I have a page on Instagram where I share my travels to show that you can still travel while having epilepsy (or at least follow your dreams), but decided to set up this blog to post the rest of my epilepsy life. I hope you enjoy reading these blogs
I’m did my sponsored walk with my sister and would like to tell you a bit about why I’m did it;
I was 10 years old when I had my first seizure and in a music lesson playing the recorder. I think I recall learning how to play Three Blind Mice. When I was young this recorder lesson was one of my favourite lessons at school.
My sight drifted off, but I remember seeing a vivid shot of my teacher. Then, it was like a frame had been cut from the film.
I was rushed to hospital and given an EEG. I don’t really remember much about it because I didn’t really know what was going on and was finding it confusing and was told I had epilepsy. I had never even heard of epilepsy before. The doctor explained it to me. He said I had a seizure and explained to me what a seizure was and confirmed it was epilepsy.
The next day my friends and teacher came to me and asked what happened. I told them I was diagnosed with epilepsy. It was all a strange vibe with me at first but I was living with it, so got used to it after a while.
My first seizure was in my last year of primary school, so my epilepsy didn’t affect me badly till I went up to secondary school. I tried to go on a couple of ski trips in 1995 and 1997 but was declined both times because I had epilepsy which was really heartbreaking for me.
Over time I have ventured abroad and not let my epilepsy get in the way of doing things. In 2015 I went to America all by myself and got a lot of praise for doing so and I’ve even been to Africa and Sky dived. I finally managed to ski in Andorra and Austria too. I have proved that my epilepsy has not stopped me doing other things.
“Purple Day” is a day where people spread epilepsy awareness and dress in Purple, so every year now I try to dress up in Purple on Purple Day and donate money to a charity. I give money to Epilepsy Action because it is my favourite epilepsy charity in the UK.
It’s not just the person with epilepsy that things can be hard, it can be daunting for friends and family too. It can be stressful of knowing what to do, reacting quickly, and helping the person. It can be quite frightening too if it’s the first time and they’ve never seen a seizure and don’t know what to do.
I asked my friend Chris Dublin his experiences of my seizures and here is what he said;
“There were two occasions where i saw him have a seizure. The first time was at our work place and we both worked on the same department. We were both by the tills when i saw him drop to the floor and started to shake. I automatically knew that he was having a seizure. It was very scary to watch and i didnt know what to do at first because I had never seen a seizure and I froze. When I evently came to I rushed to get a first aider who knew exactly what to do we took him into the office then the ambulance came and took him to the hospital.
The second time we were at a friends house and we were staying the night. Our friend and his girlfriend had gone up to bed. I heard my friend making noises and shaking. I knew what to do because I had experienced it before. I just moved stuff out of his way so that he didnt hurt himself and I just communicated with him by talking to him. Eventually he stopped having the seizure and I got him a glass of water. Then we went to sleep.”
So by my friend’s accounts, he was scared at first, but at least the second time he was more used to it because he had seen one before. He has been able to know how to deal with my seizures if we go out.
A good thing to know if you know someone with epilepsy is seizure first aid (image credited to Seize Your Adventure Podcast)
If you know someone with epilepsy, asked them questions about how you need to handle a seizure if they have one. One way is keep talking to them and then you know when they are feeling better.
Every year it is “Purple Day” on 26th March. It is a day where people with epilepsy (or know someone with epilepsy) bring epilepsy awareness and usually wear something purple. This year, to celebrate this day, I decided to do a 7 mile walk from house to a park and raise money for a charity called Epilepsy Action.
The day started off well. I put on my purple hoodie and hat then filmed the start of my walk for all of my supporters. I started walking and listened to some music at the same time.
At a certain point I did have to check my google maps though. Oh dear, I’ve gone the wrong way! Just meant I had use Google Maps to get me back on track. I was able then able to make the rest of the way there.
The park had a lake, so I watched the ducks swim. The only problem is by the time I got to the park it started raining. I was wanting to do a live stream but my hands were too cold
I walked round the park then came out again. On the way home I decided to take a different turning and make my walk longer (all the more exercise). It was was an easier route that I was used to.
In 2013 I started travelling with my friend Terence from work. I had told him I had a bit of money saved up so he recommended I do a bit of travelling (he had been to quite a few countries himself). I had travelled in 2007, 2008, and 2010 but that was with my uncle.
We went to Ibiza and Australia. This made me feel at ease. There was one time where we went to Norway and I had a Tonic – Clonic seizure while I was sleeping. All I remember from it is waking up with a massive headache. He was sleeping in the next room and he had told me he heard me moaning (a little thing I do while I have my seizure) and he rushed to see what was happening. This was the first time he had seen me have a tonic – clonic but luckily it only lasted about 5 minutes, so he didn’t call any emergency services and I was just able to come out of it.
Then, in 2015 I decided I wanted to go to America because it had been a lifetime dream. The idea of being in “the big Apple” and seeing the Statue of Liberty really intrigued me.
We started making a few plans. We talked about all the places we wanted to go to. But one day he came up to me and said he wasn’t able to go. It was a bit of a bombshell and I was ready to have my dream destroyed.
But then, my friend suggested I go by myself. I had never thought about going alone, so the idea shocked me
It took a bit of thinking, I felt it wasn’t going to be easy to do it alone. I had been to Paris and Rome by myself but never another continent by myself before, so it felt like it was far away. But it was my dream to go to America, so I was up for the challenge.
I organized all the flights, accommodations, and activities separately and when doing so I started to feel excited. The activities were mostly tours, so when it came to doing them I had to tell the tour leader I had epilepsy. They were tours that I believed I could do taking into account my epilepsy.
Booking everything by myself made nervous though and in the days leading up to my departure, I wondered “will I be able to do this?”.
When the big day came, I was carrying my luggage, and a bag of mixed emotions, through check-in and security. Knowing that it was just me on this journey, without my friend, made me nervous. But I was able to get through the standard procedures because I had travelled before and once I was on the plane I was able to relax and fall asleep.
When I arrived in New York I took a taxi to my hotel. It was the evening, so wasn’t able to see much of the city, but was feeling excited.
By the time I arrived at the hotel, it was past 10 o’clock in the evening, and as soon as I checked in to my room, the jet-lag kicked in, so I had a bit more sleep.
The next morning, after breakfast, I left the hotel and looked up at the skyscrapers. To see them in daylight made me get a proper view of the city
“I’ve done it!”, I thought to myself. “I’ve made it to America!”.
My lifetime dream had come true.
I had booked a tour of the Statue of Liberty for the first day because that was the thing I most wanted to see in New York. I went via the subway to the port because I heard this was the best way to get there and got on a ferry to Liberty Island. The weather was a nice sunny cool breeze. Being on this day tour helped me get over the nerves of being alone because I was around other people
As the island came closer and closer I was finding it more and more amazing. I just couldn’t believe I was seeing it for my very eyes. It was definitely bigger than I expected it to be. Then when I got there and got off the ferry it took my breath away. To be right in front of the Statue of Liberty was just stunning.
Over the 4 days I was in New York I also went to places like Times Square, Empire State Building and Ground Zero where the Twin Towers used to be. I wished my friend had been with me on this journey, but it was also exciting doing it all by myself as I had never done something like this before.
After New York, I went onto San Francisco to see the Alcatraz prison and the Golden Gate Bridge (another landscape I had always thought about visiting), Las Vegas to see The Grand Canyon, and then Miami to have a couple of days on the beach. It was like a little tour of America from the East Coast to the West and back.
Along the way I would talk to people in bars and restaurants to find out what the culture was like. On one night in New York I went to a bar and baseball was being shown on the tv. This was something I didn’t have much knowledge about, so I asked someone in the bar about how the tournament works. I also found some cities could be more upbeat than others.
When I got back home to London, I found out that the friend who hadn’t come with me had been talking about me. He had told everyone he knew what I had done, travelling across America with epilepsy. (Maybe because he was impressed).
When he said that to me it made me feel proud of myself. I felt like I had accomplished something, and felt more confident in travelling.
When I travel I always have my medication in their original boxes and a pharmacy bag so the airport knows it’s medication. I try to take my medication at my destination time so my body can re – aline itself (including taking it on the plane). I let people know when I will be back from trips. I also usually have a travel buddy and he always checks up I have taken my medication.
This is a blog I’ve been meaning to touch on for a while but haven’t been able to get round to it.
A guy called Daniel Bedeau (Instagram @dan_runs_epilepsy2019) did an interview on ITV/Sky News saying he has epilepsy but he is still employed. He tried to become a professional British footballer but when he was diagnosed with epilepsy he got turned down. Luckily he is now a coach at Watford FC, so he was still able to get a job in Football.
In the UK about 36% of people who suffer from epilepsy are still still employed. I happen to be lucky to be one of them. I think a lot of people are worried that their epilepsy will go against them. I’m here to tell you now (if you not in employment) that you have nothing to worry about. Here in the UK (and I’m sure it must be similar for other countries) we have a law that goes against discrimination of disabilities. As long as you can do the job and your epilepsy does not interfere then there should be no reason why they shouldn’t employ you.
Sure, I was worried when I had my interview for my job I have now. I work at a warehouse so I said to the person interviewing me “I have epilepsy so I won’t be able to drive a forklift truck”. They said it was perfectly fine and they didn’t need everyone to have a driving licence.
Truth be told I still get worried at work. I’ve recently had a few seizures more recently and it makes me wonder how my managers are feeling about it (my doctor has been weaning me off one of my meds, so hasn’t really helped). Always thanking my managers for being so patient with it all though.
So in conclusion;
– yes, you can get a job even though you have epilepsy
– let your employers know about your epilepsy and how they can accommodate you
– If you are struggling, let your managers know and maybe they find an easier/less stressful job
A while ago I was going about my normal duties at work when I started getting an aura (which consists of dizziness and a headache merged together for me). This then turned into a seizure, but I was still conscious. It wasn’t a Tonic – Clonic which I usually have but the aura had got worse. It was like something was bouncing around in my head and I really wanted to sit down. It was even making me scream a bit like I’d just woken up from a nightmare. I went to my supervisors and was able to sit down for a bit. I had a bit of rest and when I recovered I carried on working. It was near the end of shift anyways.
When I went home I glad it was all over and I could have a rest and just look forward to the new day.
Next day I started the day a fresh with all the usual routines ie. having a wash, having breakfast, going to work etc. At one point of day all of a sudden another seizure happened. This was a bit irregular for me to have a seizure the day after I had another one, but still rested
Day after that, BOOM! Another seizure! To have 2 seizures in row was weird enough but 3 days in row??
Every day I was saying to myself “I’ll be ok today”, but the days kept mounting up. In the end it mounted up to 10 days in a row! I was seeing my neurologist and told her what happened. It was in a stage of her changing one of my 3 medications I was on. I was expecting her to change the meds back but she upped another of my meds.
After the increase things got better. In this 10 days of seizures I was always watching the clock saying “come on, I need to get through this day without a seizure!”, then one day I made it 24 hours without a seizure (yay!). I was so happy I took to social media to post about it. Looks as though I jinxed it though because a couple of hours later while I was sleeping I had a seizure again (boo!). A big disappointment because I thought I had broken this chain.
Over the next days it got better though. Had a couple of 24 hour gaps, then finally my first 48 hours seizure free in ages! This then even turned 72 hours and then finally, the chain had been broken.
Perhaps it was the meds, but I’d like to think it was a lavender candle that helped me. My seizures are usually triggered by stress, so in the torrid days I was looking for a stress relief method. I had heard there was a black Friday event on the web and was able to get a discount on the candle. Lavender is a remedy that can help you feel relaxed. I lit the candle each night and ever since then I have felt better. This happened near the end of the year, so I was beginning to think I was going to have a seizure on Christmas Day, but luckily I had a nice seizure free Christmas.
Been having a few seizures lately and it’s made wonder what’s it’s like to be in a life without epilepsy. I’ve had some seizures at work and my managers are always helping me, so really do they ask a similar question; “what is it like to have epilepsy?”
For anyone reading this who doesn’t have epilepsy my seizures consists of a combination of dizziness and a headache. It can last 5 – 10 minutes and is not the nicest feeling in the world. It can be caused by things like stress, not taking medication, or flashing lights (but that depends on a person being photo sensitive epileptic).
Epilepsy isn’t just about the seizures though, it’s taking medication every day, making sure it’s on time, hospital appointments, not being able to drive (though luckily in the city I live in I can travel on public transport for free), and a few other things.
I find sometimes I have a bit of a bad memory as well, like forgetting names, or what I did a week ago, or what things are. Essentially things that are basic.
I live in the UK, so I am 1 in 100 that have epilepsy. A lot of the time people say they’ve never known someone with epilepsy (though I’ve met 5 other people in the UK).
This is a blog that was going to be about something else, yet I turned into this (lol), so hopefully this will give people an idea about the world I live in
So last week at my work I had a bit of a seizure. My supervisor let me take a break but I eventually asked to go home because I believed there wasn’t any way I could carry on working that day.
My job consists of various tasks. One task I do (or did rather) makes me have seizures because it is a bit stressful, so my managers said a while back I could stop doing it.
Recently though I was told do it though and that’s when the seizure happened. I had been asked to do it a few time before aswell. I had been ok other times but it was confusing that my managers said I didn’t have to do it then they were making me do it again. The day after the seizure I was told I had to do the same duty but I told them that due to what happened the day before I wasn’t really up to doing it again. They let me do a different duty and I then asked them why I was even being made to do it seeing as they said a while back I didn’t have to do it. I then had a sit down talk with my manager and said I would prefer to do it only when they need me to do because there were other people who could have been doing instead of me and they agreed to it.
Moral of the story is that you can work while having epilepsy and jobs shouldn’t turn you down because of your disability. If there is a job you can’t do negotiate with managers about what you can or can’t do
I put out someone’s profile today because they were newly diagnosed and thought they needed all the support they could get; which did the trick (shows how one post can make all the difference). It then made me wonder; when I was diagnosed with epilepsy in 1993 we didn’t have any of this social media.
There wasn’t anything that you could have in the palm of your hand and have what can turn into friendships when you have your bad days. Sure; we had our national epilepsy foundations where you could call up someone for advice, but you were just talking to a stranger. Once you put the phone down they were gone. I can’t say I ever used these helplines really though. The best help I got was from a specialist and from my family.
Social media was invented in 2004 but only really started to get big after 2010. I only created my account to show other people with epilepsy that there was light at the end of the tunnel. I had no idea that there was a big support network on there. So if you are newly diagnosed (or even if you are not) I would recommend you take to social media because there are lots of people in the epilepsy community you can chat to (including me, I’m always up for a chat 😉).
I had a seizure at work the other day so was feeling a bit depressed. I had a day off so I found a support group was going on that day. It’s great to have a support network on social media, but I think nothing beats talking to other people in real life, face – to – face. I went to this support group and there were about 5 of them. They seemed to be chatting to each other like they knew each other well, meet up together often.
I had talk with them together about stuff in general, then I decided to talk to this one guy, asking him how long he had epilepsy. He said he didn’t have epilepsy, he was at the support group with his wife who had epilepsy. I apologised but them asked him how life was like for him. He talked about how his wife has been to the hospital many times and all she gets is a prescription and send her home like they are trying to get rid of her and other things where they are just not solving the problem, so he was getting really fed up about it and not finding it easy.
It’s similar with me really. When I have a seizure my Mum is always worried about me. My sister had just come home from her own family holiday and my Mum had told her I had a seizure and my sister still asked me how I was feeling.
So that it just proof that if someone has epilepsy it’s not just affecting the person, it’s affecting family too.
Epilepsy Traveller 