Posted in Blog

Everybody Needs A Homie

Last Saturday I went on my first run in over half a year. I managed to do just over 4km and it was exhilarating.
The following Sunday my partner and I went on a 5km walk; it was fun, it was easy, and I even managed to keep up with his long-legged paces. (He did admit later on, that he had slowed his own pace down just a little for me to keep up!)

Lately my partner has been encouraging me to exercise more.
Last year I did a 10km run to raise money for Epilepsy Research UK. It was excruciatingly tough. I had the summer holidays to train whilst simultaneously having seizures almost everyday – sometimes I’d have seizures while I was running. However I pushed through it (I still remember one afternoon while out on a run I had a complex partial seizure in the park, threw up, and then carried on running) and I did it. I finished the run in just over an hour and a half.

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Only God knows how!
Perhaps having something physical to focus on was the perfect distraction to turn me away from my deteriorating health because as soon as the training stopped, so did the positivity.

Soon after the run, my Epilepsy team agreed that Lamotrigine wasn’t working and so we changed over to Oxcarbazepine. I barely had any strength- mentally and physically. Furthermore, the seizures didn’t stop. I was having complex partial seizures everyday – at times one after the other after the other. It’s funny because people always assume that medication is the answer to your prayers and if it’s not working then it’s something wrong with you.
People also assume that you’re just playing up to the illness for sympathy:

“Surely it’s not that bad”

“How can you STILL be tired?! It’s been almost a week!”

“Don’t you remember I told you what date we were going to that dinner? How many times do I need to remind you?”

“It’s just a short walk to Tesco, how can you be so lazy?”

I could go on and on about how much my Epilepsy annoys people but I don’t want to beg for sympathy here!

People also compare the ‘current you’ to the ‘you of the past’ and fail to understand that a chronic illness progressively changes you.

When it became clear that the Oxcarbazepine on the highest dose wasn’t working either, my Specialist Nurse sat me down to warn me that she was concerned that my Epilepsy was worse than originally thought. The reason for changing my medication in the first place was not only because it wasn’t working, but also because I had started to have new types of seizures. Now I was beginning to run out of options as well.

Feeding this kind of information back to your boyfriend is pretty scary. A million thoughts fly through your mind including: “he’s finally going to think I’m a freak…..” And “everybody eventually thinks about the future, children, etc etc. If I don’t even know what my future holds, what’s the point in being with somebody like me???” (not that we’re at that stage yet; it’s only been two years!)

Surprisingly he wasn’t phased. He’s concerned of course, however it doesn’t change the way he sees me. (I still can’t believe that even after the time he had to feed me while I was completely out of it post seizure and drooling all down myself he wasn’t freaked out.) To him, I’m not the chick with Epilepsy – I never have been and this confirmed that I never will be.

One morning last week, I was in the kitchen getting my lunch ready for work when I had a seizure; my boyfriend was drinking coffee in the front room, and he came in straightaway. When I’d recovered I asked him how he’d known to come in (I hadn’t been able to speak and wouldn’t have been able to ask for help). His reply: “you suddenly went quiet and I knew.”

He also understands and shares the things that are important to me: my writing, my Masters and most of all, running. Therefore, he pushes me but in a non- aggressive way. He’ll say “come on we’re going for a walk” in order to get me out of bed; he encourages me to try new things – I almost didn’t apply to University to do my Masters however where I saw a million obstacles, he saw none at all and encouraged me to go for it. After my first and second assignments, during which I’d been struggling with health and family issues and hadn’t done as well as I’d hoped, all I saw was despair and failure, whereas he saw the improvements and possibilities. Thanks to him, I didn’t quit, I persevered and improved remarkably in my third and latest assignment.

He is going to be embarrassed reading this but I need to tell you about him because people need to know that when somebody suffers from mental illness and a serious health condition, we don’t need people being mean to us and better yet, we don’t need to be pushed; we just need to be loved. We need someone to lean upon, but better yet we need somebody to help us stand on our own and conquer.

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Everybody needs a homie like mine by their side πŸ™‚

Author:

My body remains on the sidelines watching, while my mind roams around the room, taking in the world around her. I am a wallflower. There could be two reasons for this: It could be due to me being an introvert or just that I am a Cancerian! I’m Cece Alexandra and I am so honoured that you’ve been led to delve into my thoughts here in this blog! I would describe myself as a Wallflower which is why I use words to express my deepest – and sometimes darkest - thoughts. Words have always been my strongest method of expressing myself. Growing up I always wanted to be a writer, however life and circumstances chipped away at my confidence until there was nothing left. Without words, I could no longer express myself. I am also Epileptic. Since being diagnosed, I have realised that my deepest fear is the day I am finally on my deathbed, haunted by the overwhelming regret that I never achieved my God-given potential. This realisation forced me to take a step of faith and put myself out there. Yes it makes me vulnerable, however within the process I not only want to be an inspiration to myself; I want to be an inspiration to other women – to be whatever you want to be. Embrace the fear and doubt and utilise that as the fuel you need to push through! Life is for living to the fullest. Life is for loving, for living true to yourself and to the people around you. Life however, can also be crippling, dark and overwhelming. But you are not alone. This thought alone is what will help you get up from the ground.

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