You are stronger than you think
As last week was Epilepsy awareness week I thought it would be a good time to talk how Epilepsy is so much more than the seizures itself. Therefore people can have an understanding of what it is like to live with the condition or if you have epilepsy yourself to understand you are not the only one. People unaware of the condition view it as they've had a seizure and then they're fine but please read on to understand what comes along with living with the condition as it involves so much more. Not every point below will someone with epilepsy expeierence but I thought I would discuss a wide range of the area for a better understand to raise awareness.
What it is like to live with epilepsy -
Where do I start. Firstly you have the fun experimenting of finding out if a medication/medications will even control your seizures. Then you have the joy of not knowing what side affects you could suffer from. I found when I first started both of my medications - ethosuximide and lamtorgine I struggled greatly for the first two months. As i think my body was adapting to the medications. For example - fatigue, dizziness, nausea, headaches, hiccups, spaced out. I just had a general feeling of not being able to move or function. So every time i started a new anti epileptic drug I would hibernate for the first few months. Ive been on lamtorgine now for nearly ten years and ethosuximide for five years. Even though I've been on them for so long I still experience side affects daily - fatigue, headaches and nausea. But no where near to how bad it was at the start. So my advice to you if you are just starting a medication is to stick at it as it is so worth the pain. As now it controls my seizures and I am able to live a near to normal life. And yes I might feel more tired than others i find personally it is so worth it to control my seizures.
I wont go on about this too much as i mentioned it in the last paragraph. But the fatigue that comes along with it can be challenging. I have to plan my week to the detail of if i have a busy day tuesday i will be too tired to do too much on Wednesday. And also my main trigger for my seizure is when i get too tired so i have to make sure i have a balance of living my life but not getting too tired. As you learn about your condition you learn how to adapt your life around it and learn a safe routine.
Mental health -
I went into great detail in my last post about mental health, so ill keep it short. But overall a large percentage of epileptics will experience a mental health condition. I have and occasionally, still do experience anxiety, panic attacks and depression. They have been hugely challenging and taken over my life to the extreme of i was too scared to leave the house. However by seeking help and coping mechanisms I managed to control it and live a normal life. Where I can have an education, go out with friends and live a normal teenage life. If you want to find out more about this topic please read my last post going into detail about mental health.
I started to learn to drive at 17. But three months in I had to surrender my license due to a seizure. This is so painful and makes you so angry as you feel epilepsy is winning. It is so frustrating not having that independence that all your friends are allowed to have. However with patience I managed to control my seizures again and learn to drive again. So again you may have bumps and it may be a big more challenge but patience and determination will get you through it.
Loved ones -
I could go on and on about this topic but I'll try and keep it short. I have done many posts in the past about family and friends so please read them for more detail. Not only have you got to learn how to live with your condition but your family, partner, close friends have got to understand. This can be hard as i spent years withdrawing myself and not talking about how i felt. I know if i had opened up sooner i would of been so much happier and as would my friends and family.
All of a sudden your life changes for ever. Yes, that sounds super dramatic but its true. You're given this diagnose which you are clueless and uneducated on. It messes with your head an emotions. You have hundreds of thoughts going round in your head. You have gone from being a ‘normal’ healthy person to suddenly someone who is having seizure and why? It takes a while for you to get your head round it and for me years to accept it and how it is going to affect my life forever. But over time you learn to realise its shaped you positively, it makes you a strong, determined and a person who appreciates life greatly.
A couple of posts back I wrote a very detailed and informative post about how epilepsy has affected my education so if you're interesting reading about this area please take a look. But briefly it affects you education as you have to take time off school for hospital appointments and tests, feeling ill from the medications, seizures or struggling mentally. It is a viscous cycle and in my case I found a lot of teachers didn't understand as they where so uneducated on the topic.
Sudden unexpected death in epilepsy -
This is a tough and harsh one to discuss but it is reality. Sudden unexpected death in epilepsy is when a person with epilepsy suddenly dies, with no other causes present. It is scary in the sense you never know if you're going to have a seizure which you could never wake up from or when you fall asleep you dont know if you'll wake up. But that is the negative way to view it, i look at it as live every moment. Do what makes you happy and do everything you want to do in your life now, set goals. Dont’ be scared, keep yourself and body healthy.
Sleep patten/not being able to stay up late -
Sleeping for me is important and making sure i don't mess it up. As if i have a bad night sleep, by bad night i mean only a couple of hours less than normal then i have to cancel everything the next day as i’m at such a high risk of a seizure so i have to rest.
I hope this post has helped people relate and raise awareness, please don't hesitate to email me if you have any questions or just want someone to talk to about the condition - firstname.lastname@example.org
As it is mental health week I thought it would be a good time to talk in more detail about my story with mental health, how I feel about the topic and the importance of raising awareness. I will be rawly talking about my experience with mental health. But how if you are suffering you can find hope and you can get back into the ‘normality’ of life, it won’t last forever. So this post may seem to start of negative but believe me it has a positive ending, so please read on.
Firstly I will explain how anxiety, panic attacks and depression made me feel mentally and physically, I hope this allows people to understand this seriousness of how this can affect people or if you are suffering how you're not the only one. Then I will go on to explain my journey through mental health and my views on mental health.
How did/does anxiety physically and mentally make me feel?
I normally get panic attacks in crowded places or if i get too stressed and things just get too much. I feel like the world is spinning around me, my heart is going at a thousand miles per an hour. My breathing gets heavy causing me to feel dizzy. I worry that I am going to faint from breathing too fast. All i want to do is run away and get away from this horrible feeling. I sometimes feel like I am going die, it is the scariest feeling. After I feel mentally drained, i can do for days. I feel spaced out and weak.
You feel there is no hope, you see no positivity. It is so much effort to get out of bed in the morning. Not because i was lazy. But because you didn't see the point and you are so mentally exhausted. You cancel plans with friends, family. You isolate yourself from the world. Your body feels empty…
When diagnosed with epilepsy at age of eleven, I became a very scared, confused and worried child. I was constantly on edge about not knowing when the next seizure would happen. This therefore caused me to become incredibly anxious and panic. At the time I was clueless over the fact that i was experiencing mental health conditions. Back then it was not spoken about in as much detail or in general was an unspoken about topic, as it is now therefore as an eleven year old I just thought there was something wrong with me.
After experiencing anxiety and panic attacks for a few years I then developed depression. The combination of having uncontrolled seizures, missing a lot of school and not being able to experience a ‘normal’ early teenagers childhood. Lead to constantly feeling of being down and not having any enthusiasm in anything. Again like the anxiety I was unaware that i was experiencing this. Meaning through years it built up more and more. Where I would be too scared to leave the house. Until the age of roughly fourteen I was missing so much school I was refereed to a councillor. Personally the first councillor I met I felt didn't help me greatly but at the time I was too scared to talk about my feelings, therefore it was a challenge to improve how i felt.
As time went on my epilepsy became under control, therefore my anxiety was reduced and i was fortunate that depression went. I got back into school, thinking I was fine.I continued to ignore the fact that the anxiety was still at the back of my mind, I was still so unaware at what was happening as to my knowledge no one was experiencing how I felt as people didn't talk about it. Then when i was in sixth form so the age on sixteen to eighteen I went to see a therapist who specialises in Cognitive hypnotherapy which helped hugely. And was like a revolution! I had an understanding behind what was going through my brain. And that I wasn't ‘crazy’ or ‘different’ it all started to make sense.
Through therapy I found out my mind was constantly on edge as I was always worried I would have a seizure. This therefore set of anxiety and panic attacks. Therefore with therapy I managed to re-train my subconscious, into turning those negative experiences with epilepsy into a feeling of calm and peace. That is was all okay and i didn't need to panic. I also learnt breathing exercises to calm my body if I felt anxious, which helped hugely. Through this therapy has allowed me to get back to normality to things that every other teenager would do, shopping, day trips out, using public transport, going to cities,full time education, going to parties and social events and so much more! Where as before i was too scared to do any of that! Don't get me wrong i still have ‘one of those days’ occasionally or when things get to much I can have a panic attack but I've learnt how to control and understand it which i think is so important with mental health. And to also educate yourself and people around you on it so people have a better understanding of what they or others could be going through.
If I look back to six years ago when I was too scared to leave the house and constantly on edge. I think it is amazing how far you can come if you have a better understanding around mental health and don’t be afraid to get help and talk to others about it. Whether that is a parent, friend, teacher or doctor. I know if i had spoken to someone sooner about how i felt i wouldn't of suffered in silence and would of been able to get successful help sooner. I think mental health awareness has come so far in the past few years. However i think we still have so much more to communicate and make people understand how serious this is. We are not crazy, we are people who are strong and fighting a battle in our brain everyday. So please be kind to others as you don't know what is going on behind the mask that people can hold so well. I hope through telling my story it can either help others understand what it is like to have mental health conditions or someone reading this realises they are not different, they're not the only one and how important it is to seek help.
Hi welcome, to my blog! Come follow my journey and read my experiences of living with epilepsy.