In words of Noah "I DID IT!!!" This isnt the post for me to talk about my journey yesterday but the one for me to talk about the remarkable people I carried with me. As you all know I dedicated each mile of my London Marathon to a person affected by epilepsy. I asked each person to give me a short insight to their life/experience with epilepsy. I wanted to show that epilepsy has many faces and affects people in different ways. These are the stories I have been told, these are the many faces of epilepsy These are “my” 26. Please have a read and if you wish to donate you can do so here: justgiving.com/faye-waddams . I have left all the paragraphs as they were sent to me so you get a real insight into each person.; behind each person is a whole family affected by this condition. Thank you to you all for allowing me the honour of running with you and your loved ones. What I did Sunday is nothing compared to the battle these guys face every day with epilepsy. You carried me every step of the way, I only I hope I did you proud.
MILE 1: COLE
Cole is 12 years old and developed generalised epilepsy following his recovery from meningitis when he was 18 months old. He takes anti seizure meds twice daily. He now has about 4-6 seizures a day, down from 15, mainly partial but with a few others, these do not prevent him from doing stuff. His Mum Annabelle says “Yes we watch him carefully but epilepsy will not stop him. He is a cheeky lad who loves to laugh.”
MILE 2: LEANNE
“I was diagnosed with Epilepsy at the age of 23 just 3 years into my career as a Met Police Officer. My diagnosis hit me hard. My dreams of becoming a Police Dog Handler ended.
I had just bought my own flat so suffered severe anxiety, fear of leaving the safety of my flat etc. I hid it well from family & friends as I didn't want to be seen as weak. I didn't get any support at work so had to just carry on.
Medication wouldn't stabilise it but eventually it calmed down. It still controlled me though. The fear of having my next seizure meant I had to risk assess everything. Even my wedding which should have been the happiest day of my life had to be risk assessed. I only invited 20 people to the church as I didn't want to have a seizure in front of everyone. I had an emergency signal to my Dad & Reverend to say if I needed to stop the ceremony.
2 years ago the frequency of my seizures got worse and I'm still struggling to find the correct medication. I'm a bit more open with people now about how I feel and have learned to listen to my body and rest.
I've known Faye for a number of years through work and knowing her and reading her blog has helped me to accept my Epilepsy for what it is. It's not me it's just that I have it and will fight it.”
MILE 3: KIRSTY & HER TWINKLE TWINS
Kirstys Mum Debbie writes “In memory of Kirsty Walker and her twinkle twins SORAYA AND REGAN sadly fell asleep for the last time Xmas eve. Epilepsy can be a cruel and painful condition to live with. Kirsty remained strong throughout her life. We must all be strong together x”
MILE 4: LUKE
Laura, Luke’s partner dedicated this mile to him “Luke was diagnosed with epilepsy in 2011, from out of nowhere our lives turned upside down. Late onset epilepsy is harder to get to the bottom of, for many years there was no explanation to it at all. After many tests in Cornwall, where we live, London Queens square, at the Epilepsy Society in Chalfont and Bristol Southmead, he has been diagnosed with left frontal lobe caused by cortical dysplasia. Being his carer pretty much sent me into a place I has never been before. At present he is undergoing tests for the possibility of brain surgery. They hope to remove the area casing the seizures, this decision is going to be made in a week! It's a scary time for him and a huge thing to think about.
Epilepsy came at him from nowhere, took away his confidence, his independence and his dignity at times. All I can do is be there when things get tough, in his darkest moments, when the world crashes down on him like a landslide. Being his carer can be pretty lonely at times, I'm powerless to help. One comfort we have is the friends we've made in this journey, support from those going through the same can be a light in the darkness, so if there's one thing I'm thankful for since diagnosis it's that! ”
MILE 5: PICKLE
Pickles Mum Kate has told me “he is currently being investigated for it 😓. Mile #5 please as he's desperate for his 5th birthday. He's had 3 unexplained episodes which I think were Myoclonic Jerks and it looks like he's started with Absences. Hoping I'm wrong but back at Neuro on Friday!! “ This was then updated after the appointment “Finally, after having what appears to be absences, they start to take it seriously. Still no EEG referral BUT they're seeing him again in 4 months. With a diary and videos of any absences. They also gave me the secretary’s number in case his appointment needs be brought forward. They now accept that he's at an increased of Epilepsy due to relatives having it.”
MILE 6: RUBY
Ruby’s Mum Tania says “Ruby was diagnosed with epilepsy in February 2016, when she was just 8 months old. This has impacted us massively as a family. Her sister now has a fear of ambulances due to the many times she's seen Ruby taken away in one. Ruby is on daily AEDs and still not fully controlled! Epilepsy sucks, that is why raising awareness is so so important.”
MILE 7: CASEY
Casey Mum Natalie tells me “My son Casey was diagnosed with epilepsy after an extreme status epilepticus seizure. His trigger was fatigue so after returning from a holiday in Mexico he had his second status epilepticus. He generalised epilepsy and was on epilim for 3 years. We weaned him off last year over a six month period and he has been seizure free for 2 years. Obviously we can never say never but things are looking good. He struggled at school for a couple of years as the seizures damaged his hearing but is now doing much better in his first year at high school. “
Mile 8: JACQUI
“My name is Jacqui and I'm 37 years old. I was diagnosed with epilepsy at 8 years old and was put on Tegretol. Very few seizures and by the age of 15, I was off all meds, declared seizure free and was told I had suffered with juvenile epilepsy.
Well, we know the next bit of the story and come 21, I was having complex partial seizures and was back on Tegretol and they'd put Epilim in as a 2nd med to keep it under control. This worked ok with a few seizures here and there. They took me off Epilim just before I got to 25 and replaced it with Keppra as they were convinced I'd want children and therefore could not be on Epilim. My seizures are now more frequent and I've tried other meds and am currently on Tegretol SR, Keppra, Gabapentin, Vimpat (although I'm trying to get the neuro to stop it - awful side effects) and Clobazam for seizure clusters. My seizures are worse just before and during my periods.
I have been diagnosed with temporal lobe epilepsy and they are looking at surgery for me. I've had every MRI type scan going and have also had video telemetry. They caught the seizures after they took me off the meds and I managed to scare the staff terribly in Queens Square as the only way I could get comfy with all the EEG leads was to sleep on my stomach...They constantly woke me up to move. So drug and sleep deprived I was having seizures but there was nothing on the scans to show where exactly the epilepsy was coming from.
I'm on the waiting list to have intercrannial electrodes implanted to see if that brings them any closer to what is actually going on up there. All my scans so far are free from any tumours, lesions etc so they aren't 100% sure now that it's temporal lobe but all that I do during a seizure suggests it is. So whilst I'm on the list, I'm also trying other meds and that's how I'm on the Vimpat. I was meant to get to 250mg but with only 50mg causing the worst insomnia I've ever known (I'm usually tired as anything) they've got me taking it in the morning and kept me at 50mg until I go back to Queen Square. I may possibly go back to Epilim as I don't want children and am willing to try this again as it did seem to work well in my early 20's. Fingers crossed that something works.
I know Faye through blogs people have retweeted on Twitter/Facebook and have found them useful as sometimes when you feel you're the only person suffering, it's useful to see that you're not. “
MILE 9: SKYLA
Skyla’s Mummy Av writes “Skyla was born prematurely at 32 weeks with severe brain damage which has caused a number of major medical problems, and a much reduced life expectancy as a result. She was diagnosed with Epilepsy on her 1st birthday, but had been suffering seizures since birth. She has more recently been given a diagnosis of Lennox Gastaut Syndrome. Despite trying numerous AEDs, at the age of 8, and taking 4 daily Epilepsy medications, she continues to struggle with 400+ seizures every single day. Epilepsy has taken away so much from her - she can no longer eat, she can't smile, laugh or cry, she can't get her hands to her mouth to self soothe. She experiences a variety of different seizure types, sometimes in excess of 10 full blown tonic clonics in a day which leaves her exhausted and unable to enjoy the quality of life she deserves. We have run out of treatment options because of all her other medical issues, she is not a suitable candidate for a VNS and the AEDs cause such horrific side effects alongside the 8 other daily medications she needs to stay alive that all we can do is try to maintain the skills shes got, whilst battling against the seizures that are ever present.
We met Faye through an online Epilepsy support group when Skyla was first diagnosed, throughout the years she has been a constant support and a wonderful source of advice as she is able to tell us what a seizure feels like, so that we have some idea what Skyla experiences. Friends for life ”
MILE 10: OLIVER
Thomasina chose Mile 10 in memory of her son Oliver. “Oliver was my first born. He cried solidly for the first 6 days of his life and would only go to sleep to the sound of the hoover-which we recorded and played every night. He was beautiful. He was diagnosed with Juvenile Myoclonic Epilepsy soon after his dad died, when he was 13 and it caused his death when he was just 19. He hated having Epilepsy and I hate it for taking him. Thank you for remembering him and supporting others. Thomasina x”
MILE 11: BECKY
Becky’s Mum Sandie writes: “I'd love mile 11 please in Becky's name - as she was 11 when we lost her to SUDEP (Sudden Unexpected Death in Epilepsy). It will be 13 years on 4th May but she is still so much a part of my life and who I am x”
MILE 12: RICH
Rich’s Mum Rich picked Mile 12 for Rich who recently turned 12. “Rich was diagnosed when he was 9 after starting with face twitches and nocturnal seizures. He also has daytime absent seizures which have got worse following his transition to high school.
I too have Epilepsy and was diagnosed five years ago with partial-complex Epilepsy.... I had a terrible few years with four or five seizures a week but my medication now controls it really well and I'm nearly 2 years seizure free (although recently had a break-through blackout).
Rich is currently under the surgery team at Birmingham children's hospital as an MRI revealed an abnormality on his brain which could be the cause.
He's always positive, smiling and usually planning how to raise money for YES !!!”
MILE 13: OWEN
Owen’s Mum Lisa picked the halfway point for him. “Owen is 18, was originally diagnosed aged 5 but we thought he had grown out of it and then aged 11 ended up in PICU and has been on daily medication since. He has just celebrated a year seizure free but is undergoing his second drug transition in 6 months due to side effects. He speaks openly and publicly about all aspects of his condition and as well as being an ambassador for Young Epilepsy, he sits on the Royal College of Paediatric and Child Health's Epilepsy board. He has been given 5 unconditional university offers and is currently preparing for his A level exams this summer. “
MILE 14: CODY
Cody’s Mummy Joanne asked for a mile in his memory “When Cody was born he didn’t open his eyes and at 3 days he opened them for first time but only wee slits. At 2 weeks his arm and leg turned in and I was told it was fine. At the 6 week check I was told his head was bigger than it should be and would need to be referred. They did a brain scan and found out he only had 30% of his brain and the rest was fluid. We were told that with any brain injury to expect seizures and within a week or 2 he took his first seizure. He took lots of seizures every day. Some tonic clonic, some absences, some just eye lashes fluttering. I think he took gelastic seizures but wasn’t seen by a doctor as they weren’t all the time. As he got older his seizures got worse and he developed dystonia and had dystonic attacks on top of epilepsy and other disabilities. Cody was hospitalised numerous times due to seizures and was in intensive care several times. He was on midazalom and nitrazopam for seizures and oramorph for dystonia along with other meds
He had seizures most of his life and was a happy child. He passed away aged 8 and no one knows why. People mentioned SUDEP but we don’t know for sure.”
MILE 15: WYATT HUNTER
Sasha picked Mile 15 for her son. ”Wyatt is 19 months and he started having seizures just a few days after he was born. Originally they thought ideas connected to my medication during the pregnancy but after 6 months they realised that it wasn't. He had all the tests and was tentatively diagnosed at 13 months, when he was having around 10-12 seizures a month. 6 months later they confirmed it. I blame myself obviously because of the medication during the pregnancy.
He's doing fabulously (according to his Dr) & has just started nursery which he absolutely loves. And even with the epilepsy he is a bouncing, happy boy who is into everything usually at 100mph!
Fayes blog is what got me through my pregnancy - it was the only support I had. It gave me sanity on many a day. :) “
MILE 16: CLAIR
“I was diagnosed with epilepsy 14 years ago when I was 18 years old after having a few tonic clonic seizures while running. Medication has helped reduce my seizures but I have only managed to get seizure freedom in the last couple of years and who knows how long it will last but while the going is good I am living life to the full and running a marathon to show epilepsy who is boss. I am blessed to have a wonderful family and husband Rich and two gorgeous kids Riley who is 4 and Benji who is 18 months. I try to support others with epilepsy through my blogging and volunteering for epilepsy action. I met Faye through blogging as we both blog about epilepsy and being a mum and met at the Young Epilepsy awards.”
MILE 17: ELIZABETH & KEITH
Colin Moore has dedicated Mile 17 to his parents. “Both my Mum and Dad lived with Epilepsy throughout their lives. They met in 1973 while they were both residents being cared for at the Epilepsy Society Centre at Chalfont in Buckinghamshire, England. In 1978 Mum and Dad married and moved to their own home in East Sussex, England. Two years later in October 1980 I was born.
1992 was a year of tragic circumstances. On January 28th of that year Dad passed away due to the Diabetes he also suffered with. Mum returned to The Epilepsy Society Centre shortly afterwards to be cared for again. Just seven months later on 27th August Mum tragically passed away due to SUDEP.”
MILE 18: ASHLEIGH
“My epilepsy story is... On 28th march 2011 my life changed I had my first epileptic seizure, the only thing I remember is that night I woke up and checked my phone it was 3am and went back to sleep, then waking up in hospital. My family told me what happened, our 3month old puppy heard me fall out of bed from the next room, she went mad woke my sister up, who then woke my parents up, apparently I was having a seizure on the floor it was new to them as well as they had never seen someone have a seizure so they didn't know what to do, but the ambulance arrived and I was ok. Another seizure on 1st May 2011. After lots of tests I was diagnosed with epilepsy (JME) and I started my medication in August 2011..
I was 18 when I had my first seizure and It was scary I didn't know what epilepsy was and thought my life was over, didn't know who to turn to. Took me a long time to adjust and accept I had epilepsy and to take back control of my life and not let epilepsy control it, took me a very long time as I felt alone and I didn't find my doctors/neurologist could give me answers to my questions, I had to find the answers myself I didn't know what form of epilepsy I had until about 3 years since being diagnosed once I knew it was Juvenile myoclonic epilepsy (JME) I could look it up and get more of a understanding.
In 2012 DVLA gave me my provisional license back I was so happy I could start learning to drive again, I passed march 2013... finally a bit of independence back until October 2013 things changed... I was at a friends wedding and had a late night and next morning I drove to local shops to get breakfast come home and starting cooking it, I remember the smoke alarm going off, I wake up laying on sofa confused. My sister woke up hearing the smoke alarm to find me laying behind the kitchen door blocking the door so she can't get in to turn hob off but also she can't get in to check on me, my parents were out walking the dogs, so things could of been worse if my sister wasn't home, the thing that scared me the most was I was driving my car like 10mins before my seizure! Gave my driving licence up and got it back 2015 I didn't let what happened in 2013 put me off I didn't want epilepsy to take back control.
I've had epilepsy now 6years and Currently I'm still seizure free since 2013 And I've finally accepted my epilepsy, life now is good 😊
I know Faye from her blog that I come across via twitter 😊
MILE 19: KEVIN
Michelle chose Mile 19 for her son. “Epilepsy was never a part of our family’s life, until my Son, Kevin, was diagnosed with epilepsy at the age of 13. His diagnosis hit us all hard, however not as hard as it hit Kevin, it sent him into a downward spiral over the course of the next two years becoming more withdrawn spending more and more time at home in his room. At the age of around 15-16 It seemed we had a breakthrough in grasping hold of Epilepsy and Kevin had a relatively short seizure free spell of about 18 months, suddenly his dream of working with Cars seemed to be in his reach, as his 17th birthday approached we applied for his driving licence everything had been going so well for him, then two months after his 17th birthday we all suddenly realised how unpredictable Epilepsy can be when he had a huge tonic clonic seizure the biggest and longest we had seen, the next day his provisional licence hit the door mat, unfortunately it was taken away before it had hit the door mat. This hit Kevin in a bad way and so began the new cycle of seizures back to being unpredictable and began happening more and unfortunately in college where he became 'the kid who had first Kevin struggled with the talking and whispering behind his back, the college wasn't particularly supportive and Kevin no longer felt he could complete his mechanics course any longer and unfortunately quit college and the downward spiral began once more.
Now, 18, he lives with focal, tonic clonic and nocturnal seizures and often experiences auras, which give him a 30 second warning before he has a seizure, and he is currently 2 months seizure free. After being transferred from paediatrics to Neurology we were invited to meet with Dawn Oliver a Regional Support worker from Young Epilepsy who has been a breath of fresh air. Now, 18, he lives with focal, tonic clonic and nocturnal seizures and often experiences auras, which give him a 30 second warning before he has a seizure, and he is currently 2 months seizure free. After being transferred from paediatrics to Neurology we were invited to meet with Dawn Oliver a Regional Support worker from Young Epilepsy who has been a breath of fresh air.
Since receiving support from Young Epilepsy, my Son has come on amazingly. He is less resentful and more open and honest and accepting about his condition. He has become more confident in his life compared to before, where he wouldn't go out and quit college after he couldn’t handle the whispers and multiple seizures. Kevin has now managed to get himself an apprenticeship, despite his recurrent seizures and is lucky to have found an employer who even though knew very little about epilepsy believed in Kevin and his abilities and works with Kevin to ensure everyone in the workplace is seizure aware and knows Kevin's 'seizure drill' and has worked really hard to ensure Kevin has a safe working environment and accepts Kevin's epilepsy as being a part of Kevin and it's never considered a hindrance.
All of these things are helping Kevin slowly grow into a man I'm truly proud of.
Faye I know through the Young Epilepsy Challengers group and watched her take part in the Great South Run 2016 and after speaking with her in the few weeks afterwards helped me to realise I can do it too and Jan 2nd this year was when I got off my sofa and I'm now starting my running journey so I too can take part in GSR 2017 ”
MILE 20: LAUREN
“I got diagnosed at 15 and when I was told I would have to go onto AEDs I couldn't understand relying on drugs for the rest of my life. It scared me to death. Now 21, I have got my head around it but still wish I didn't need them.
Said AEDs have now controlled my epilepsy so I am seizure free! One thing I would love to make people aware of is about the people with controlled epilepsy and how it still has such a huge impact on us - Meds, side effects (Mood swings, anxiety, depression in my case), and because it is so hidden people don't believe/mock the condition.
I know Faye through the Seizure and Epilepsy support group on Facebook.”
MILE 21: TORI
“I started having seizures in 2014 just after my 18th birthday. I went undiagnosed for years and was really embarrassed about it. Finally in August 2016 I was diagnosed with epilepsy following a cluster of seizures which put me in hospital needing rescue medication. After diagnosis I went through a really rough patch and completely lost myself, as I got better I decided to head back to work which has been amazing. I still have seizures but I'm more comfortable with what's going on now and have the most amazing support which I wouldn't be where I am now without it! I met Faye through blogging! She really inspired me and myself and a few others chat nearly everyday since connecting online! She has been an amazing support for me and I'm so lucky to have met her!”
MILE 22: MIKE
Suzanne picked Mile 22 for her son Mike. “Mike was diagnosed December 2009 aged 15. Had severe seizures for best part of a year. Working as a Team Leader at Tesco now and able to drive. We know Faye through Facebook support groups.”
MILE 23: JESSICA
“I've had Epilepsy for half my life over 15 years. It was a huge struggle, and up until recently about two years ago have I learned to accept it. Now I embrace each day with "seize the day", after years of being afraid of everything. I don't listen to the "you can't s anymore and am Happy. I met Faye through an online support group, and have built a friendship around our love of Running and our struggles with Epilepsy as well as her Amazing blog.”
MILE 24: GARETH
Gareth’s wife Lucy picked Mile 24 in his memory. “Gareth, lovingly known by friends and family as G, never let Epilepsy restrict him and believed in living life to the full. He was sadly taken in July 2013 to SUDEP (Sudden Unexpected Death in Epilepsy). We pray as a family that one day there will be openness and prevention of SUDEP. Missed greatly everyday and in our hearts always. Much love to Faye for her generous heart ”
MILE 25: ABIANE
Adele picked mile 25 for her daughter Abiane whos birthday is the 25th she writes; “You are running the marathon 10yrs to the day that she had her first febrile convulsion, which turned out to be epilepsy, she's now been seizure free for 5.5yrs and medication free for just over 3yrs x “
MILE 26: MATTHEW & DANIEL
Debbie dedicates a mile to her boys.
“Matthew has had epilepsy since 3 months old, he has Lennox-Gastaut Syndrome, he has over 100 seizures a day still, has tried numerous medications and also the ketogenic diet twice Is waiting for a new date for a VNS.
Daniel has had epilepsy since he was 2 months old, he has West Syndrome He has over 100 seizures per day Has tried numerous medications
I know Faye through an epilepsy group”
Last but not least I dedicate 26.2 and my medal to my precious boy. To all of those who helped bring Noah into this world safely and made a tough ride easier. My neurologist, epilepsy nurse and obstetrician who I fully believe are the reason my boy is here safely. The ambulance services, resus staff, A&E staff and ward staff who treated me at each point. The midwives and nursing staff who helped us in the early days with Noah. My work colleague who stayed with me, Alex who pretty much put her life on hold to be with me and the strangers who helped me when I was in no state to look after myself. Each and everyone of you will never know the gratitude I have, or the place you now hold in my heart and I will never be able to repay that. We always say Noah is our miracle and after all of that…
“The miracle isn’t that I finished, it’s that I had the courage to start…”
If you would like to donate please do so here: justgiving.com/faye-waddams
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.