Sara
Today marks two years since I was diagnosed with epilepsy. Two years ago I naively sat in hospital thinking I would take a few tablets and that would be it. It's been a struggle to get to where I am now and being only 70 days away from my main goal of getting my driving licence back, hopefully making some special people proud.
Sara
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What a difference a year makes ... The two pictures on the left were exactly a year ago today. I had just come out of hospital after spending nearly a week in post seizure and still needing to go for regular outpatient platelet transfusions due to the after effects of the seizure. Today ... Seizure free for nearly 7 months and ran Manchester 10k for Epilepsy Action. Not the only run I wanted to complete this year but determined to run the marathon in 2018. Grateful for the small improvements and will continue to try and not let epilepsy define me.
Thanks for all your support. Obviously any further donations to add to the nearly £7300 we have raised between me and Jonny would be much appreciated, to help the charity that has helped get me to this point. Sara Challenges – some of us like them, some of us loathe them but in just 7 days, I’m taking on probably my biggest challenge to date – the London Marathon.
Now, those who have been in close contact with me over the past few months have heard nothing but ‘marathon this, marathon that’ or ‘just a quick 10 miles tonight’. You’re probably sick of it, but here’s one last reminder that it’s all for a good…. actually, a great charity. If you'd like to show your support with a donation, click here to visit the page. With just one week to go, here’s something from my point of view. Why? I’m running and raising funds for Epilepsy Action – a charity that helps those affected by epilepsy and supports friends and families understand what it means. When Sara was diagnosed in 2014, I’ll be the first to admit I was clueless about what it meant but more importantly how it might affect Sara. Anyone who knows will know she’s determined and driven or is that a nice way of saying stubborn? She’s read this so it’s ok! To me, it seemed she got on with things, dealing with not being able to drive meant she had to endure my awful driving and remind me how to park. But I never realised that there was a stigma associated to epilepsy, I didn’t realise how this could affect someone and how juggling this with searching for the right medication could and would be frustrating for her. But the charity is a huge help to us both. They provided support to us to help Sara and to help me understand the condition and understand what type of epilepsy Sara has. From there, it was important for me to know what medication she was taking, how often and what dose. But never did I realise how Sara felt trying to adjust her life to manage her epilepsy. So I’m running to raise awareness, to help people understand the condition and what it means. There are a number of different triggers for seizures and different types of epilepsy. But if you ever see someone have a seizure, don’t jump to conclusions like some people did one night I picked Sara up from Manchester after a seizure. A group of guys said ‘she must be on something; she must be drunk.’ But it is the assumption most people would make, sadly. London will be my first marathon. Many of you have already been incredibly supportive in a variety of ways from joining us at our fundraising night in November, sponsoring us but also taking the time to understand epilepsy and what it means. So whilst this is a challenge for me, it’ll be over by Sunday night. The real challenge is helping to break down the lack of understanding about the condition, how it affects those with epilepsy and the importance of knowing what to do if you witness someone having a seizure. I’m incredibly proud to be running for Epilepsy Action but nowhere near as proud I am of Sara. She is such a strong, driven and determined girl who handles everything that is thrown at her. I’m hoping my little jog around London goes someway to helping raise funds for the charity, show support for Sara and maybe encourage one or two of you to take a challenge, whatever you may fancy! We have raised an incredible £6,824 so far. If we could somehow get this up to £7,000 it would be absolutely amazing! Thanks all and see you after the finish line! Jonny Hi all,
For various reasons it has been a while since I wrote on here and since the auction/raffle where we raised a massive total for Epilepsy Action. We just want to thank everyone that came and supported the night and helped us raise so much. Also thanks to Neil and Sentinel we have managed to raise another £320 for a prize outside the auction, taking the total up to ... £6,609.26. A fair bit has been going on since the auction, which has led to the majorly disappointing news that I've been told I'm not allowed to run the marathon ... Due to my seizures returning again after a relatively stable period, I had to try an increased dose of medication. This didn't agree as I couldn't stand up without feeling dizzy and falling into things... most people know I also have a bleeding disorder - so this wasn't a great side effect unless I wanted to use Manchester's supply of platelet transfusions! Therefore the decision was made to add a second medication onto my normal dose of medication. As always it takes a while to get used to this medication and its side effects, which is a process I am still going through. The main issue is fatigue which is something I am currently trying to reduce in various ways as I know it is one of my main triggers. Therefore the decision from the consultant that I can't train for the marathon, although a really disappointing one, hopefully means I can gain control of my epilepsy. I remember from 2012 it is the training for the marathon which is the hardest part (having to train 5/6 times a week) and something I would have had to start last week, which currently isn't feasible. I decided to run the marathon when I thought I had fully gained control of my seizures but this has just shown me how unpredictable the condition is, giving me more incentive to raise awareness and support for the charity. Jonny will continue to run the marathon and fly the flag for the charity! I hope no one who has supported us so far feels aggrieved that I have had to pull out. Exercise will always be good for me (just not the extent of the strain marathon puts on you) so I am determined to complete a few smaller events/runs throughout the year (such as Manchester 10k) and continue to raise awareness of the condition because as I've found out in the last few months it really can have all sorts of effects on you! Happy New Year to you all. Sara x Ps go Jonny and maybe next year. After 5 months of being seizure free and feeling like my medication has got on top of my seizures, my epilepsy has reared its ugly head again, ending with another trip to hospital.
During the seizure I obviously hit my head giving myself a nice black eye ... ending up with concussion. After a seizure I'm normally quite sleepy and a bit confused, this mixed with concussion isn't a great combination. My personal point of view is I hate hearing about what happens during and after a seizure when I have no recollection of it ... I have one exception this time that apparently I was convinced I was born in 1921... Not long till I receive a telegram from the queen! With no recollection from my time in A and E, I woke up the next morning connected to a monitor with a transfusion running. A nurse came to me and asked did I know where I was. My answer i'm obviously in hospital but absolutely no clue what ward i'm on. The nurse was very good, explained what had happened and what medication I had needed. Few more hours sleep and a visit from the consultant I was allowed home in the afternoon to get a better sleep in my own bed, with a promise that I wasn't to be left alone at any point. Also ensuring I saw my neurologist in the next few days. However frustrated and upset I am about this seizure occasions like this spur me on to raise more money for the amazing work Epilepsy Action do. This has given me an even greater incentive to raise more money from the auction evening on 14th November and by running the London Marathon. I just want to say a big thank you: - to the amazing doctors and nurses in A and E - even from someone who works in hospital the amazing work they do in a tough environment surprises me. Although no memory of being there from what I've been told their fast action helped reduce the side effects from my seizure, on an extremely busy Friday. - my family and friends for their brilliant support - anyone who donates blood/platelets - I also suffer from a platelet disorder and the unselfish act of donation is something that makes a massive impact on me. If I didn't receive platelet donations the external injuries from my seizure would be a lot worse. To take a positive from this ... At least i didnt need to spend any money on a halloween costume Sara I often get asked what it feels like to have a seizure, however due to the different types of seizures everyone's experiences are different.
But here are my top 10 feelings and thoughts about when I have a tonic clonic seizure: 1. Fire! Prior to having a seizure I normally get an aura, the most frequent aura I have is the overwhelming smell of burning, often the smell of burning rubber. This is normally my cue to try and get in a safe place if I have time ... 2. What just happened? I am unconscious during the seizure therefore not aware of going on. When starting to come round, I normally feel really confused and have no idea of what has happened. Ever been lost in a maze? That's how I feel when I first come to. 3. My mouth ... After being bitten numerous times, my tongue and mouth are normally the first thing I notice, normally as they are bleeding. I have cracked a tooth during a seizure, so you can see why they tell you not to put anything in someone's mouth who is having a seizure ... it would cause a fair bit of damage! 4. Get me to bed! Often all I want to do is sleep ... then sleep some more. Often accompanied by a headache which will only go away with sleep. 5. Have I been running? Due to the nature of the seizure causing the muscles to contract, post seizure it often feels like I've just done a heavy workout at the gym. This can last a few days. 6. Count the bruises Normally after I've slept for a while, I assess the damage the seizure has done. I've had my fair share of injuries causing various hospital trips/admissions/appointments. 7. Embarrassment This comes at any point post seizure depending on how long it takes me to come to and understand what is going on. No matter what anyone says to me/advice I get given ... I have always felt embarrassed post seizure and with me this feeling lasts a while 8. What caused it? This is a question for when I'm feeling back to myself. Was there a trigger? Was there something that caused it which I could change/avoid? Often it is speculation as to what caused the seizure, often lack of sleep and tiredness 9. Keep a note of it I have to record every seizure I have so my neurologist is aware of what is happening and whether my medication needs to be tweaked or changed 10. Let's hope that doesn't happen again ... Hoping that is the last one. Like I said this is only my account of how I normally feel after a tonic clonic seizure. But I hope in some kind of way it answers peoples question of 'what does it feel like?' Sara Everything for the raffle/auction is starting to come together. Lots of people have been very generous in donating prizes, time etc. One of the main reasons for doing this is to raise awareness of epilepsy, so over the next few days/weeks I am going to be writing blogs on every aspect of my epilepsy, from medication to what it's like to have a seizure and the aftermath. So I thought I would start it with how being diagnosed with epilepsy made me feel.
Even though it is over a year ago I remember the day at the hospital like yesterday when the consultant said "you have epilepsy". He went onto to tell me what happens next, medications and more hospital visits etc. but I wasn't really listening. My GP had already told me before referring me to the neurologist his thoughts were that I had epilepsy, but before the consultant confirmed it I still had hope that they were going to say nothing was wrong. My initial thoughts were:
87 people a day in the UK are diagnosed with epilepsy a day, I wonder what the other 86 people felt on 21st August 2014... When I first got diagnosed and started on my anti epileptic drugs, I agreed to be part of a research trial, looking at the difference between standard and new anti epileptic medications to see which are most effective and which ones make the best use of NHS resources. It had no real impact on me other than a computer randomly selected which medication I first started on. But as part of the trial every three months I complete a 24 page questionnaire which extensively looks at all aspects of my life and how the condition affects it. It ranges from what medical treatment I have needed to receive and my physical symptoms to how the condition has impacted on my working life. A large proportion looks at how the condition affects my mental health. There are seven pages of comments such as "i feel some would prefer to avoid me", "i have little control over things that happen to me", "i feel cheerful", and I have to rate whether I strongly agree, agree, disagree or strongly disagree. It is quite a time consuming process but if it helps with the study and has a positive impact on the services for people with epilepsy in the future this is only a good thing. The questionnaire also makes me sit down and think about my epilepsy and the impact the condition has on my life, rather than trying to ignore it. So hopefully when I complete it today I will see some positive inprovements I have made over the last three months. Sara The first blog ... Last bank holiday Monday, I had a few errands to run in town. Recently my epilepsy is stable so I've been doing this kind of thing on my own. In my purse I carry an ID card, its quite large and can't be missed when I open my purse with the heading "I have epilepsy". I carry this card in case of an emergency, it has basic first aid for an epileptic seizure and who to contact. I was stood in a queue waiting to pay in a shop whilst in town, opening my purse to see if I had any cash, the gentleman behinds me says "are you one of those funny epileptics?" I turned around and obviously had a look of shock on my face. He then continued to ask "are you one of those that have those funny dos you see on TV?" Not being on the ball to come up with a better answer I just said "I don't find it funny, but yes I do have epilepsy" I then left to carry on with my day. I am still unsure whether he was trying to make a joke, or this was his view of epilepsy. But this is why more awareness needs to be raised regarding Epilepsy and to help change the attitude towards it. All the more reason to support the work Epilepsy Action do, as I can't speak for others with Epilepsy but I know a comment like this does knock my confidence. I just hope the gentleman if he came across someone having a seizure wouldn't just stand and laugh as he found it funny! Sara |
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