it’s hard.
We gather together as a family for Sunday afternoon cuppies usually at my Mum and Dad’s. But I haven’t been able to go regularly for a very long time. I can be there for a wee while with pinging limbs here and there. Then as time goes on the sensory overload is just too much. My speech goes really slow and I need help to get out of the room. It becomes really difficult to use my crutches and get my legs to move the way they need to so I can get away from the sensory stimulation.
Then depending on how bad it is I need to sleep before JP can drive us home. And trying to get back into the room is literally like trying to walk into a brick wall. When the door is opened it feels like there’s a wall of noise and when I try to move my legs in that direction they just won’t go. Noise cancelling headphones help to block some of the sound.
After being in a high sensory stimulating environment like that my brain just needs to rest. So I put an eye mask and my headphones on and listen to a meditation on Insight Timer in the car going home. But my limbs keep on doing their own thing and I’m triggered a lot. JP needs to cuddy-back me up the stairs to our flat because I’m not able to do it myself.
This is my normal
I get pinging limbs throughout the day every single day. It’s just part of my normality. But when my brain is extra hypersensitive the recovery can take anything between days and weeks. And so it makes life really difficult.
And that’s only part of my health issues. On top of that I have all the symptoms of my brain injury to deal with.
Chronic pain, cognitive difficulties, memory issues, speech difficulties, crippling fatigue, issues with my fine motor skills meaning things I’m holding fall out of my hands. Too many times I miss my mouth. An adult bib could be handy haha! Oh, there goes that humour again. Even trying to do dishes I’ve watched as a knife falls to the floor. JP has to do all the meal prep as I’m a total liability!
For the most part this is hidden by my dark sense of humour and my positivity. But it’s still there and it’s still hard.
My hopes for the future
It’s been a tough 5 years but I’m not a quitter and I won’t give up hope on my recovery. It’s such a long time and I’ve been through a lot of rehab to get to where I am.
I just have to keep believing that it can get better. And I’m hopeful that these tests will be a leap forward to getting me there.
Because I just won’t accept that this is it.
Over to you, warriors!
Do you or someone else you know have involuntary movements too?
What would you like to see me talking about on my blog?
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,