What is it really like to live with epilepsy?

January is always a month of new goals, new dreams and new resolutions. January is the time when everyone decides to change their lives, slimming group membership doubles and the gyms are full of new members who most likely will leave their membership cards in their purses gathering dust by the time March rolls around. There is nothing wrong with setting yourself goals for the year ahead and starting the new year with a positive mindset. In fact it’s a great thing, but I don’t want to talk about the positive side , instead, I want to focus on what it’s like starting a new year with a chronic medical condition.

My goal for this year, alongside losing a few pounds, is to be totally open and honest about what my life with epilepsy is really like, the good, the bad and more often than not the ugly.

I would like to think that I am naturally a positive person. I do my best to always see the good in people and situations and my house is always full of laughter, granted a large percentage of the time the husband and teenager are laughing at me but you get my point. Despite my happy mentality, living with a chronic condition is hard, it’s more than hard, some days it’s almost impossible and here’s why.

The first thing that makes it so difficult is that people just don’t understand it. You cannot see epilepsy which generally makes people believe that it is not life changing or in some cases not even there (but that’s a story for another day). Let me be totally honest with you all, just because I am not physically having a seizure does not mean my epilepsy is not causing me problems. The biggest problems actually start when the seizures stop.

First there is the constant headaches. I have a headache 90 percent of the time. It is caused by three things. First, the medication I take. Medication is a double edged sword. I need to take it to control my seizures but it comes with rubbish side effects, one being headaches. Secondly, my brain over works. Parts of my brain over compensate for the parts that don’t work correctly, making my headaches worse. Finally I have something else wrong with my brain (another story for another day) that also contributes to the already violent headaches. Have you ever tried to work a full day, clean your house, cook dinner, help with homework and revision, do your own planning and everything else that needs to be done on a daily basis with a headache so bad you can only open one eye. It is horrendous and almost impossible.

The second biggest issue is the different way my brain now works. I no longer have the ability to do more than two things at once, sometimes I don’t even have the ability to do two things at once!. There are times when my brain is so tired that I can’t understand what people are saying to me. My brain just loses the ability to process everything. This normally happens on a night time, after a busy day.

There are plenty more physical side effects that impact on my life everyday. If I wrote about them all his blog would be fifty pages long!.

What I really want to talk about is the mental side effects of epilepsy. This is not often a topic I would choose to talk about, certainly not with people I don’t know, but I have come to realise that it is important. Since my diagnosis of epilepsy my confidence has dropped dramatically. It’s hard to feel confident in yourself when you can’t have a bath without being supervised and have to stop running because you’re a danger to yourself. It’s difficult to be confident when you always have bruises and constantly feel ugly.

It’s difficult to feel confident as a wife or mum when you can’t always accomplish the things you feel should be accomplished. I see all these people with their lives totally together, perfect homes and home cooked meals every day. Some days my tribe are lucky if there is a quickly made spaghetti Bolognese for tea, never mind a full roast dinner and homemade pudding!. We are currently in the middle of mock exam season, meaning the teenager is in revision mode. When I say the teenager is in revision mode what I mean is I am in revision mode and moan at him everyday to do some revision. Some days its an either or situation. Help the teenager revise or mop my floors. Obviously I help the teenager because lets be honest if I don’t do it he won’t.

The truth is having to choose one or the other makes me feel like a failure and I hate feeling like that. I hate not being the same person I was 7 years ago, I hate not feeling good enough and I hate feeling poorly all the time. The mental side effects of epilepsy are probably the hardest to live with.

So there we go, living with a chronic condition is difficult, both mentally and physically. It is hard to understand and even harder to live with. Equally, it is difficult to talk about, but the only way to help people understand is to talk about it. So there you go, this is me and this is my life, the good, the bad and definitely the ugly.