You are stronger than you think
Living with epilepsy it is unpredictable, you could wake up feeling fabulous or wake up feeling like a brick has hit your head. And of course you never know when a seizure is about to hit. For me personally the biggest difficultly is sleep, if I have a bad night sleep I then have to cancel what ever plans I had the next day, as I wake up feeling spaced out and at a high risk of having a seizure. Therefore all I can do is rest and get an early night. These next few paragraphs is how it affects my family and friends. And advice on how I think you can help the situation.
I have missed out on a lot, lost friends and even a boyfriend over my epilepsy. This is all due to not being able to attend social events, them not understanding or not going ahead with plans that have been made. But I know that my true friends will not care if I cancel last minute, as they understand. And they know that I will re-arrange to see them a day later or so.
I think how to deal with the friendship aspect of it, you just have to be strong and realise they're really not worth your time or sadness if they are not patient or understanding towards your condition. If you are epileptic or have anxiety you need people around you who understand, and are supportive to be with you through the difficult times but also be there when you're thriving.
Yes, I have lost friends over the years due to what comes with my condition. However I have the most amazing friends surrounding me, and I know I am so lucky to have them. They allow me to do the 'normal' things a girl my age would do, go out and go travelling with them - for example. This therefore allows me to forget about epilepsy, and live life to the full. This is due to how I have explained to them what epilepsy does and how it makes me feel, to give them a full understanding. Epilepsy truly, finds out who your real friends are which I think is a good thing, as a lot of people don't realise they're surrounded by fake people.
Family I could talk forever about ; I have seen my family go through the whole journey with me, since my diagnosis. I have seen the pain on their faces, the look and words my mother has given me in the past - with her saying "she wishes, and would do anything to take this all away from me".
Not only will it change your life being diagnosed with epilepsy it will change your families dynamic. Not in a bad way though, we have become closer, stronger and appreciated life so much more since being through the 'hard times'. The family life has adapted over the years. As they have to understand that plans may change last minute, the worry of when is the next seizure going to happen, when are we going to have to take her to hospital next. But once you have your come to terms with your epilepsy and control it, the family environment settles so much. You will develop such a strong environment for yourself and family to be in.
I know the feeling of hating what is happening to you, which forced me to push my family away from me. As much as they where trying to help me in any way possible. But I know if they hadn't of been there for me I wouldn't of got through what I did. And even to this day they are still so amazing and supportive if I am having a bad day, we talk and relax until I feel better. The advice I can give is let them understand as much as possible, talk to them about it. As I know its scary but they want to help and its so much less scary doing it all alone.
As i am typing this I am having a panic attack...
It starts with the feeling of my heart pounding out of my chest, racing so fast. I feel like I am going to have a Heart attack, but I know its anxiety taking over the control of my body. My pulse is racing I feel like I can sense the blood flowing at million miles per an hour round my body. Breathing gets heavy. Next the only way I can describe it is I feel like someone has put a plastic bag over my head and I am being suffocated. I try taking deep breathes to calm myself down, but I start getting super light headed and disorientated. After I feel mentally drained and just want to rest. God knows how I am going to get back on train later to go back to my flat in London.
In this state of mind you just feel this urge to run away, you are feeling like you’re going to faint, have a heart attack or die. The worst thing is at this stage of a panic attack you have no real control over it other than to calm yourself down, by sitting down with some water in a quiet place (this is personally what I find helps me).
One of the worst things for me is I haven't had a panic attack in a long time, which for me is a long time. So this sudden panic of me just lying in bed was such a shock. As I have said in the past my panic attacks where brought on by crowds and busy places. However I have learnt over time I put too much pressure on myself to make me people happy. And for me to succeed at university. Therefore I know that this panic attack was due to build up of worry and pressure for the coming week, as I feel I have to impress the teachers and be there for my group projects. People are probably thinking well why don't you just de-stress and stay calm, for someone with anxiety this is very difficult because you over think situations and worry about things way too much.
To someone reading this who doesn’t have anxiety or panic attacks you must think well don't be ridiculous, that sounds so silly. It is a mental condition (which makes me sound crazy ) but thats what they class it as. It takes over your life. I use to be at a point in my life, back when I was 14/15 where it controlled me so much that I couldn't leave the house. But I have built myself up through coping mechanisms, talking to a therapist (which I strongly recommend to someone who suffers with anxiety or panic attacks). I am not ashamed to say I have anxiety and panic attacks because to be honest anyone who has been through what I have medically been through, how can that not damage you long term…
Another important thing with me is my anxiety can increase the likely hood of me having a seizure, so I have to try and manage it as well as possible. Get wound up as in the past increased my seizures hugely. I don’t know if this is just me but I have found this is one of my seizure trigger which is why it is so important I control both as well as I can.
Next I am going to write some tips and advice on coping with panic attacks and anxiety :
Breathing - Dealing with panic attacks is hard, breathing is a huge aspect. When having anxiety attack you're breathing increases to such a fast rate, causing you to feel light head. This therefore in most cases makes you panic even more. I definitely have calmed my anxiety down and even stopped myself from having a panic attack by controlling my breathing, I was taught this through a therapist. I strongly advice you find some breathing methods that work for you, there are now fabulous apps out there that can teach you how to control you're breathing.
Distraction - With anxiety the more you think about it the more it's going to build up in your brain. So try and keep as busy as possible with this I don’t mean having to go out and go crazy. Could be as simple as going on a walk, reading a book or listening to music. This allows your brain to be distracted and stay calm.
Dont suffer in silence - I think its very important to talk to your family, friends or partner if you’re suffering from anxiety as this allows them to have a better understanding to how you’re feeling. If you don’t feel comfortable talking to your loved ones, then a therapist is I think an ideal person to talk to about how you’re feeling which then in my cause allows you to feel more comfortable talking about it which then leads you to be able to talk to others about it. I think it is so important to tell your family, friends or partner as when you're having a panic attack or feeling anxious they know what to do to help. A big thing for me was I missed out on a lot of social events due to anxiety, therefore I would feel bad about how I let me friends down. So explaining to them about how I feel about why I couldn't come made me feel better about the situation so I felt I hadn't let them down.
Don’t give up- I know the feeling of the battle in your mind, the anxiety taking over your body, stopping you from doing things. With the anxiety telling you, that you can’t do it. But then you want to go out or do whatever the anxiety is stopping you from doing. Stay calm , ground yourself. It does get better. Build yourself up, talk to people, and I know its hard but say yes. This can be baby steps, I think building yourself up slowly is the best way to improve it.
Fresh air and walking - I find that one of the biggest method that can calm me down, is a walk. Just spending time in the fresh air, sitting on a hill with my dog, helps me hugely. So if you can find a park, a field near you I think it is perfect area to escape to.
To some of you this blog post may sound silly or like 'crazy dog woman' but honestly I can not empathise enough the amount a dog can help you. Therefore I would like to share my story of how my dog 'Bronte' changed my life.
We got Bronte in 2010, when I had just turned 13 years old, this was about a year after I had been diagnosed. This was probably one of the hardest times of my life as I was having several seizures a day, therefore missing a lot of school and seeing friends. At this age my seizures caused me to feel too scared to leave the house alone, as I was worried I would have a seizure in public. So my parents thought it would be a good idea to get a dog, which was left to my responsibility to walk, to encourage me to get out the house alone and for company.
How she helped me - because I knew that Bronte needed to be walked daily she was my reason for being brave and getting out the house alone. Even if I did have seizure on a walk I would feel safe as I had Bronte by my side. To other people this may sound silly, but for me Bronte was my stepping stone to getting out alone, seeing friends, going back to school. She started to bring my confidence back.
When I was 14/15 I had to be home schooled due to being too ill with epilepsy, stopping me from attending school. This therefore meant my social life went hugely down hill compared to other children my age, leaving me feeling very alone. However Bronte would always be there, if I was getting fed up with home tutoring I would take Bronte on a walk or give her a hug. She made me feel as if I wasn't alone anymore even in my darkest times.
My advice to people who are going through a hard time with epilepsy or struggling with another condition is I know a dog is a huge commitment. But if you do have the time, money and other requirements for having a dog, I would strongly recommend it. As I know that Bronte changed my life for the better, she helped me grow and develop. Although she isn't a seizure alert dog, I always felt safer when she was by my side. I always know that If I am having a bad day or week, she will always be there and won't leave my side until I feel better. I honestly believe that I would not be where I am today If my family and I hadn't of got Bronte.
The bond that I have with Bronte and what other people can create with their dogs is indescribable. When you're at you lowest they give you the strength, a friend and you feel loved. Dogs are not just an animal they are family, as friend who can change your life and make you feel like you're not alone.
In this post I am going to talk about my experience of peer pressure in a social environment, throughout university and school. And my tips and advice on how I have managed it, with epilepsy and anxiety. There are various topics i would like to cover in this, but most vitally alcohol.
The first time I remember feeling socially pressured was when I was at a sixteenth party. I just remember this feeling of being smothered and surrounded by so many people, a lot of drunk people. Then they offered me alcohol, I would say ’no’ then you would get the ‘why not!?, you’re being boring?’ blah blah. At the age of sixteen I took this to heart, I didn't like that I couldn't do the same as my friends, I just wanted to experience a normal teenage…life so to speak.
I think the time that it hit me that it really doesn't matter what people think or if you’re drinking was when I had my sixth form leavers ball. I did have the most amazing evening ever, it was so much fun and I wouldn’t change a single second of it. We had the ball in our school grounds, this went on until 1:00 in the morning (as soon as I saw that I was like ahhh when am i going to take my medication) but there is always a way round it! After this the party continued at a my friends house, this when on until 6:00am but I went to bed at about 4:30ish. That night I was drinking wine all evening, I was probably the most drunk I had ever been.
Waking up next morning at my friends house feeling so so ill and scared, I felt so out of it, confused. I felt like my medication was rushing around my body and brain fighting with my medication to stop me from having a seizure, it was honestly a sensation of such fear. I rested and did nothing all day so I gradually started to feel better. However even though I felt better by then end of the day I decided I didn't want to feel like that anymore. I knew that if I had of drunk and gone to bed that late I would of wouldn’t of felt that ill the next day.
After this experience of the summer ball I headed to uni being like I am not going drink. And university as we all know as this massive stigma of drinking games, getting so drunk you couldn’t even remember the night. So I didn't drink at all for my whole first year at university, didn't care what people thought. And I actually found that people didn't care. They didn't care that i wasn't drinking as I was still attending events and having a good time. I think we are brought up in an environment, where we are expected to drink, however thats really not the case. I learnt people really don't care. And if you do get someone come up to you and say why aren't you drinking? you don't have to give them the whole explanation if you don't want, its none of there business.
So my tips for being at university and dealing with the peer pressure of drinking and partying -
1. If you don't want to drink, don't its your choice. Putting your health at risk just to please people, for just someone who you hardly know is not worth it.
2. Plan if you are going to drink, know your limits with you medication.
3. If you do choose to drink make sure you have the next day to rest and recover.
4. I have learnt to just ignore people who make ‘horrible’ comments, they're not worth it.
5. I have had to miss a lot of nights out and parties due to being too ill, too tired or my anxiety as been playing up. Just please don’t be too hard on yourself. Your true friends will be understand and respect the fact that you need rest and its too much. Going out five times a week at uni was not going to happen for me. My health comes first, so my friends just had to deal with that or leave.
6. Medication - make sure you take your medication on time and think if you're out are you going to take it before or when you’re out.
7. Make sure the friends you are with on a night out are aware you’re epileptic.
8. Have fun! honestly its your choice if you want to drink or not, I personally don't as I have learnt through experience that its not worth and I still have an amazing night without alcohol.
This is my experience of my first year at university, by all means other people may feel different towards starting university who are epileptic. However I hope this posts either allows people to relate or for people who know someone who's epileptic , at university to have better understanding behind how the person feels.
University is a scary place (to start off with) for anyone. As I have mentioned in the past my seizures are set off by sleep deprivation, changing your sleeping pattern and stress. Well I thought to myself uni is gonna be fun with this in consideration! But I was determined to control my epilepsy yet still have an equally good time as everyone else. Over the year I learnt how to adapt my lifestyle so I was able to have a good, and a 'normal' university experience yet still keeping my health on track.
Below are some of my tips on how I managed to do this -
1. Planning, think do I have a full day of university the next day, as I knew if I did I couldn't go out the night prior. Therefore I could go out the night after because at uni every night there is something going on, whether thats a flat party or a night out! So if you miss a night out don't worry, they'll be plenty more!
2. The next day after I'd been out I would make sure I would rest all day. As I knew if I did anything this would make my health worse. Also that night get a good night sleep. I learnt this from a very awakening experience I went to a flat party in my halls and didn't go to sleep until 5:00 in the morning and the next day had lunch and shopping with my family, fortunately I didn't have a seizure but I felt so dazed and ill. Lets just say you learn from your mistakes!
3. I don't drink when I go out, I could drink a small amount however over years i have learnt I really don't need to drink to have a good time. Its not worth it for how i feel the next day. Later I will be writing a blog post about drinking and peer pressure.
4. Balancing, making sure you get enough sleep, socialise, attend uni and do your uni work! I know it seems like a lot but it is possible! Over the year you just learn to adapt you lifestyle, and doing this means you'll have the best year of your life and equally as an amazing time as any other person at uni.
5. Telling your flat mates and friends, I wanted to tell my flat mates and friends I made in my halls pretty early on. So firstly if I where to have a seizure they'd know what to do. Secondly I wanted them to understand that I am not going out every night because due to being anti-social its because of my health. If they're decent people they'll be understanding and respect this.
6. Nights out ; I am university in london so the london clubs are normally open all night until 7:00 in the morning... i can't do that to my body. So i would make sure I would go for the night out but come home earlier than everyone else, i know this sounds like 'aw, but you're missing out'. I honestly didn't feel like I was as I was still out for most of the night.
Being frankly honest it is harder being epileptic and at university compared to other people however it is possible, and my first year was such an amazing year. Now going onto my second year I have realised I want to concentrate way more on studying...boring I know! But its your time at university so don't care what other people think of you, do what you want!
I hope this post has helped someone in the same position as me or someone who knows someone who is epileptic and at university to give you a better understanding.
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.
Hi welcome, to my blog! Come follow my journey and read my experiences of living with epilepsy.