THE TRUTH ABOUT EPILEPSY

Since my recent re-diagnisis of epilepsy I've been asked the same questions over and over again. Most people don't realise there is more to the condition than avoiding flashing lights and shaking on the floor. Although this can be true for some people, it's a stereotype and isn't always accurate. In fact only 1 in 20 people are sensitive to flickering lights. There are about 40 different types of epilepsy, each person has different triggers and warning signs. Every situation is unique. I wanted to write this post to explain in a little more detail about the condition and how its affected me in the past and now. Grab a cup a tea, you're in for a long read!

Childhood Epilepsy is on arise

Epilepsy isn't just a condition for adults, thousands of children are diagnosed each year. I was originally diagnosed at 8 years old and it certainly changed my life. Childhood epilepsy can certainly be difficult to deal with, not only for the ones affected but also their carers. My mum recently told me about the worst seizure I ever had (sounds like a scary story right?). Well, I was fitting for about 20 mins in total and my mum was a reck, the emergency doctor rushed to our house to help after the ambulance rang to say they were stuck in traffic, seriously! When we finally got into the ambulance the lights and sirens were on, the doctor said it was to rush through the traffic, although this was actually to keep my mum calm. When we arrived at the hospital I wasn't taken straight the children's ward, I was admitted into an emergency ward as they thought I had a few other issues. After I stopped seizing the left side of my body was paralysed, the doctors concluded that I could of had a mini stroke due to the extreme seizure. A few hours passed and I began to regain the movement in my left side, thank goodness! I can't imagine what my family and friends had to go through during this period of my life, I believe, even though I was young I still managed to throw myself a pity party as I did this time round! I really should thank my parents for everything they've done, up until recently I didn't know about these serious seizures as my mum didn't feel the need to tell me as epilepsy was a thing of the past. I guess she wanted to protect me from what happened and I'm thankful she did that.

Symptoms vary

Symptoms of epilepsy can vary from barely noticeable to very dramatic, depending on the area of the brain affected. Some people stare into space, this was a symptom I suffered from when I was younger. I would blankly stare for several minutes then carry on the conversation where I left off not realising that others had moved on by this point. My parents would humour me and repeat a conversation to avoid hurting my feelings. I got a little upset in the past as it was confusing.

Confusion is another common symptom, just after a seizure before I am aware of my surroundings I feel very confused and aren't aware of whats going on around me. I don't always recognise my family or friends, once I was convinced my boyfriend (ex now) was trying to harm me and I'm sure there are other circumstances where I've done strange things. Other people vomit, giggle uncontrollably, have difficulties breathing, loose consciousness, experience tremors or even loose bladder control (sexy I know).

Warning signs
Each person will experience different warning signs, personally I feel exhausted and have headaches before a seizure. When I was younger I would smell burnt rubber before an episode, although the recent ones haven't demonstrated this. Depending on the person, warning signs can be anything. You need to understand your body and how epilepsy affects it to figure out what these signs may be. The sooner you identify the warning signs, the better prepared you can be.

Seizures have stages
All seizures go through a 3 stage process and have a beginning, middle and end. The first stage is where you experience signs of a seizure beginning, these will be smells like how I smelt burnt rubber as a child, sounds, tastes or feel lightheaded. Stage two is the seizure itself, whether it be a partial seizure or a major one. The final stage is where the brain is recovering, this can take seconds or hours depending on the person, usual this is followed by confusion and memory loss. If a seizure lasts for more than 5 minutes, call an ambulance for help.

It's not just about seizures

Epilepsy isn't only about seizures, sometimes the condition can cause a change in behaviour and personality or lead to other neurological problems such as learning difficulties, depression or anxiety. If someone is suffering from these symptoms it should be investigated as epilepsy may not be the cause. I know that I've suffered from a few of these but can't confirm 100% that it is due to epilepsy.

Limitations
Due to the nature of epilepsy certain limitations are put on your life. I believe the hardest one for me is loosing my driving license, a lot of people aren't aware that you have to be seizure free for a year before you are able to drive. Even if you're on medication, you still need to wait a year. That is a long time and it takes away a lot of your independence. I already feel the restriction of not being able to go where I want when I want. On the plus side I'll be given a free bus pass, although you can't use it before 9:30am, anyone who works for a living doesn't get the full benefits. I'm also not meant to ride a bike, for the same reasons that I could cause harm to myself or others. The doctors basically provide you with a long list of things you can't do when you're diagnosed!

Now this next one may be difficult for some people to handle, but for me I think its alright as I already gave this up in July 2016 and haven't touched it since. It sounds like I'm talking about some hardcore drugs but no these are legal narcotics, alcohol. If you drink a lot of alcohol and you're epileptic it's difficult to pull you out of a seizure as they're unable to give you the correct medication. Everyone doesn't have to go to the extreme I have and cut it out completely, but just be aware of the quantity you're drinking as it may save your life having one less drink.

Epilepsy sucks!
To tell you the truth having epilepsy sucks! This can be said about so many other medical conditions too. At the end of the day you need to own it so it doesn't take over your life. You need to learn to accept things that you cannot change. It will be difficult to begin with, but in time everything should fall into place, at least I hope it does. I'm still in my denial / anger stage of the process of accepting everything that is going on but I know I'll be fine. I beat it once and I can do it again! I've just got to be strong and realise that everything happens for a reason and try to stay positive.

Sincerely, Kimberly.

xxx

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MY EPILEPSY RE-DIAGNOSIS

Over the last few months I've been feeling exhausted and when I say that I don't mean just a little tired. I've felt like I've needed a nap in the middle of the day to feel rested. I kept thinking it was strange that I needed all this sleep, turns out I had a medical reason behind it all. Epilepsy decided to make an appearance in my life once again, not something I wanted to deal for the second time but life has a funny way of surprising you. 

I'm not sure if you're aware but there are various types of epilepsy, people have different symptoms and triggers. For me, flashing lights aren't going to make me seize. Yes, I can drink alcohol if I want to although I choose not too. No, I don't pass out 3 times a day and start seizing on the floor. There are several types of the condition, not all of them involve having to avoid flashing lights and shaking on the floor. I wanted to write this post to explain in a little more detail about epilepsy and my experience.

I was diagnosed with epilepsy when I was about 8, I suffered with seizures and had to take a lot of time off school. Up until a few weeks ago I was in the clear for about 7 years and hadn't been on any medication. Over the last 2 weeks I've had 2 seizures and ended up in A&E on both occasions. After years of being in good health, it's strange to loose control of my own body, to feel like at any moment I could collapse again. Luckily, the times it has happened I've been around friendly and thoughtful strangers who have helped me. They were nice enough to call an ambulance and ensure I got the help I needed.

Since I've had a few seizures within the last 2 weeks the hospital ran some tests and confirmed one of my worse fears, that my epilepsy had returned. All the limitations I will have on my life went running through my mind. I feel like I've had a lot of my independence taken away, my ability to drive is the hardest thing I have to loose, I can't drive until I've been seizure free for an entire year. At first I thought "oh I can't drive, but I'll take up bike riding". Apparently, I didn't think this one through and the doctor said it isn't possible either as I could still put myself and others in danger. I also can't swim, take a bath or travel long distances without supervision for a while. For some people these things don't matter, but for me it's a pretty big deal. Especially when I'm used to having the freedom to do what I want, when I want. 

It looks like my condition has evolved and changed since I was a child. Before, I knew my seizures would only happen while I was asleep, now I'm collapsing in the middle of the street at random points of the day. I believe I'm now much more at risk, especially since I don't have my mother by my side as I did when I was younger. I feel disappointed and let down by my mind and body, although I won't let my condition define me. I've got to stay positive and look on the bright side, at least I'm not experiencing seizures everyday like other people. I'll still be able to live a normal life, go to work, travel and do things I love. Yes, sometimes I'll need to rest and take extra care of myself but everything will fall into place eventually. The next step in getting back to normal and ensuring I have the correct medication prescribed. I should be receiving a phone call from the hospital to discuss this later in the week. It may take a few tries to get the dosage right but I'm feeling positive that it won't take long. After this is sorted, it will hopefully prevent any further seizures from occurring.

The recent issues in my health have given me the chance to step back and look at what I can do to help others in my situation as it can be a very scary experience, especially if you don't know what is happening. To help others in my situation my sister Charlotte, my friend Jess and I are taking part in Tough Mudder 2017 and are using this as the perfect opportunity to fundraise for the Epilepsy Society. This charity is the UK's leading provider of epilepsy services, working on new research to understand the condition further, heading up awareness campaigns and providing expert care for those affected. Doesn't that sound like a great cause to support? Well, you can contribute to this cause by sponsoring us via our Just Giving Page. Any donations will be greatly appreciated and go towards helping thousands of people who deal with this condition every day. 

Sincerely, Kimberly.

xxx