Ceecee’s charity climb for Epilepsy

Hey everyone! Firstly thank you for coming to check the page out. That enough is appreciated.

My name is Caitlyn, although I’m best known as Ceecee to most folk. I’m 23 years old and I’m from Glasgow. What I’m here to talk about is something that has taken what seems like a very long time for me to speak about. 

In June 2020 I was sent for an MRI scan on my brain after being admitted to hospital from several seizures and black outs. These had been happening since October 2019. I received the results of my MRI within less than 24hrs and they were abnormal and I was diagnosed with a rare  condition called an Isolated Focal Cortical Dysplasia in my brain. Brain cells, or “neurons” normally form into organized layers of cells to form the brain “cortex” which is the outermost part of the brain, that also manifests with drug-resistant epilepsy. Basically there is disorganization of these cells in a specific brain area leading to much higher risk of seizures and possible disruption of brain function that is normally generated from this area. This brain condition also meant that I would more than likely have epilepsy that would be drug-resistant, meaning that medication would be very difficult to control my seizures. (I hope that made sense if not give it a Google, it’s rather interesting). 

Due to this my black outs and seizures rapidly increased and found out these black outs I was taking were actually another form of seizure called an Absent seizure. For anyone that isn’t sure what that is, it’s basically when a person stops all activity and stares. This can also be mistaken for day dreaming but there is usually zero movement and zero awareness of your surroundings. 

I went into lockdown healthy, with a job, studying, even ready to get driving when we came out. I never really did come out of lockdown. For the past 2 years I didn’t quite understand just how unwell I was. I was limited to my room most days, I was taking up to 12 seizures some days. I also suffer from non epileptic seizures and getting any sort of therapy is near impossible. Risks of brain damage and strokes. No one could ever understand this unless they are going through it. My whole world was turned upside down meanwhile being in denial. I ended up severely depressed, anxious, I was on so much medication that the side effects alone was enough to keep me in bed. I didn’t care what my illness was doing to me but what it was doing to family, friends and my partner. It was killing them everyday with worry. Every day they would wake up they would be prepared for the worst. My mum would check every morning to make sure I was breathing before she came too close to my bed, I was petrified to see the look on her face every morning. She was even more petrified at the risk of find her daughter dead in the morning. I wish I could write everything in detail just to show people how serious seizures and Epilepsy really is. I wish I could make people understand more, so if you made it this far? Thank you.

The feeling of waking up on the floor and seeing the look on on my family and friends faces, seeing them in fear because they are waiting to see if I even know who they are. Shouting and screaming for my mum to come save me. The deep degrading feeling of waking up in the most unimaginable personal situations, that was one of my lowest points. I remember sitting on the floor staring at myself in the mirror that night. I was staring at myself for so long and tears were streaming down my face but I wasn’t crying. I didn’t even feel like I was in my own body. It was almost as if my soul had been punched out and I was sitting behind myself. Everyone in my life was on constant high alert, I actually remember when I was first diagnosed my friends all took a first aid course. I don’t think I’ve cried like that in a long time. I have a debt to all the people  in my life and Quarriers that I’ll never be able to repay but this climb is something I can do. Waking up from a seizure, it almost feels like you died. Like you’ve been gone for a moment but you came back. The look on peoples faces will haunt me for the rest of my life. People are scared of seizures but please put your opinion to the side for a moment, please stop assuming. Please stop using the word “fit”. The word “Seizure” is not a bad word. Although it can be frightening, please use it, it’s more respectful. Please stop assuming because a person has been taking them so long that they can deal with it. It is so frightening. Please, please stop jumping to drink & drugs. 3% of people with Epilepsy are photosensitive. It is the LEAST COMMON TRIGGER FOR EPILEPSY. Please stop flashing lights in our faces, It’s patronising to the people that have to suffer it every day.

So now let’s move on to the real reason that I’m here. On April 1st 2021 I was admitted to a centre/hospital called The William Quarrier Centre. It was one of the most mentally challenging things I’ve ever had to face. This place is ran and funded by the charity Quarriers. On my arrival at the hospital I was beyond scared, you couldn’t write this. I’d barley been leaving the house never mind staying in what seemed such an alienating place. I was in the hospital for around 4 weeks. In this time I undergone a lot of medication switches to see what worked for me, I had an EEG test on for days which included me having loads of wires glued to my 

scalp, around 24 to be specific. I was monitored 24/7 to make sure I was as safe as could be. 

I was able to see a therapist who spoke to me and for the first time it was as if someone really understood. I remember getting back to my room and sobbing for hours because for the first time in two years I was able to express everything I had been feeling. The help and support I received from both staff and patients were beyond anything I could have asked for. I was the youngest in there and I felt so vulnerable and alone. I left there with friends for life. I remember arriving and there was purple balloons in the lounge area, they were everywhere. I asked one of the nurses why they were there and she replied “purple day”. I had absolutely no clue what that was but I just nodded and said cool.

This beautiful place is completely charity funded. They have a total of 12 bedrooms to help support and help people that don’t have control over their seizures. It wasn’t until after leaving it hit me that I really wasn’t okay. This place helped me to start gaining some what my life back, even if it’s just a walk or getting into the shower and washing myself. Even if it’s drinking tea out of a safety cup. My seizures are controlled to an extent now where I can sometimes take my dog a walk again (if you know me you know that me and my doggo are tight asf). I can get on the odd bus or train, I can go in baths again, no more sitting down in the shower every day. No more worry every minute of every day. Before the William Quarrier centre we received no help. There was nothing put in place and my mum did it all on her own. Thank you mum, you’re my hero and idol. I hope to be half the woman you are.

I wanted to give something back to the place that helped me to regain my life. So for purple day this year I’m doing something that may not seem like a lot to people. On March 26th this year I plan to climb Ben Lomond. To the exact date this time last year, I was crawling to the bathroom in the fear of standing up and hurting myself, now I’m going to climb this hill. It’s over 3,000ft and 974m I’ll be walking 11km and will be doing 60 squats when I reach the top. I’m about to do the biggest thing I have done since 2019. My goal is to raise at least £500 (which I hope to exceed) to give back to quarriers, in the hope that more people can receive the care and help that I did. I don’t know, I really do not know where I would be right now if it wasn’t due to this amazing charity. Climbing Ben Lomond is something that has stuck with me since the day before i went into hospital. My friends took me to a Loch where the hills were high. I said to my mate “one day I’m gonna get to the top of a hill like that”. That one day is finally here. I’m training to build my energy up again so I can get through this on my own. If you have taken the time to read this all I can say is thank you. I don’t expect everyone to donate but 1p or 1 share can make such a difference. I’m doing this not only to raise money but to raise awareness about just how serious this illness is. Purple day is the biggest day out of the year to help raise money and awareness for people going through exactly what I’m going through. There’s no worse than others here, there’s no such thing as a “more serious seizure”. Will you help me to raise money for this amazing cause? Will you help me to raise awareness? Will you help me to break the stigma of seizures?

Thank you Quarriers, you helped me take my first step in getting better. Everyday is still such a mental and physical challenge but I’m ready to start being me again. Things haven’t drastically changed, I still have my really bad days but I’m further in my mind than I could be and I’m proud of myself for that. I’ll never be more grateful for this.

Thank you for reading and thank you for your support. Thank you for your time and thank you for whatever steps you take to help protect people like me.

All the best troops! 

Ceecee x