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@epilepsyaction   Epilepsy Action is the UK’s leading member-led epilepsy charity, providing advice and information for the 600,000 people living with epilepsy in UK

2 weeks ago

#Repost We love this perspective from @climbingclare 💜 ( @get_repost ) ・・・ I’ve been thinking about this a lot recently, and trying to make an analogy fit for me. Then as I got hit by a juggling knife it dawned on me.. Having epilepsy for me feels like juggling knives. At first it’s impossible to deal with and live with, you feel like you get one part of your life going (or one knife) then bang you drop it and your life gets put on hold. Then once you get up dust yourself off again you have to think long and hard about how to even start going again, and it goes wrong again. As time passes and you go through these motions, practices, frustrations and pain you begin to understand the intricacies of the condition or the knives, what works what doesn’t. Life begins to go again. You have everything in a very careful motion of throwing and catching and constant concentration. But every day and every throw you live with the fear that you could drop one knife at any time and you have to start all over again. Right now I’m re-learning how to live again, and getting the knives in motion. . . . . #epilepsy #tuesdaymotivation #juggling #chronicillness #thoughts #motion #seizurefree #seizeyouradventure #livingwithepilepsy #learning #motivation #celebration #jugglingknives

625
2 weeks ago

"I had my first seizure when I was around 8, I remember my mum telling me years later that they told my parents that I would grow out of it, as it was just a behaviour and attention seeking issue! Then a few years later it was epilepsy and I would grow out of that at puberty, but I didn’t it got worse. I didn’t receive the best treatment for my diagnosis until I was 16 when I was passed from a paediatrician to a neurologist. Who switched my medication from Epilim to Topamax - I’m still on it today, I’ve been on a few drugs in between, but this one is the only one that works. I was so lucky to have been referred to that doctor as he was a specialist in Epilepsy. He also got me in contact with an Epilepsy Nurse, who I saw once a year to talk about health issues that coincide with epilepsy. I was fortunate to have the same lady 10 years on when I had my bubba, who I saw regularly through out my pregnancy. I found school ok, hardest bit was in my GCSE’s as stress is a trigger and I had a few seizures. Having time off affected me and my grades. When I went to college, I drank and had late nights and my seizures increased. I just wanted to enjoy the same lifestyle as my friends, but my health suffered. I realised years later that I had to make sure I got 8hrs sleep each night and cut out alcohol as they trigger my seizures. After to this my seizures slowly went down year by year and by the time I had my son at 28 I was seizure free for 2 years. I’ve now been seizure free for 5 1/2 years and I’ve been driving for 3 1/2 years. I’d never given up on driving, I knew I would get there no matter how old I would be. It was one of my best achievements. It made getting up after all the pain, all the bruises and broken bones worth while. I’ve grown to accept my epilepsy as part of me. It’s never going away, I was born with it, it just didn’t want to say hello until I was 8, and now it’s in a long controlled sleep." #epilepsy #epilepsyawareness #seizures #seizuressuck #epilepsywarrior #tonicclonic #epilepsysupport #seizurefree

2328
1 month ago

“It’s thought I developed my #epilepsy as early as 7 but it wasn’t diagnosed until I was 12. I have a tonic clonic seizure every week and these can last up to two and half minutes. My myoclonic seizures can happen twice a week and last well over an hour. I can also have up to 40 absences a week as well as nightly auras. My epilepsy has always been uncontrolled, I currently take Zonegran, Trileptal, Clobazam and Acetazolomide. Triggers for my seizures include lack of sleep, getting up too quickly in the morning, stress, heat, too much TV - although I have spontaneous seizures too. My seizures are pretty violent and have led to multiple injuries. In the last 2 years I’ve broken my spine 3 separate times in 7 places. I’ve been put into various dangerous situations and had many accidents; crashing through a mirror, having the blades sticking out of my back, getting stuck behind the toilet door and battering my head. I’ve had a seizure in a taxi and got the seatbelt wrapped around my neck. Epilepsy has also toyed with my mental health. My experience with epilepsy and the NHS hasn’t been great, especially during the early years. I wasn’t treated very well and although my neurologist is better now, getting an appointment on time is almost impossible. I’ve still managed to get highers and a diploma in business, but I’d be lying if I said epilepsy hadn’t limited my life. Job opportunities are restricted and I can’t drive. The medications have contributed to the thinning of my bones, so I now have osteoporosis in my spine and osteopenia in my hip - not ideal when you have seizures. My daughter Leighanna (12) has never shied away from my epilepsy or the complications it has brought - she is extremely supportive, resilient and positive. She has a wealth of knowledge for such a young girl. My wife is my rock, she cares for me, supporting me during every seizure. She remembers every detail, especially my medication and doctor’s appointments. She is the person I rely on the most and the strongest person I know. I am eternally grateful to them both for their love and support. They have managed to make me feel almost normal and like I can lead a normal life.”

26625
1 month ago

"I was diagnosed with photosensitive epilepsy when I was 14, which really got me down for some time. I hated having seizures as they always made me feel awful afterwards, and each time I had one it felt like a giant step backwards. Before my medication properly controlled my epilepsy, I couldn’t do all the things my friends were doing as I was so afraid of waking up feeling groggy and not knowing where I was. Even though I was having less seizures, this ‘fear of missing out’ greatly increased during Sixth Form where my friends were starting to stay up drinking or go out to clubs. For a long time, I felt like I was never going to be a normal person. I felt so restricted by something that was out of my hands. I thought university would be incredibly difficult for me. There is so much focus on ‘going out’ and ‘getting drunk.’ I was scared I wouldn’t make any friends. Luckily, I met some amazing people who didn’t mind working around me. Even still, I just wanted to go out with them and decided to see if I could get my uni to implement any times where I would be able to go out, for it seemed that every club night was littered with strobes which would trigger my photosensitive epilepsy. The Student Union at Royal Holloway University of London has a feature where students can submit ideas about changes that they would like to make. The upvotes I received were incredible and after a surprising amount of negotiations I finally managed to get the Student Union to give me some strobe-free club nights this term. It took a long time for me to get somewhere, but I’m so glad that I’ve been able to do it. I’ve been getting so many lovely comments from people telling me that they are thankful that they can now bring their photosensitive friends out with them and alumni who wish it had been implemented when they were studying here. If there is one thing I want people to take from my story it is that you should NEVER let a disability hold you back and you should NEVER give up in what you believe in." Thank you @ana_patterson for sharing your story and doing something great for people with photosensitive epilepsy 💜 #epilepsy #epilepsyawareness #student #photosensitive

33216
1 month ago

Do you have questions about your epilepsy? Need help with benefits? What about driving? Whatever issues about epilepsy you might want to talk about, the Epilepsy Action Helpline is here for you. We're now open 8.30am-8.00pm Monday - Thursday, 8.30am-4.30pm Friday and 10.00am-4.00pm on Saturday. Call us free on 0808 800 5050, email helpline @epilepsy.org.uk or message us on social media 💜 #epilepsy #epilepsyawareness #epilepsysupport #seizures #seizuressuck #epilepsysucks #epilepsyaction #epileptic #benefits #driving

520
1 month ago

Steph & Dom: Can Cannabis Save Our Son? features former stars of Channel 4’s show Gogglebox, Steph and Dom Parker and their son Max. Max has severe epilepsy and autism and nothing has been able to control his seizures.The programme will tell the family’s story and follow them as they travel around the UK and the US to find out more about cannabis-based medicines. We will be opening our helpline between 9pm-11pm on Monday night. If you have any questions about epilepsy and cannabis-based medicines, please get in touch on freephone 0808 800 5050, email helpline @epilepsy.org.uk or message us on social media. The programme airs Monday 28 January at 9pm, Channel 4 or catch up on All 4. #epilepsy #epilepsyawareness #medicalcannabis #channel4 #gogglebox

15712
2 months ago

Show the world you care about support for people with epilepsy with your 2019 Purple Day wristband! Wear your wristband with pride, knowing you’re helping more children and families live better with epilepsy 💜 Get yours - epilepsy.org.uk/wristband #epilepsyawareness #epilepsy #epilepsysupport

22516
2 months ago

"I was diagnosed with epilepsy when I was 4 years old. However when I was a baby there was several incidents where my mum and dad suspected I had epilepsy. When I was first diagnosed I could have up to 8 and 10 complex partial seizures a day. I found my time at school really challenging due to epilepsy which lead to me missing out on important classes leading up to exams and stress being one of the triggers for my seizures I found this really hard to cope with which was a really difficult time for me. Now most of my seizures are unpredictable and happen during the night and can have from 4 to 20 a day. I try to live a normal life as possible such as going to concerts, going drinking and clubbing with my friends but not being able to drive is one thing I’ve found really difficult and seeing all my friends pass their driving test has been really hard to watch. I hope one day this is something I’ll be able to achieve. When I was younger my mum and dad said I coped really well but now, 19 years old as an adult I find it more difficult because you tend to focus on the negatives rather than the positives. As an Adult you know that there’s a possibility you might never be seizure free and they might never be under control. Epilepsy can be a very lonely place. You can be surrounded by loved ones who love and care for you but you yourself know they will just never understand what it’s really like to live with this illness that follows you around every day. I’m in the process of getting tests to see if I’d be eligible for brain surgery, but if not with my friends & families support I’ll be able to accept that epilepsy is something that I may have to live with for the rest of my life. I’m not going to lie I still have bad days, but who doesn’t? It’s not been an easy journey but I believe it’s made me the person I am today. I guess what I’m trying to say is, don’t let epilepsy define who you are." Thank you Sophie for sharing your story with us 💜 #epilepsy #epilepsyawareness #epilepsywarrior #seizures #seizuressuck #seizureawareness #mentalhealth #epilepsystory

2588
2 months ago

Steph attended our Trearddur Bay coffee and chat group and it changed her life. Find a local Epilepsy Action group near you this January - epilepsy.org.uk/january ... "I’m the mother of a little boy aged 2 who has had epilepsy since he was 10 months old. I hadn’t been able to talk about my son’s epilepsy with anyone other than my husband, or at least when I did they didn’t understand or I got too emotional to speak. No one really knows what you are going through unless they’ve been through it. A friend of a friend told me about the group after it had started up. When I arrived for my first meeting I didn’t know anyone. Jan (Epilepsy Action South Wales manager) put me at ease and introduced me to the group. I burst into tears when I was asked what my relationship was with epilepsy. Now we all take it in turns to have a cry! Just being able to talk about my situation was invaluable for me – just knowing I could express myself and talk to others about my concerns and worries without being judged. The others understood, had experience and could empathise and advise me. Jan has such a lot of knowledge and has the contacts I’ve needed to get additional help. I’ve had really good support and advice from her. My little boy had a nocturnal seizure when he was 20 months old. I was petrified of putting him back to bed. I spoke with Jan and she enabled me to talk to the right agencies and got the ball rolling. Within a week I got a special mat and alarm supplied for my son’s bed, this alerts us if he has a seizure in bed. It’s vital. There’s a much needed social aspect to our group as well, with a couple of nights out a year. We’ve become a group of friends who message and chat outside of the group. We’re all mums, and I’m the youngest mum. I don’t feel any different, if anything I feel I benefit more as I can draw upon the experience of the others and how they managed at different stages of their children’s development. We just all happen to be mums of children with epilepsy, and it’s really worked out well. The group has changed my life. It’s therapeutic and I couldn’t be without that support now." #epilepsy #epilepsyawareness #epilepsysupport #seizures

1515
3 months ago

"I was diagnosed when I was 19 and in the middle of University. The sudden unexpected diagnosis changed my life massively with the seizures was having daily. I suffered for a year, where all I can remember is waking up with oxygen masks on, having to be monitored 24/7, not even allowed to sleep in my own bedroom. I had the most sickening moment when my doctor who was amazing told me he couldn't do anymore and had to send me to another specialist further away. I burst into tears which set my parents off, we cried together and thought this was going to be the life I live, constant seizures and no freedom. I went through a year of weekly hospital visits, disappointments, social barriers, family and myself going through depression. However by the time I was 20, the doctor told me he would try something, the combination of medication - this is where I count myself extremely lucky. I couldn't believe after one year they had found a way of controlling my epilepsy. I now look at my journey and see how much I'm thankful for having epilepsy. I bounced back stronger and I managed to finish my Uni Degree after 5 years! My work is a dream because I found the career I had passion for and if I gave up at Uni I would never have got into the job I am in now. I still worry about having a seizure but I always tell myself, who knows what happens next, just remember to never give up! #NeverGiveUp " Thank you for sharing your story with us Alex 💜 #epilepsy #epilepsyawareness #epilepsywarrior #seizures #seizuressuck #football

27520
3 months ago

"I was halfway through my first year of medical school when I had my first seizure. Eight months later I was diagnosed with Temporal Lobe Epilepsy – the day after my 20th birthday. I went back to University with a new diagnosis, drugs, protocols, limits. I couldn’t drive anymore, swim, drink alcohol, stay out late. Strapped to my arm was a band saying EPILEPSY. My life was different. On the 13th of December 2017, I had a seizure that lasted over 10 minutes and to this day it has left its mark. I noticed everyone was speaking lower than normal. I went to my Neurologist and then an Audiologist and was diagnosed with 80% Sensorineural hearing loss in one ear and 40% in the other. I now wear hearing aids. I felt for a long time like epilepsy had taken everything from me. I was miserable and so angry at the world; that this had happened to me. I was a good person! I had dedicated my life to the service of others. I didn’t deserve this. And that’s where I found my problem. Yes, I didn’t deserve this but neither did anyone else. If 1 in 26 people will have a seizure, what was stopping me from being that lucky candidate? Why was I any better than the rest in order to be spared? Those people deserve it no more then I. This realization is what has got me through the toughest of times. I can’t change what happened and what will happen regarding my neurological health, but I can decide how I deal with it. I won’t let anger and spite be my life. A year on, it’s something I still deal with - there are days when I just don’t want to take my medication, when I want to drive, when I want to hear the joke that everyone is laughing at! But mostly I have put it in a place where I can live with it, deal with it, and learn from it. I am in my 3rd year of medicine; something no one believed I could achieve. I am sharing my story so that if I can help at least one person going through a similar experience as me; it will have been worth it. My name is Andrea and I have epilepsy. But I now realize that I am so much more than that." Thank you so much to Andrea for sharing her story 💜 #epilepsy #epilepsyawareness #seizures #seizureawareness #epilepsywarrior

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