Seizure Season - Living with Epilepsy.
I have epilepsy. I don’t remember a time before epilepsy. Although not officially diagnosed until I was in my teens I've had “convulsions“ since I was a baby.
I want people who have epilepsy to know you’re not alone, and those who don’t to understand it’s not just a quick body shake, a nap and a bit of a head ache.
There are many types of epilepsy. I’m not a doctor so I’ll only describe what mine are like. Some people will have seizures daily, weekly, monthly, rarely. Mine usually come at a certain time of the year and over the last few years they’ve got to a whole new level of ‘spectacular’.
I have absence seizures AKA the Petit Mal. To you, that’ll look like I’m day dreaming. To me it’s like I’m stuck in my own brain and I sometimes I have to internally shout at myself to “snap out of it”. I have these all the time and they get worse with stress or tiredness. I feel myself “falling” into my own head. I'm conscious, I can still see and hear you but it’s a bit like dunking your head into a bowl of water. Once I’ve shaken it off, we’re good to carry on. We could have a meeting and you’d never know I’ve had one. I’ve been known to turn into what can only be described as a zombie. I can talk and respond to you but to you I won’t be “myself”. I can wander around (sometimes I’m butt naked because I don't necessarily have control) and I probably won’t make much sense. I don’t remember these ‘episodes’. My body may as well have gone out and left my spirit/soul/personality behind.
Then we have the spectacular seizures. The Grand Mal, AKA the tonic-clonic. The massive shaky ones where I turn the colour of a Smurf, foam at the mouth, bite through my own tongue, fall over, smash my head off of things, rip my own finger nails off and sometimes piss/crap my own pants.
Sorry, I should have warned you it isn’t pretty. But that’s not the best part!
If my seizures aren’t controlled or if my body decides it’s really going to test itself I’ll have multiple seizures one after another, over hours. This is where things go from head to heart. Imagine your body being in cramps for 5-10-15-30 minutes... Can you image the pain? The body isn’t designed to deal with that so the heart can be affected. This is cardiac arrest territory. Your lungs shutting down and your brain being starved of oxygen.
I’m talking being ripped away from your loved ones and being taken into resuscitation. Don't get me wrong, I’m totally oblivious to it all. (The realisation comes later).
But whilst all this is happening the burden is placed firmly in your loved ones laps. Will she pull through? Won’t she? Will she still be HER? Will she be able to remember anything?
Epilepsy doesn’t stop at the seizures. That’s just a small part. I’m not worried about having epilepsy. I’m cool with that. For many years now I’ve even come to peace with dying. Yep. It’s a stone cold sober reality that my heart and respiratory system may just think ‘fuck it, we’ve had enough'. My family know that if there is a risk of me being brought back as anything less than myself then it’s a big DNR for me. Do Not Resuscitate. I don’t want to be a prisoner of my own body. Ever.
Well this is turning out to be the best fairytale you’ve ever read, right?
So what happens after? Saying all is “well” and I’m stabilised, I’ll have a nap. Few hours usually gets me through. I’ll wake up drained, in pain and unable to tell where I am or why. I’ll usually panic and pull out my IV. I’ll then scan the room for people I know. My brain will tell me it’s safe and I’ll either eat and go back to sleep or I’ll just go back to sleep.
My brain, my whole body, has just been through a fight with itself. It’s only mission now is to rest and recover.
The next time I wake up I’ll be in pain, my brain will feel like mush and people will be testing me. They’ll want to know things like my name, the date, who the Prime Minister is. They’ll want to see if I remember people, events and places. I’ll be asked to write things. To make sure I can still do simple things like hold a pen.
When I was about 15 my name was ‘Dionnnnnnnnnnnnnn...’ My brain had got stuck in the ‘double n’ loop and I just kept writing ‘n’. Just in case you didn’t know, my real name is Dionne.
Over the last 2-3 years my seizures have become worse and more life threatening. I don’t sleep like a normal person any more, I don’t remember the first 6 months of my relationship to Mike properly, my personality changed, I was diagnosed with depression and anxiety and I was self harming. What usually takes a few days to “get over” took me months. I lost relationships, friendships and myself.
I pushed people away and some of them let me. The people I have in my life today are less in quantity but more than I deserve when it comes to quality.
During my last hospital visit my loved ones witnessed 4 people die around me as I fought so hard for my life. I was then put into the ERU ward. That’s the Elderly Receiving Unit. Let’s not pussy foot around. That’s where old people go to die.
Again, I fought. I chose life. Subconsciously I must have known that I was not ready to die. Shitty thing was, later that year, as my depression and anxiety took hold I was thinking about how I would take my own life. 2017 & 2018 were pretty brutal if i'm honest. There are months and moments I wish I could forget.
My Seizure Season has just started. It’s usually between October to January. My friends and family start to change. They’ll watch me more carefully. They’ll say things like “I didn’t want to mention it but...” and that’s usually followed up by some sort of stress or sleep related worry.
I’m 35 years old and my Mum, partner and friends all have a tracker on me. Sometimes it infuriates me. Sometimes I want to scream and tell them to leave me the fuck alone. I get angry that I’m watched and I get pissed off that I’m treated like a child. I get angry at them and every time I regret it.
In reality, I love the fact they care. I love the fact they check in to make sure I’m still alive. So many people don’t have that luxury. I hate the fact I unintentionally put them through so much.
It stresses me out that people are worried about me. The irony that I get stressed because people are stressed that I’m stressed and going to have a seizure is not lost on me.
So, why October to January? That’s usually my busiest time of year at work, it’s my birthday, October is birth/death month for my family, then I travel to see my friends and family, more parties, more naughty food and drink, more late nights. It all adds up. And I shut down.
2019 has been huge for me and I’ve made so many changes that I hope I have finally been able to change my life so I no longer have seizures so severe (or at all would be nice).
I’m not looking for sympathy. You can give that to my loved ones for putting up with me. Epilepsy has not beaten me, it’s made me who I am. I am a warrior and I will continue fighting.
For those who witness loved ones with epilepsy, please know that if we’re mean it’s because we’re probably tired from fighting every day. Not just when we have a seizure that you can see. We may be having them "behind the scenes" without you knowing. We love you and appreciate you. If you want to talk, ask us out right for a discussion. Wrapping us in cotton wall just makes us mad. We could probably do with talking and maybe even crying or laughing about the things you want to talk about.
For all the other warriors out there. Seek help. Take time to rest. Keep fighting. You can find time to rest. You need to look after you. For your own sake and for those you love.
Stay strong but it’s ok to have meh days. Until next time,
Love, Dee x
PS - it’s 3:09am at time of writing this. Yes, I know I should be asleep! Brain is awake and the drugs aren’t working so it looks like it’s a night for a party in my head. If there are typos, i'm not even sorry.
PPS - That picture is not a replica or version of an intubation tube I found on the internet. It’s THE actual intubation tube that was used on me.
PPPS - Massive shout out to the NHS for saving my arse on more than one (hundred) occasion in the last 35 years! X