I have been wanting to write about this since the night Lyndon had his first seizure, which was awhile ago now.
Lately I have been thinking about it a lot more so thought I would finally get the words down.
To begin with, I just want to say that Lyndon and I haven't spoken about his seizures much, I guess because we were just trying to move on with our life.
But I actually want to write about it, so I won't forget, and so I can look back and remember how we got through it.
The epilepsy diagnosis changed our life, kind of for the worse, so this blog may not be the funny/witty writing that you may have come to expect from me.
I'm all about telling it like it is, the whole truth, nothing watered down or sugar-coated.
So this is what it has been like for us.
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Lyndon's first seizure was completely out of the blue.
I don't remember the exact date but it was early to mid August 2015.
Lyndon and I were chatting in bed and had just said goodnight and were about to fall asleep.
Lyndon started making these really weird, throaty, gutteral and grunting noises.
I thought he was taking the piss.
I shoved him with my hand and told him to cut it out.
The noises continued.
I soon realised he was not joking around, I switched my bedside lamp on and started screaming, shaking him, trying to get him to snap out of it.
I had no idea what was happening.
I remember the complete terror. Not knowing what was happening and not knowing what to do.
The thought crossed my mind that maybe we was possessed by a demon.
His whole body was shaking and he was coughing up spit. His eyes were staring straight ahead but even though I called his name and begged him to stop, he made no reaction.
I leaped out of bed and went to call my cousin Emil who I knew could talk me through how to exorcise a demon. As I went to call him, another thought crossed my mind. Lyndon could be having a seizure.
I hadn't actually ever witnessed a seizure before so I didn't know if this is what was happening to Lyndon, but I figured that could be a bit more plausible than demon possession.
I called 111 to get an ambulance, the lady on the phone told me to call Lyndon's sister who was pregnant and who I didn't really want to bother at 11pm at night but I decided I'd rather have some support right now. She answered her phone and rushed down to our house with her husband Royce.
By this point, the emergency operator lady had told me that Lyndon had definitely had a seizure and needed to come to the hospital but that the ambulances were really busy and they might not get to us for awhile.
Lyndon's mum showed up at some point too, and we decided we would just take Lyndon to the hospital ourselves.
The seizure only lasted a few minutes and when Lyndon regained consciousness he was very very tired and confused. He couldn't understand why his family was in our bedroom.
I continually told him that he'd had a seizure but he kept forgetting and asking the same questions.
He was very emotional and scared and kept wanting me to hug him.
Seeing Lyndon like that was legitimately the scariest, most terrifying thing I have ever seen in my entire life. I would not wish that on anyone.
Once we got Lyndon to the hospital we had to wait for hours.
Eventually he got some tests and we were able to go home.
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| At the hospital for an MRI scan |
Later, he had more tests and it was confirmed that the seizure was completely random and there was no explanation for why it happened.
Lyndon was not allowed to drive for 6 months.
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Fastforward to February, 6 months after Lyndon's first random seizure.
By this point, I was still fairly traumatised by the whole ordeal. I had nightmares for the first few months of Lyndon having more seizures, although he never did.
Whenever Lyndon tossed or turned in bed, I would freeze up and be filled with terror, thinking he was having a seizure again.
When Lyndon finally got his drivers licence back, we were both over the moon.
I was so so so so happy.
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| On our way to our celebratory dinner for Lyndon getting his licence back |
I don't like driving very much so being forced to be the sole driver in our house was really hard and stressful for me. I always used to make Lyndon drive.
It was a very hard and frustrating time and I was just thrilled to not have to drive all the time anymore.
Then, at the end of February, I got a call from Lyndon's sister while I was at work.
Lyndon had experienced another seizure..
My heart stopped. He had only been driving again for a mere two weeks.
I was completely devastated.
I rushed to the hospital, and once again, Lyndon was very scared and emotional, and wanted lots of hugs.
We stayed at the hospital again for a long time and waited.
Lyndon slept and I read magazines.
More tests, and Lyndon was diagnosed with epilepsy and put on medication.
No driving for one year.
You cannot imagine how uspetting this was for both of us.
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It wasn't long after Lyndon's epilepsy diagnosis that he was made redunant from the building company he had been a part of for the last 5 years or so.
I was forced to beg for more shifts at the Cafe to try and cover our living expenses, now that Lyndon was not working.
Lyndon had always made twice as much money as I did, so him losing his job and not being able to drive was a massive blow.
We didn't think he would find another building job easily with his medical condition, not being able to be up high on ladders or scaffolding, or being able to use dangerous power tools.
He also couldn't drive himself to work which was a huge inconvenience for everyone.
I was lucky enought to pick up more shifts at work, but our savings took a dive.
We were no longer able to save any money, instead, the money that I made would be used for bills and living costs.
Lyndon and I were in the process of buying a house, and Lyndon's second seizure meant that we had to pull the plug.
We would not be able to afford the mortgage repayments.
It was really really heartbreaking.
We had always been self-sufficient and independent, now we were not able to buy the house, I wouldn't be able to get a dog, Lyndon had lost his job, I had to work a lot more and be the sole bread-winner even though I was still having health problems.
It was very stressful.
Lyndon eventually got a job working at the wharf, but it was less money and he didn't love it like he loved building.
We are still very grateful for the work, but it's definitely not something he would have chosen if he still had his ability to drive and build safely.
The last eight months have been some of the hardest I've ever faced.
Our life has basically been put on pause.
We have not been able to buy our house, or go overseas like we had planned.
I had been begging for a dog since we got married, but we were not able to get one until we can support it and ourselves.
Lyndon cannot do what he wants to do because he isn't allowed to drive.
He has all these little projects he wants to do but he can't because its too much effort to get someone to drive him.
He has been greatly hindered by his reliance on everyone else.
It has been really hard on him.
We are forever grateful to all the people who have given him rides to places; Stu, Elyse, Royce,Jack, the guys from his life group, his workmates from the wharf, and especially his Mum.
If I couldn't take Lyndon somewhere or I was at work, chances are his Mum would take him,
She has been a massive blessing and we are really really thankful for her.
So now we are just waiting.
Waiting for our lives to begin again.
Waiting for Lyndon to regain his ability to drive, to get another building job, for us to finally buy this house, for us to get a dog.
I hate waiting.
Lyndon and I don't talk about how hard its been. I think its because we're trying to put on a brave face, to get on with our life (or pretend to), to act like everything is okay.
Don't get me wrong, I KNOW that things could be a lot worse.
People have it much worse than we do, I do acknowledge that.
But just because others have it worse, doesn't mean that we don't also struggle with our current situation.
I have been so sick for the last five months, maybe its all the stress from this, maybe its something else.
I know that things will work out eventually, that everything happens for a reason.
I hope one day we can look back and say "Haha, remember that time you were diagnosed with epilepsy and it completely messed up our lives for a year?! That was hilarious"
For now, we will just keep waiting and doing the best we can.
Lyndon will have his licence back soon.
I can count the months on one hand.
Thank you to everyone for their support, and if you've managed to read to this point, good job.
And thank you, as well.
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| Lyndon sitting in the back with Ace, since he's not allowed to drive |
If you want to see an example of what it was sort of like watching Lyndon have a seizure, you can watch this clip of Sybil from Downton Abbey having a seizure shortly after she gave birth:
https://www.youtube.com/watch?v=Xx6Jvu3idPE
