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 - email@example.com
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.
Young Epilepsy have created a campaign and survey, to provide the right support for young people at school with epilepsy. I know through personal experiences how vital it is to have that support system in place. As it affects you education greatly if the school are unable to provide a successful guidance. Today I am going to be talking about my experience of having epilepsy and the support I did and didn't receive throughout my education. I want to make it very clear I am splitting this into two sections of the different schools I went to. My first from the age of eleven to sixteen. And a different sixth form, the age of sixteen to eighteen. As they had a huge contrast in support. Secondly I would like to make clear I do not blame any of the teachers, or support people that I had throughout my education. I strongly believe they where not informed in enough detail about my condition and what it involves. Therefore this is why I am so passionate about this campaign to make sure children with epilepsy don't have to go through the struggle I went through.
Education eleven to sixteen -
My first year of secondary school was by far the hardest, I had gone from a small primary school to a school of 1,500. Therefore for any child this is a huge leap and daunting. Unfortunately during this I was also in and out of hospital due to having seizures and tests. As at this point I had not yet been diagnosed with epilepsy. Due to all of this I became a very angry, confused and a scared child. Which is why it was vital I had the support and care at school to help me. Sadly this was poorly arranged. At the end of my first year at secondary school I was diagnosed with absence epilepsy.
Continuing to miss a lot of school due to seizures, medication side affects and anxiety. Throughout this whole process the teachers seemed overwhelmed and confused about what was happening and why it was causing me to miss so much school. Both myself and my parents felt helpless in the situation. It also caused me to loose a lot of friends, therefore I didn't have the ‘normal’ social situation of a twelve year old. Go forward a couple of years and I was studying my first year of GCSEs I had become so poorly with having uncontrolled seizures, and anxiety. This combination caused me to fear school, as I felt unsafe in the environment. Therefore in year 10 (age fourteen-fifteen) my parents and I decided it would be best to be home school educated. For me this was devastating as naturally my personality is a sociable, extroverted and outgoing character. All i wanted was to be like all of my friends and have a normal school experience. Being home school was challenging however it allowed me to build my confidence back up and i started another medication which successfully controlled my seizures. Therefore I was able to go back into school part time for my final year of GCSES, i was still scared and nervous but it was a huge break through to have my seizures controlled and it allowed me to concentrate on my education.
I strongly believe that if i had a greater support system at my first school I would of thrived better in my subjects and left with more GCSEs. However this is not the point, what i want to make clear is the teachers needed to be educated and have an understanding on what to do when a child had epilepsy and how to support them. It was the hardest period of my life and I think a vital part of any child's life which is why we need to make sure a successful support system is put into place.
Education sixteen to eighteen -
For sixth form (age sixteen to eighteen) I wanted a fresh start. My seizures where currently being successfully controlled. However my parents and i knew we still needed to find a sixth form where they had a strong support system. Fortunately we found one. And i can not express how much this helped me and got me to where i am today. It was like a break through after six years of having what we felt was little to no support at school we finally found a school that was willing and understanding about my condition. Therefore this caused me to thrive in sixth form. I created an amazing group of friends and was finally living like a normal teenager. This was all down to the teachers being supportive and understanding. They would do everything they could to help me, when i missed school due to medication side affects or fatigue. They would always accommodate ways around it. Due to this fantastic support i was provided with it allowed me to get into universities to study my dream course which I never imagined I could ever do. It also allowed my confidence to increase hugely and go back to the outgoing, happy person I once was.
I guess what I am trying to say is throughout my secondary education I experienced both ends of the spectrum in regards to support. And i think it proves that with support and understanding a child with epilepsy can thrive and do equally as well. But if the support is not in place it is a much greater struggle. This why it is so important we make sure the education system have a successful support system to be provided towards children with epilepsy.
Young Epilepsy have set up a survey to ask about your experience of support to make sure children with epilepsy get the support then need. The link follows - https://www.surveymonkey.co.uk/r/EveryoneKnowsSomeone
In all my blog post I have always addressed the battles you have with epilepsy, making sure to point out the positives and focusing on them. However I have never directly talked about how it can positively change your life, as I have said previously I wouldn't change how I am. I am proud to be epileptic as its made me who I am today. Therefore I thought in aid of Purple day I shall talk about the incredible epilepsy warriors out there and the importance of the day to spread awareness so people can have a better understanding behind the condition.
Yes, it is hard to have epilepsy. And yes I have experienced many angry and sad emotions with it in the past. However this has made me who I am today. I think if you have epilepsy you have no choice but to be strong. Scary things are being thrown at you, medications seizures and so on. So I think without realising you just become a strong person.
Through meeting people online and in person who have epilepsy the main thing I have noticed also is the determination they hold. Just because we have a condition that can make everything a little bit more tricky doesn't mean we won’t do it. If anything it makes us want to more. A big example of this from my perspective would be learning to driving. And to someone reading this who isn't epileptic they may be slightly confused. When I was seventeen I started to learn to drive just like any other seventeen year old. But a few months after starting to learn I had a seizure. It wasn't just that my license had been taken off me. It was the anger and frustration that epilepsy was winning again, taking something away from me. So my doctor said after a year of being seizure free you can learn again. So through that year I saw all my friends passing their test, but in the back of my mind wishing I had that independence. But what did I do? I managed to fight back being a year seizure free so I was able to learn to drive again. This means more than just being able to drive, it proves to me that I am better and bigger than epilepsy. So if epilepsy is reducing you from doing something this doesn't have to be driving it could be anything you want to do please don't give up keep fighting as I did and it really pays off.
When you're diagnosed with a long term condition it makes you a lot more aware of what is happening in the world. Especially medically, you have an understanding of what other people are going through. Which makes you overall, a caring and understanding person. As you've experienced first hand what its like to go through difficult times.
Another huge one is people having there opinions on your condition. It is hard when people don't understand it or are mean about it. But I don't think it is really their fault as society has brought us up to this stigma of what epilepsy is which is so untrue. Which is why days like purple day are so important to raise awareness spread the word.
I guess what I am trying to say trough this scatty post is epilepsy has such a stigma and it needs to change. Which is why I think purple day is so important to raise awareness and spread the word about what the condition is really about. But also remember the people who have this and just take your time to listen and try and understand what they're going through.
Please take a look at Epilepsy Action and Young Epilepsy websites as they provide incredible, clear information to what epilepsy is and what to do if someone has a seizure. So please just take a moment to read up on the condition so we can fight this stigma and make people understand it.
As well as writing a blog to raise awareness I am also selling handmade cards to raise money for re-search into the condition please take a look at - http://www.everglowdreams.com
I have never actually explained why my blog is called 'One of those days'...When I was thinking of ideas on what to call the blog, I thought it fitted well as I find with epilepsy and mental health you have a lot of what I like to call 'one of those days', when everything just gets a bit too much to handle. And you need to take a step back breathe and relax.
But I will continue to take it as just 'one of those days' and tomorrow will be a lot better, keeping positive and making plans ahead. Therefore you have something positive to look forwards to and focus on. Anyway as I am rambling away this post is going to be about the Daily battles of epilepsy and mental health when you're having one of those days and how i find it affects me. And also people struggling to understand. Therefore I hope people can relate to this blog post. And people who know someone who has epilepsy or suffer from mental health can allow them to have a better understanding and insight into it.
Daily battles in the brain stopping you from doing things
As I have said previously I never know what to expect when I wake up in the morning. Epilepsy is an unpredictable, you never know when your next seizure is going to happen, medication side affects or just feeling down and on edge. Therefore plans are always tricky, as this therefore makes you feel crap about having to cancel the plans for feeling poorly. But this is the reality of living with epilepsy you can't push your body as I know then I'm increasing the risk of having a seizure. So I just have to pause, stop, breathe and relax. This on occasions can frustrate me hugely, but even when it does I find I have to be positive, its not going to change and I just have to focus on getting my body rested and better for the next day. I think that is my main advice, you have to listen to your body and you learn to over the years. Watch you favourite films, go on a gentle walk, have your best friend over to chill with you whatever makes you feel relax and better.
People struggling to understand -
My friends and family do a fantastic job of being understanding and being so patient. However I don't think you can truly understand how a person feels unless you have experienced it. Epilepsy is such a hard condition to understand, however you can try your best to explain it as well as possible. Explain how you're feeling, the way it makes you feel to your family and friends so they get a better perspective on why you feel the way you do. Sometimes..yes, it is hard as people don't understand but you have to accepted it and move on. And focus on the fact that you're not the only one they're are hundreds of thousands of people out there feeling exactly the same as you and these people are the strongest fighting a battle. So remember to keep positive, focus on what is fabulous in your life and remember its just 'one of those days'...
Like a flick of a switch my life had changed for ever, I went from a confident, energetic, healthy child who loved playing sport and was always on the go. To a poorly, confused, scared, exhausted and anxious child. It felt like this literally just happened over night. As the seizures just suddenly happened and like most people who are diagnosed there is no cause for the reason why you develop epilepsy...
So back to when I was a very poorly, scared eleven year old. The doctors told me I was epileptic but didn't give me much of a description of what this meant. Also my parents where uneducated on the topic so they where unsure on all the facts. I left the hospital equally confused but my parents kept reassuring me telling me it would be okay, I will get better and we would sort it out With medication and so on.
If we fast forward two years, at this point I am thirteen, I had gone from confused and scared. To being an angry, anxious, depressed mess. I was angry at epilepsy and world for running my life (at least thats what I thought back then)!. Hardly attending school as I was too ill to go. And although my medication was controlling my bigger seizures it wasn't controlling the smaller ones so was still having several seizures a day. This was no life for a thirteen year old!
At time I hit breaking point, I could either hide in my house all day or realise I'm I've got this condition for the rest of my life and I have got to be strong and battle against it. Although at this point I stilled hadn't accepted it, but had more of an understanding of what was happening.
Fast forward another two years, my doctor added another drug, ethosuximide. I was hesitate at first as I was scared of the side affects and how what it would do to my seizures. But after two months of horrible side affects (one of the oddest was hiccups for a whole two months). It started to control my seizures. I started to remember what it was like to lead a more normal life and although still incredible anxious back then. I learnt to slowly build myself back up. However still at the age of fifteen, 4 years after being diagnosed I still felt I hadn't accepted it was I was still so angry for what it had put me through.
However about a year and bit later I learnt I had changed but in a positive way. I saw epilepsy as something which has changed me for the better, I am strong, determined and appreciate ever single day that I am well. And I know whatever it throws at me in the future I am strong enough to battle through it. So when I started feeling like this I learnt that I had accepted it, yes it took time but I have come out the other side such a strong person, who will not let anything get in my way of stopping my dreams and goals.
I know how hard it is to accept that your life has changed for ever, wether you have the condition or your child may have be diagnosed. And yes this turns you world upside down. But believe me with patience and strength you can get through it and one day you will suddenly realise that you have accepted your condition and be proud of you are. And if your love one as recently been diagnosed please give them time, space and the love they deserve as they are confused over what is happening to them.
One vital thing is raising awareness about this awful condition as I want to prevent as many people as possible going through what I went through and many others have experienced. I feel that back when I was diagnosed if I knew more about the condition and was educated in it I would not of been as scared and confused. Which is why we need to raise awareness and money so please share this post to help those who are currently being diagnosed, have recently been or for future diagnosis so there battle ahead is more smooth.
You are fighting a battle every day of your life and just for that you are incredible strong!
If you have read my previous posts where i have spoken about medication, you'll know that I use. An alarm and 'normally' write down when I have taken my tablets. However this morning was a whole differnt story...In this post I shall be talking about remebering to take medicition, or in my case forgetting and the feeling of fear that you have forgotten to take it.
So my normal routine is wake up, check my phone, go to the bathroom to take my medication and then go have breakfest. However this morning - I woke up went to my bathroom, went to toilet. Then the next thing I remember is walking into the kitchen. My mind blanked out what happened inbetween going to the toilet and the kitchen. Which is when I would normally take my tablets. So I questioned did I even take it this morning as I dont remember? But I cant just go take a dose incase I did take it? But as we all know my memeory isnt great...
Therefore this lead me to go into panic, and fear. I have managed to successfully take my medicaiton for 10 years, always at the right time even when I have been away on party holidays and crazy events. So how did I manage to on a normal december day forget to take it. So frusted how my memeory just goes.
Next I called my doctor and he advised that I didnt take any medicaiton until my night dose but make sure I rest, eat and am watched all day. As due to the likelyhood of not having my morning dose I was much more likely to have a seizure. Which is terrifing as I have spent the last few years relaying on my medcaition to control my sezuires and let me lead a 'normal' day to day life. So today I felt like a day of stepping backwards but really I have learnt a huge lessons for me.
Buy a medication orgainser - Today I have ordered a medication orgainser, therefore I will always know if I have taken my tablets or not. Which is my main point in this post as today is such a scary day for me. I have spent the whole day in fear and frustration. As I feel like I have just been waiting for a sezuire to come. So I strongly advice a orgainser. Even with my alerts, when it comes to having bad memory problmes I have learnt that isnt reasuring or safe enough.
So fingers crossed I will be well for the rest of the day and counting down the hours until I can take my medication! And need that organiser to arrive ASAP!
I have to be honest this post is going to be a bit differnt to my previous posts. As it is not so much me giving advice, its more voicing an opionion and sharing my story of loosing someone close to you due to epilepsy. Therefore I hope this can help others to relate to. Who have or are going through a similur situation.
Three weeks ago yesturday I got the horrfic news that one of my very close family friends, had suddenly passed away due to epilepsy. He was only 27. When I first heard the news I sobbed and screamed with the pain and anger of how such a loving, caring and young guy could just be taken so suddenly.
It made me and still makes me so so angry that epilepsy can do this to someone and his family. Seeing what they're going through is heart breaking. I have never ever felt pain like it, you feel like your body is eating you up inside. A constant feeling of sickness and darkness . Sometimes this disappers but then suddently the feeling just hits you again.
Due to what has happened, it had made me realise how lucky I am to have my epeilpsy controlled at the moment. And that I and others really need to just apprciate every day and every breathe that we take. As life is so precious! However it also does scare me, as someone so close to you can just go so young, and suddenly from the same condition is terrifing. But it has made me so so much more determind to live my life, do everything and anything that I want to do. And made me aware of what is really important in life. So please please, apperciate what you have, your family, friends and your health because that is so valuable.
My self and his family are going to create fundrasing events and try are hardest to raise arwarness for this awful conditon. Therefore in future posts I will be disussing any events or sponsering that shall be happening.
WE NEED TO RAISE AWARNESS, RAISE MORE MONEY TO MAKE PEOPLE MORE AWARE AND GO INTO RE-SEARCH. SO THESE BEAUTIFUL PEOPLE, WHO DESERVE SUCH A LONG LIFE AHEAD OF THEM ISN'T SHORTENED.
In this post I will be discussing the daily battles of being epileptic. All the hidden aspects that people don't see. And also will be giving tips and methods on how I deal with it all.
I want to discuss two main points about medication. Firstly, like many other people who are epileptic my memory isn't the best...my main thing is actually remember that I have taken my medication. If I take my medication a couple of hours later than I should I can feel my body going tingly and starting to feel spaced out. Therefore it is vital I take it on time. Below are some tips for what I do to help this.
1. Make alerts on your phone to remind yourself to take your medication. For me it is very important I take it at the roughly the same time every day. So this is a key one.
2. Take note of when you have taken it - after I take my medication I write a tick on a piece of paper. So if a few hours later I start to panic that I haven't taken it, I can look back at the paper as reassurance and safety that I have taken it. Or in some cases if I haven't then it reminds me to.
Secondly, side affects. My last blog post was about discussing the matter, so I shall not talk about it in too much detail. However ever day I do, and as do many others taking anti-eplitic medication experience horrible side affects. My main one is fatigue, I get tried very easily. My advice for the tiredness is, planning and getting enough sleep. I make sure that in the week I have a rough plan, so I don't over do it and have enough time to rest. Yes, I have had to say no to a lot of things due to tiredness but in my case I would rather that then risk having a seizure. So stay strong and hold down that will power.
So I am not a morning person anyway but add epilepsy onto that, and it is not ideal. I wake up every morning feeling groggy, spaced out, grumpy and a lovely headache. But not just in a 'not a morning person' way. This is a whole new level, it takes me a good couple of hours to fully come round and this involves having to make sure my medication has kicked in, and that I have eaten. My advice for helping this and how I deal with it -
1. Take your medication as soon as you wake up.
2. I make sure I don't have anything planned in the first couple of hours of the morning, so I have time to come round.
3. If I haven't slept as well then consequently I will be a lot worse the next morning, so I can't stress enough - sleep is a big help!
4. Breakfast - low blood sugar levels can increase the chances of having a seizure. I have noticed in the pass when I don't eat my seizures can increase. so I always make sure I have a decent breakfast right after taking my medication.
5. Relax and have time - Stay calm, relaxed and just let your body naturally come round. Don't force anything as this isn't healthy.
Tiredness and not being too busy -
Due to getting so tired on a daily basis, I have to be carful how much I do. As if I do too much I am increasing the chance of myself having a seizure, as this is one of my biggest triggers. Therefore I have to plan and I have learnt to say 'no'. It sounds silly, but I am such a people pleaser, and don't like to upset people. But I have learnt if I want to be healthy and lead a balanced life. Then I have to say no to things, which could be seen as being selfish. But the most important thing is your health. And as I have said in the past your true friends and your family will understand and won't mind.
1. Say no, if you're getting to tired or not feeling up to an event. Don't go as you could be putting yourself at risk of having a seizure.
2. Plan - you can equally do as much as your friends, we just have to make sure that we plan a bit more.
3. Rest, make sure you give yourself enough time to sleep and rest. So your body feels refreshed.
4. Advice to family and friends to someone who is epileptic - please be understand, it isn't easy. We don't want to say no but sometimes we just have to. Otherwise we're putting out health at too much of a risk but this doesn't mean we love you any less.
Controlling my stress and anxiety -
My biggest trigger for seizures is stress and when I get too anxious. Considering I have anxiety...its not ideal! However I have learnt methods to deal with it which allows me to leave a 'normal' day to day life. I am the kind of person that gets stressed easily and puts a lot of pressure on myself, whether this is uni or a social situation. This also kicks off my anxiety and I started to panic and over think things. This not only is a horrible feeling to experience but can affect your daily life, therefore below are some tips on how I control it -
1. I always say to myself will this really matter in a year times - for example I have a presentation at university that I am getting super stressed about, but in a years time I would of forgotten about it. For me this is a method which really works as it has allowed me to put my life into perspective.
2. Breathe - As I have spoken about in past postings, breathing methods are so helpful if you're having a tough day, anxious moment or in a stressful situation.
3. Relax - Finding time to relax and zone out. I do this by walking, whether thats walking in a park, a field. Just somewhere I can get fresh air. To re-fresh my brain.
4. Again SLEEP! - I notice if I don't sleep well enough then the next day I will be even more anxious. And I know the struggle of trying to sleep when your anxious, or stressed. Its hard! But the methods I have used is my therapist as helped a lot, reading or writing before bed, not eating or drinking a couple hours before. Breathing to calm my body down.
I will do another post soon with more advice as I feel like I have so much more to talk about on this topic!
The main thing I find about starting new medication for epilepsy is the side effects, being completely honest they can be awful! However be patient and it will be worth all that pain and frustration. Trust me, I have gone through it. Came out the other side and looking back it was worth it. So here is my story. I hope it can help others going through the same situation. Or have someone you know going through it, to help support them.
At about eleven years old I was put on lamotrigine, started on a small dosage (one tablet) . As I have spoken in previous posts at this age I didn't understand what epilepsy was or what was happening to me. But I had doctors and my parents telling me to take it, saying it would help me. I remember the first time I took it, I was on holiday. I was pretty fortunate with not having too many side affects to it, apart from feeling lot of fatigue and nausea. Fortunately this past after a couple of weeks.
They started to control the long seizures but I was still ‘blanking out’ every day. Due to this my consultant decided to up the dosage to two tablets. Again this helped control the longer seizures, but I was still continuing to blank out.
This continued from the age of eleven to fifteen, my doctors had tried to persuade me to add new medication to it, but I was stubborn. I knew that the side affects of a new medication would cause me to have time out of school (this was during GCSE years).
Therefore I waited until the summer holidays. When I was fifteen, to start ethosuximide. I don't mean to scare readers if they're about to start this drug as it reacts differently with every body and it was totally worth going through all this, to get where I am. But my side effects for it where horrific for a good couple of months. I couldn't leave the house as I was too tired to move, I felt spaced out, dizzy, nausea, weak and had continuos hiccups. However the patience of dealing with these side affects was so worth it. Four years on, they have successfully controlled my blanking out. And I am pleased to say I have been seizure free for about four years now!
Ethosuximide, is literally my angel as I am now able to live as much or a normal life as possible. So I guess what I am trying to say is I know how horrible it is, trying different medications, changing doses and so on. However it is worth it, stay strong and it will pay off.
My advice for parents, friends or partners of someone who is epileptic and trying out different medications. Is please be patient, it is scary putting various medications into your body and not knowing what side affects you’re going to experience. Or how it is going to affect your seizures. If they're tired, or experience the horrible side effects, therefore they cant do much. Sit with them, comfort them and reassure them.
If you have a child who is going through this process, they may be confused (like I was). So try and explain as well as you can what is happen, give them leaflets on epilepsy, if you're struggling to communicate with them. Having my family and friends around me, supporting me during these times where vital and it all pays off in the end.
Be the strong warrior that you are, and stick at it! As the results could change your life for the better!
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