EPILEPSY AND ME: THE HIDDEN DAILY STRUGGLES

I was diagnosed with Epilepsy following a car accident in 2007, and since then my life has changed dramatically. There are so many normal things that I used to take for granted that are a struggle for me now. Even though I have been seizure free for a number of years, the affects of epilepsy never go away. I was a completely different person before epilepsy to the person I am now, and it has taken me a long time to come to terms with the new me, and the limitations that I now have due to my epilepsy. I'm so glad that my seizures are controlled by my medication, but I have to stick to a certain routine, and stay away from certain situations to make sure that I don't have seizures again in the future. Plus the medication I take to stop my seizures gives me a whole host of symptoms every day too. Today I'm going to tell you a bit about my hidden struggles, as I don't think many people know that much about epilepsy, or hidden disabilities in general.


EDUCATION

I was 19 when I started having seizures and I was still in university. One of the first impacts my seizures had was that I had to quit education. I was no longer able to concentrate in lectures, and I just couldn't retain the information that was being given to me alongside my seizures. It was devastating, and although I have tried to go back to education since, even trying to study with the Open University, I have just not been very successful. You see I can't learn like I used to be able to. I used to be really good at remembering things, and was quick to learn new things. Now I can't remember things I've been taught as easily, and I have to keep writing things down again...and again...and again. 

I took classes in Japanese for a year before my daughter was born, and although I loved learning, I couldn't keep up like I used to be able to. I just couldn't memorise all the different symbols. I couldn't speak the way everyone else could and it was just so frustrating. Although I am still learning Japanese at home, I end up leaving it for weeks at a time as I get so annoyed that I have forgotten everything I learnt the day before.  That's one of the reasons I have taken up blogging. It's something I know about, and it's something that I research lots. I know that I can work from home and learn at my own slow rate without having to keep up with other people.

WORK

I recently came to the realisation that I will never have a "normal" job. I can't guarantee that I will feel well enough to work for a certain amount of hours, at a certain time every single week. I have no idea if I'm going to wake up feeling exhausted, or dizzy so I can't just go to a daily job every single day. There are so many variables at work too to think about...will I have to stand for hours, what will the temperature be like, will I have to be left alone to work....it all becomes very stressful, and stress is one of my triggers when it comes to seizures. As is temperature and I can't stand too long either. Also lights in the supermarket and office environment have caused me to have seizures previously. I'm not too lazy to work a normal job. Trust me, I have tried and tried again. I am simply unable to.

I have some horror stories when it comes to work places too. I've had seizures at work places before and one place put me in an ambulance alone and shipped me off to the hospital. I woke up not knowing where I was and with no money, or any idea how I was going to get home. I had to take 2 buses to get home by myself....then they expected me back at work the next day. 

SELF CARE

I cannot shower or bath on my own. I have to have someone sit with me in case I have a seizure. Heat is a huge trigger for me, and I overheat just sitting doing nothing, so add in the heat of a shower and an enclosed space and it just isn't a good situation for me. I've had seizures in the shower, and the bath, before. I've had to have a housemate I barely knew (who was male) break down a door so that I didn't drown whilst sharing a house at university. It's hard to ask someone, even my husband to watch me in the shower or bath. That's supposed to be a relaxing time, but when you are aware that the heat of the water, or the confined space making you hot even when you are running cold water could make you have a seizure, it makes you no longer want to take care of yourself. Luckily there are companies like Millercare who provide aids for helping with things like bathing and preparing food.

I also struggle to use things in the kitchen, like the oven. Opening the door and that surge of heat makes me feel pretty awful and I've developed a fear of using the oven. I only use it when my husband is home now so he can take the food out for me. I don't wash up with hot water either. The whole body temperature thing is a total killer!

GETTING OUT AND ABOUT

As I'm seizure free at the moment I am able to drive, but I did have my license taken away when I was having seizures before. I live in fear of having a seizure now because as soon as I do my license will be taken away and a bit of my independence will be gone.

Public transport isn't always great when you have a disability, and with a hidden disability no one can see that I may need a bit of special treatment. I recently went to London and the tube was very busy. I didn't have to confidence to ask someone to give up their seat so I had to stand in the heat and I could feeling myself starting to feel pretty unwell. I sweat profusely which can be very embarrassing, and my face goes bright red, which makes me very self conscious...which leads to me stressing and making my anxiety worse (just another symptom of my epilepsy). This makes me not want to travel, and it means I have to plan every single thing I do to prevent me stressing or panicking. I've been known to put my google maps on street view and track an entire 200 mile journey so that it seems familiar to me, and so that I can recognise parts of the journey.

Everything is unpredictable. I had to stay in Manchester an extra night at the weekend after a blog conference as I was just too tired to drive home after the event. Something that wouldn't have phased me before epilepsy. I know I can't even do a two hour trip after an event now which really sucks. The extra expense of having a disability is not something that people think about either.

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There is so much more I could tell you about the things I took for granted before I had Epilepsy, but I'm going to end this post here. I will be trying to write more about topics like this as the more I speak to people, the more I realise how little people generally know about Epilepsy, and that it isn't just all about being down on the ground and having a seizure. I've got some shocking stories to tell, as well as some funny bits to post about too, so they won't all be as serious as this one!

If you have any questions about Epilepsy, please do come and ask me. It's best to email me or you can message me on twitter.

SARAH HUGHES
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3 comments

  1. I can suggest something if you are willing to try
    Visit kcm.org and read one article daily then you can email me on what you have learned and I might help you fill in the gaps.

    Email me at tessa.doghor@outlook.com

    ReplyDelete
  2. It's nice to see someone post about the hidden side effects. I've had nocturnal epilepsy since I was 7 and anxiety is something that I also suffer with.

    ReplyDelete
  3. Very well written.
    Yes, I can understand the pain. Because one of my beautiful son have epilepsy as well.

    ReplyDelete

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