You are stronger than you think
In this post I am going to be talking about my story of telling my friends and how I think the best way to explain the condition is to make people understand it as well as possible.
When I was first diagnosed I didn't tell anyone about my hospital appointments, my diagnosis. The only people that to my knowledge knew where my family. However obviously my closest friends knew something was up as I was missing a lot of school, due to hospital appointments and feeling unwell. But back when I was eleven I was confused about my condition, I didn't even understand what was happening so how could I explain this to someone else?
It took me a good three/four years to start understanding and accepting my condition which therefore meant I was ready to talk to my closest friends about it. These where my best friends, who'd Id been friends with since I was a toddler. When I told them, they where supportive and caring. Wanting to help in anyway possible and have continued to be like this 6 years later.
One major thing I have learnt since being diagnosed, is you really find out who your true friends are. The ones which have stuck with me through my darkest and hardest times, I appreciate so much. I strongly believe its not how many friends you have its the quality of the friendship. Also when you're going through a difficult stage in your life its so important to have your friends around you to support you.
How did I explain it?
I told them the facts about my seizures, what happens during the seizure. Also my triggers so I need to get enough rest and sleep, also not getting too stressed. An important aspect to tell them is what to do when I am having a seizure so they don't panic when you're having one and they're prepared.
I think the most important thing is make them understand as much as possible. Also because I use to have really bad anxiety. I also explained how that made me feel, so if i didn't want to attended a sociable event it wasn't because I was being anti-social it was due to how my anxiety was making me feel.
I am fortunate to have the most amazing and supportive best friends, who have been on a journey with me.
I know its difficult talking about it to people but honestly talking about it to the people closest to you will help you hugely.
You're going to have to give me the benefit of the doubt as I am not a doctor who knows all the scientific side to epilepsy but I will try and explain as best as I can what absence epilepsy is, through my personal experience of it.
Absence epilepsy is where you loose awareness of what is happening around you, people call it 'blanking out'. Mine are fortunately controlled at the moment with medication. But when I did have them I would have no pre-warning of one coming, I would just be having a conversation with someone, for example and then 'blank out'. I didn't fall to the floor or jerk. I would just look into space, couldn't respond to anything, anyone would say to me until i came out of the seizure. My smaller ones would last 4 - 10 seconds. Then my longer ones where I have fallen, would last 5 or so minutes or so. Having several of these seizures every day became really frustrating and would knock my confidence hugely.
The main triggers for my seizures is if I get stressed, or anxious in a situation. Also if I am sleep deprived or have messed up my sleeping pattern. Basically any abnormal pattern towards the brain will increase mine. Therefore i have learnt to try and stay as calm and not stress about situations as much as possible. And make sure i get enough sleep. If i did have a bad night sleep then I would rest the next day as i know i am at a higher risk of having a seizure.
How do I feel after a seizure?
The smaller ones, I would feel slightly dazed but could come back into conversation and continue the day. However the longer ones i would have to be taken to hospital, i would feel very spaced out, confused, have an awful headache and just want to sleep.
The advice I can give on trying to minimise your seizures is understand what sends you're seizures off, keep note of when you have them. where you stressed at the point? If so try and reduce that. I noticed when I controlled my anxiety more, it reduced my seizures. It is a tedious battle but worth it in the long run.
Also medication, I will many blog posts on this. But briefly I know the struggle of having to start a new medication then experience side effects, not knowing if its even going to work. Having to increase doses of one then decrease another. But the playing around with them will finally get you on the right path. Yes it took me 6 years to figure out the write mix and dose of medication and yes I experienced horrible side affects but they go and it was worth it. So keep going!
Most people think that epilepsy means flashing lights, cause people to having seizures. This is true however there are so many other types of seizures and triggers for them.
I have absence epilepsy which one day just decided to develop in my brain at roughly the age of nine. My seizures are not set off by strobes or flashing lights. my main triggers are stress and sleep deprivation. Which makes uni really easy...
Other triggers are if I'm anxious for a situation, which was not good when my anxiety was bad as it was this horrible cycle of anxiety is worse means epilepsy is worse, just one big mess!
However over the years i have learnt how to deal with it. I take each day as it comes and I manage my life so i keep the stress as minimal as possible (which yes is hard when you're studying a degree but it is possible - i will later be writing a post about methods which help me with this). What is vital to me is sleep, if i don't have a good night sleep i am then at a high risk of having a seizure the next day. Therefore I make sure when I go on nights out or to parties I make sure i do nothing but rest the next day. You can still do what other people do and have fun you just need to be more organised and limit yourself. I can't go out every other night at uni like my flat mates but I can still go out and have fun.
The anxiety I have been on a huge journey with and have realised how important it is a keep that calm so my epilepsy is. I have learnt methods to stay calm. Also learning the triggers for my panic attacks and how i find keeping busy and my mind active distracts me from it. There is so much i could write about anxiety so shall be doing many more posts about it.
My first drug that i took was lamotrigine - i remember the first time i took it. I was on holiday with the family. My parents said it would stop me feeling spaced out and sick. So i thought fab!
The lamotrigine controlled the bigger seizures but i was still having the smaller ones on a daily bases.
The first test i have was a hearing test as my parents thought i wasn’t responding to them (this was actually because when i had an absence seizure, i couldn’t hear). The hearing test came back with me having perfect hearing.
This then lead on to exploring the neurological conditions. I don’t remember the first test or talk I had with my consultant, the mass of them just turned into one big pile looking back. I don’t really like thinking about them as I was so scared an now 11 year old girl having these weekly hospital appointments but not knowing why, I just remembered being so confused. To me i thought i was fine other than feeling spaced out.
After about 9 months of various test and if you’re epileptic reading this you know the kind I’m on about long, horrible and the talks with the consultants seemed to last a lifetime. I remember like it was only yesterday being diagnosed. My dad and I where stood in the entrance of the hospital. My mum had gone to see the consultant alone. I remember her walking down the stairs, trying to hold back the tears then saying to my dad they’ve diagnosed her with absence epilepsy. Still then even diagnosed i didn’t know what this meant, i just carried on as a slightly confused but normal 11 year old.
Little did i know the battle i had ahead of me with this condition. But the most important thing is you have to keep going as it gets better and you are incredible strong for the fight you are dealing with.
As i have said previously this is not a blog for attention I have been thinking about starting up a blog to raise awareness over the past couple of months, as epilepsy is a condition which is hardly spoken about, nor are we educate on it. I strongly believe that if I had been educated on it before i was diagnosed I would of felt a lot less scared and confused, making my journey easier. I really hope this blog also helps people who are epileptic or have anxiety to relate to as i know its scary but it gets better, trust me. So heres my story of my first sezuires.
My first big seizure – Ten years old, it was roughly about five days prior to christmas day. My sister and i had gone into waitrose to get some food. I remember this feeling of my body telling my sit down, as I was walking around the supermarket. Which I completely ignored as i thought how silly my brain was being. Then I vividly remember turning onto the dairy section and I felt this sudden feeling of needing to throw up, then before I knew it I was looking up at the bright lights of the ceiling surrounded by people looking over me.
I felt confused, sick and spaced out. Everyone around me thought I had fainted. I then got taken to A & E they checked me out and saw ‘no problems’ so I was sent home pretty quickly. All i wanted to do was sleep, I had an awful headache. For the following few days I slept and had no energy.
My next seizures that I remember where the ‘smaller ones’ as i call them. I just remember being in year 6 at primary school and the teacher would say something and its like I went deaf for 5 -10 seconds. Then I would feel sick and spaced out for the most of the time as I was having these on a daily bases.
This was my absence epilepsy I was having several every day but no one knew what it was, my parents where uneducated on it, teachers didn’t even know!
At the age of 10 this is when my life changed, i started to feel like a different person feeling spaced out and sick most of the time.
Above is a picture of around the time when my epilepsy started
Hello My name is Jasmine and If you have read my section on my blog ‘about me’ it gives you a brief explanation of my condition and my blog. However I have so much more to say. This blog is to raise awareness and for people who have epilepsy to relate to, or even anxiety as over the years i have experience extreme anxiety and panic attacks which i will also talk about on this blog. I will also be posting about my daily life, what its like to live with epilepsy. Being at university is slightly more of a challenge with someone with epilepsy so i will also be discussing that in my blog. Another section i would like to talk about is advice on living with epilepsy and anxiety. As over the years i have learnt many methods on how to deal with it and the best way to help control my seizures and minimise my anxiety. Therefore I hope the tips and advice can help you in some way
Hi welcome, to my blog! Come follow my journey and read my experiences of living with epilepsy.