Epilepsy & The Everyday Struggles

Wednesday, 30 November 2016

I ran a poll on twitter a little while ago to ask what people would like my next Epilepsy post to be on, and The Everyday Struggles Of Epilepsy came out on top. So far my first post about my journey with Epilepsy has been my most viewed post. Which is so lovely because I was really undecided as to whether I should write about it, and what the reaction would be. But the support I've received has been amazing and I've had so many people mention that they know very little about Epilepsy. So, if me just being honest and sweary about Epilepsy is opening some peoples eye to it, I thought fuck it, I may as well share all I can about my struggles and raise a little awareness on the way!

With Epilepsy comes a long list of side effects, life changes and struggles. I'll be touching on some small issues, and some bigger ones. Some that just effect self confidence and some that effect life and the quality of it.

Medication is obviously a main struggle, the side effects are numerous and can be felt daily, even sometime can be seen. Luckily for me, after around 4 years of medication and dosage changes I'm now finally on a medication and dose that is right for me. My seizures are pretty much controlled accept I still sometimes experience nocturnal seizures. The first medication I started to take was awful for me, I suffered with almost all the side effect, but they then eventually levelled out. But unfortunately the acne and weight gain took a real toll on me. My skin is now scarred, and I'm still struggling with the weight. 

Concentration and Memory is an issue. Epilepsy can effect you in many ways. But I have noticed concentration is a little difficult, I seem to go off in a day dream after a while if I'm sat in on something that needs my full attention, which is one of the main reasons I'm yet to look into university seriously, as much as I want to become a nurse, I just don't know how I will manage lectures and work load. And having memory effected as well is not the most helpful thing when you HAVE to remember to take medication everyday, but luckily there are medication reminder apps that alarm when its time to take them.

Doctors visits can be an absolute mare, but also important and a regular occurrence when living with a long term condition. But also real fucking frustrating, oh you have health issues? yeah it'll be connected to Epilepsy. Oh you're suffering with long term pain? that'll be connected to Epilepsy. Don't get me wrong, some doctors can be really helpful, but unfortunately not all of them. Even getting a prescription topped up can be difficult. The most basic thing like collecting your meds can be a fucking ordeal.

Self Care can sometimes be hard, life gets busy for everyone. Some nights you may go to bed a little later than normal, some days you're out and about for the whole day, and both of those things can effect me. I've had to cancel plans before now, because I had a fun day, the day before and it completely wore me out, to the point that getting showered was too much effort. It's hard sometimes to think I'm 24 and need to remember to only have one busy or fun day otherwise I will suffer. I'm the worst person for remembering self care is important, because I don't like to stop or be held back. I want to be as busy and enjoying life as much as anyone else my age. But every now and then I do have to just give in and have a lazy day.

Getting ill is a bit of a pain, because not only will you be suffering with a cold , but it can also flare up Epilepsy symptoms, so it's never just as simple as having a common cold. Medication for Epilepsy is also known to lower your immune system. So I can go through periods of illness after illness while suffering with symptoms and also going to work anyway because not all companies are supportive with long term conditions and understanding of what comes along with it.  I do all I can to try and boost my immune system, but taking medication that lowers it just makes me more susceptible to what ever is going around. I've now just come to terms with the fact that if I've stood next to someone that's ill, I'll wake up with it the next day.

So there's just a few of the daily struggles I've experienced. I'm sure I'll be touching on some bigger issues in the near future. 
Have you had any experiences with Epilepsy?

Emily-May xo


  1. I was diagnosed with epilepsy when I was 11 years old after having my first proper big seizure at the age of 9. I'm now 20, 6 years post-surgery, off meds, driving, in second year of uni, and fully discharged from the hospital.
    I hope one day you will be as lucky as I was with treatment.
    ~ Holly X

    1. Oh I'm so happy for you! I had my first tonic clinic with LOC at 7 and wasn't diagnosed till I was 21, so a fair few years with uncontrolled seizures. Specially nocturnal. I'm not on the right meds for me and controlled, working and living a normal life. Can drive again from April! All is good at the moment x