Back to square one?

Unfortunately, as I am writing this, a couple of weeks ago I suffered my first seizure in 15 months. I have found this very difficult to come to terms with even though I knew it was something that could happen. However, as always I’m determined to make the best of the situation so I thought I would put it all down in a blog post and try to raise awareness of how difficult setbacks can be for someone with epilepsy.

15 months?! What went wrong?! that’s what everyone seemed to be saying when I told them about my recent seizure. Everyone (including myself) was starting to believe that my epilepsy was well controlled so this seizure came as a massive shock. Obviously a seizure can happen at any time, no matter how long it has been since your last one, however the longer you go seizure free the more hopeful you become that you may never have one again.

So where did it go wrong? After a telephone consultation with my Epilepsy Nurse they believe it was due to me being run down with a chest infection. Any illness and infection can be a trigger for seizures and unfortunately this chest infection was enough to cause one for me. They are hopeful that by increasing my medication, that I will have enough ‘back up’ so that any infections I may get in the future do not result in any seizures.

Now increasing medication is a WHOLE new subject as it really isn’t as easy as it seems. With many anti-convulsant medications you can get a crazy amount of side effects so they have to be very careful about how to increase your dosage at a steady rate that keeps any side effects to a minimum. If you’d like a blog post about the medication and side effects etc please let me know in the comments as it’s something I’d be very happy to go into more detail about.

So what does this seizure mean for me now? Firstly, I have had to surrender my provisional driving license after having just 3 lessons 😦 I am hopeful that I will once again go 12 months seizure free and be able to reapply for this next year so we will see🤞🏻. In addition to this, this seizure has massively taken its toll on my confidence. Having a seizure and the lack of control is such a scary concept for me and it is something I have to try to push to the back of my mind otherwise I don’t think I’d ever want to leave the house!

I hope that this blog post isn’t too negative and that it enables people to see what really goes through someone’s mind when they’ve had a big setback such as a seizure. Here’s to taking each day, week and month as they come and staying as positive as possible! Let’s hope for a seizure free future☺️

Any questions feel free to send them my way! Thanks for reading, Molly x

Let’s talk all things University

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When and how do I tell new people I have epilepsy? Will it scare them off? How am I going to make friends? What if I have a seizure at uni? These were all things going through my head when starting university, along with a million other doubts and questions.

I am now in my second year at university and I honestly have no idea where the first year went, it’s flown by. However I wanted to make this post as a bit of support for those thinking about / starting university and are worried that their epilepsy may get in their way. Also I thought this was important to bring to other people’s attention to how daunting university can be for someone with epilepsy!

Being on anti-epileptic drugs means that drinking alcohol is a no go. As we all know uni life is often full of it. I was very worried that I would be the only person not going on wild nights out in and around Manchester. However this was not the case. Even though many of my friends & the people I have met at uni, do go out on a regular basis, there are quite a few people who choose not to and nobody has a problem with that.

I was also very lucky to find a supportive friendship group. They are all well aware that I have epilepsy but do not judge me for it. I was worried about them finding out about my epilepsy at first, but when I had a seizure in October (1 month after knowing them) they soon knew about it. It turned out I had nothing to worry about and nobody saw this as an issue.

Tutor & university support is also very important. Now some tutors have never once mentioned my epilepsy to me. I’m not sure if this is because they are scared to do so or they just don’t want to upset me. However I really appreciate the ones that take the time to have a chat with me & see how I’m doing and if there is anything they can do to support my journey. This way I know I have a support network behind me if the worst was to happen.

The main tip that I have learnt from my first year at university is try not to stress. Stress can be a huge trigger for seizures so during my time at university, especially when I have several assignments due I try to plan my time as effectively as possible to avoid any last minute stresses and melt downs! This hasn’t always worked but I’d say it’s definitely helped!🙈

If anyone has any further questions or wants any more tips, I’ll try my best to answer them!

Molly x

Driving , or the lack of it.

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“I’ve just bought my first car” & “I’ve just passed my driving test” are very common phrases you hear between the ages of 17 and 21.

Being a 19 year old uni student you really can’t avoid the conversations about learning to drive. Now don’t get me wrong, I’m really happy that people have the opportunity to learn to drive and are able to take their test at a young age. However, not being able to learn to drive myself (I haven’t yet been seizure free long enough😥) it is something that really gets to me from time to time.

It may sound daft and you may think : why’s she moaning, it could be worse? Well yes it really could, but for me learning to drive was always a milestone I wanted to face at a young age. The freedom of going where you want, when you want no matter the distance. Even just being able to have an extra 15 minutes in bed on a Monday morning because you can drive to work instead of walking. It really is the little things in life that people often take for granted.

Now you currently have to be seizure free for one year in order to apply for your provisional driving license (there’s a chance this can be declined if the doctors do not believe you are well enough to drive but I won’t go into that). I’m currently keeping everything crossed that come November I will be hitting the “apply” button and be waiting to hear if I can finally get on the road 🚗. My bank balance would not be so happy with the cost of driving lessons, cars and petrol these days!!

Learning to drive and owning my first car always has been and always will be a goal of mine. In a sense, having epilepsy has made me even more focused on this. Whether it’s in the next year or the next 10 years I’m determined I’ll get there🙌🏼.

Hopefully I’ll have an update on this in November!

Molly

P.s. You may want to stay off the roads if I ever do learn to drive😂.

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My Epilepsy Story ( so far…)

I was thinking of ideas for new blog posts and I suddenly realised that people reading the blog may actually know nothing about my epilepsy diagnosis or how it all began. So here goes, a brief insight into where it all started :

Before the 1st seizure –

I was in year 5 at school and was non the wiser of what was to come. I was sat in class just like every other day looking at the whiteboard and eagerly scribbling down some notes. But this day was about to become very different. According to my teacher, I began to stare in to space, repeatedly tapping my finger on the desk and became unresponsive. I had no recollection that any of this was happening as I had completely blanked out and even after coming round I couldn’t remember a thing! ( I now know that this was an absence seizure but at the time nobody knew what had caused it. The easiest way to describe what an absence seizure is : I stay conscious however I am unaware of my surroundings, I go blank and I am unable to respond to anyone or anything.) I ended up in the back of an ambulance and little did I know this was the start of my epilepsy journey.

The first “official” seizure –

It was Christmas Eve 2010 and like most children I was extremely excited. I had just woken up and was lay in bed relaxing until the next thing I knew, the bed that I was in was now a hospital one. I’d had my first tonic clonic seizure. These are the seizures that people stereotypically associate with epilepsy and are often referred to as “full blown seizures”. I was very confused as I came round and once again I couldn’t remember a thing. (I never do after a seizure). I ached like mad, my head was pounding and i’d also managed to bite my tongue. The doctors describe it as feeling as though you have just ran a marathon. As the doctors explained to me that I had just had a seizure I tried to take in all the information that they were giving me, but as a 10 year old all I was bothered about was getting home in time for Christmas Day. I had brain scans but theses surprisingly showed absolutely nothing?! Regardless of this they put me on medication and referred me to a specialist doctor. I was told as long as I didn’t have a headache I was able to return home to enjoy Christmas. Of course I told them I felt fine (I would have done or said anything to be able to be at home on Christmas Day) but I may have had to have some paracetamol when I got home for my headache! oops.

Growing out of it? –

Since that day I have changed my dosage of medication on several occasions and even completely came off all medication for a couple of weeks. They believed that I may have ‘grown out’ of having epilepsy and wanted to see if I was able to live without the medication. This was all going well for around two weeks until one weekend I had 5 seizures and ended up in hospital. I was immediately put back onto my medication and continued to see the specialist epilepsy doctor on regular occasions.

Another type? –

I then (kind of stupidly) believed that I would be seizure free. This was until I began to have some strange ‘episodes’ every morning when I woke up. I would drop anything that I had in my hands and my mind would completely shut off for around 2-5 seconds. The way I described it to my doctor was as though someone had turned a light off in my head and then turned it back on. When I mentioned this they immediately said I was having another type of seizure each morning. They named it ‘Juvenile Myoclonic Epilepsy‘ and that was what was causing these ‘episodes’. With it being me nothing is ever straight forward and typically I was on the medication that made this type of epilepsy worse! (only me…) Anyway, I then had to immediately start to transition over to another type of medication. They said I would have had to do this eventually anyway if I ever want children as some anti epileptic medication can be extremely harmful during pregnancy. This transition took a few weeks to successfully complete, however once I did eventually the ‘episodes’ began to reduce and then finally stopped completely.

I am still on this medication today and my dosage was increased around 7 months ago. The scary thing with epilepsy is a large amount of the treatment and medication is a case of trial and error and finding the right combination for each individual. There is no one solution that fits all. Also, of course every medication has it’s side effects but compared to having seizures they really are nothing!

Here’s to hoping for a seizure free year!

I hope this gives everyone a little insight into my epilepsy journey so far and I hope it wasn’t too boring for you to read through.

Molly x

Holiday

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Holidays are meant to be for relaxing and enjoying, right?

If only it was that simple…

The idea of going on holiday sounds great until you realise there’s actually a lot more thought that needs to go into it. Don’t get me wrong I love a good holiday but there’s no last minute jumping on a flight for me!

1. Airports

First things first : Security. Now I know airports and security checks can be stressful for anyone whether they have a medical condition or not. However, when you have three large bottles of medication to get through, the fun and games begin.

Luckily I have just come back from holiday and the security queues at Manchester were relatively small with little hassle. Coming back was not so easy as the Greek security were apprehensive as to what was in the bottles🤦🏻‍♀️ but I got through eventually and could relax. (well TRY to relax)

2. Actually Flying

This issue may just be me because I’ve never been a great flyer, however the whole time I am in the airport I am constantly dreading the time I will spend on the airplane. Now anyone who knows a little bit about epilepsy will know that stress can be a MAJOR trigger for seizures. So as well as stressing about flying I then also start stressing about having a seizure. It really is a vicious circle! With a large amount of reassurance and some good tunes downloaded on my phone I try to relax and “enjoy” the flight as much as possible.

3. Time Differences

Now this one may have some of you thinking “why is time difference such an issue?”….

Well when you have to take medication at a specific time morning and night each day it becomes a problem.🤦🏻‍♀️ An hour or so ahead is not too much of an issue and I’m yet to venture further afield. However, the idea of calculating when to have my medication in a time zone that is, for example, 8 hours ahead doesn’t even bear thinking about!

/ This may seem like a very negative post but I just wanted to raise awareness of the struggles people with epilepsy or any medical condition for that matter, may face when travelling. /

One important thing to take from this is do not let anything stop you!!I have just come back from Greece and already have 3 more trips planned!

Molly x

Who Am I?

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This first post is just to give you a bit of background information about who I am and why I have created this blog.

If you don’t already know, my name is Molly and I am currently 19 years old. I am a student at Manchester Metropolitan University and I am undertaking a BA(Hons) in Early Years and Childhood Studies.

As well as a few other health problems, which I may touch on at a later date, I have the medical condition – epilepsy. Many of you will have heard of the condition and you may know quite a bit about it. Some of you may even have the condition yourselves.

The reason that I have decided to create this blog is mainly to provide people with some basic information about what it’s like to live day to day with epilepsy. (Even if you do already know a bit about the condition, some everyday things that I will discuss may surprise you!) My goal from this blog is to educate and support readers, and hopefully remove any stigmas that people may have surrounding epilepsy.

If you have any questions or would like to see any specific posts please don’t hesitate to contact me. My social media accounts are listed below.

Molly x

Email : alifewithe@outlook.com

Instagram : https://www.instagram.com/mollyslack_/

Twitter : https://twitter.com/mollslack22

Facebook : https://www.facebook.com/mollslack