Epilepsy and Fear…

I don’t feel good. I’m nervous and scared with no real reason. The slightest bit of negativity that enters my life sends me into a spiral of self-doubt, self-hatred, loneliness and depression. It feels like the world hates me and I cry for virtually no reason. It sucks. I know the EEG next week is weighing heavily on my mind and I suspect that’s where it begins. Where it will end, I have no idea. This is what epilepsy does to me sometimes.

My thought process is broken at the moment. I can’t focus and I feel anxious. One thought enters my mind, it could be anything from the mundane to the meaning of life, but it pingpongs in my head. It feels like I’m chasing the thought around my mind and I just never know where the thought is going and if I can catch it. It fades and is replaced by another thought, but again I can’t keep it in my head in one place. Anxiety. The feeling of loss of control. I get upset and fearful. The more upset and fearful I become the faster the thoughts bounce around and the less clear and focussed they become. Work becomes harder because I struggle to stick to a process or plan I’ve made for myself. Tasks requested by others aren’t so much of an issue because they come encapsulated with a start point, an end point and usually a pretty standard process in between. Muscle memory, if you like, takes over and I can perform.

I’m questioning my life. Not life itself, but my life. What I’ve done, what I’ve not done and how much of an impact fear has had on it. I’ve touched on this before. I don’t know how much having epilepsy has impacted my fear. I can’t always separate the two, yet sometimes it feels like they’re miles apart. What I do know is that fear begets anxiousness, anxiousness begets stress, stress begets sleep disturbance, sleep disturbance coupled with stress begets seizures, seizures beget fear. My circle of life. Fear and epilepsy are inextricably linked for me, but neither is wholly responsible for the other.

Having thoughts constantly bouncing around in my head is draining. These are not the creative thoughts that some people draw on to create the exceptional. I sometimes have those types of thoughts too, but they are easily distinguished from the ones going on now. The creative thoughts transform into the light, the bright, the uplifting, the humorous. These thoughts I can’t catch and they’re taking me over to the dark side of depression. I know it’s coming, it’s here already. It lies latent in me always and it’s me that gives it life. Depression is different for everybody too. Im a functioning depressive if you like. I’m the one with the smile and the laughter and the dead, numb feeling inside. I’m sure my eyes probably tell a different story, but I don’t know. I can’t meet my own eyes in the mirror when I’m depressed.

I bury my pain. I find it hard to articulate and I find it hard to talk about it. I think, by now, those of you who read this regularly, know I suffer with depression. I don’t find it hard to admit that I suffer with depression (any more), but I do struggle to use words to describe the feelings and the reasons under-pinning it. I don’t understand the feelings. I’ve talked to counsellors, doctors etc, but I find that whole process equally terrifying. It’s the feeling that I’m being be judged. That the way I recall incidents and feelings is incorrect and somehow untruthful. The feeling that someone is looking at me with pity. I feel sorry enough for myself without someone else adding in their pity to the mix. The biggest part of depression for me is the feeling of loneliness.

Loneliness is a huge subject for me. I’m happy in my own company, yet I sometimes struggle to be alone. And the times when I really need people around me are the times when I shut my friends out, refuse to socialise, cancel at the last minute and generally let people down. The guilt I feel about that is immense and yet I can’t seem to stop it. I guess it seems like I don’t care, like I’m being selfish and am way too wrapped up in myself to give a passing thought to what someone else may be going through. No-one has ever said those things to me, but I convince myself that’s what they’re thinking and I can hate myself even more because now I’ve given myself a tangible reason for self-hatred regardless of how tenuous that thought process is. Loneliness is awful. Scary. Locked in your own mind, with only the pingponging thoughts for company. It’s a dark place. Some don’t understand the loneliness, they think all you need to do is be in the company of others, but it doesn’t work like that for me.

My brain is my jailer and my refuge. It causes me to experience physical pain through the fits and it lets me through the door of darkness into the recesses of my mind where I’m running but never arriving. My brain takes me on a journey everyday. The mundane and the magnificent. The ordinary and the extraordinary. It tenderly nurtures my hopes and dreams and at the same time feeds my fears. My brain, my mind, my soul . All one. I can retreat into myself any time and frequently do. I can hide in myself and surround myself with the beauty, love and the knowledge that I so desperately want. I don’t talk about my dreams or my hopes. I’m scared that makes them less attainable. One belittling or sarcastic comment will send me scuttling to hide in the dark where my secrets are my own and my dreams can’t be scorned.

It’s hard to be friends with a person who suffers with such chronic self-doubt. It’s hard not to feel slighted. I understand that because of the people in my life who sufferer to a lesser or greater extent with feelings of depression. It’s often impossible to say the right thing because there is no right thing to say. It is what it is. Everyone has their own coping mechanisms, and some are still struggling to find theirs. I don’t take it personally when a friend I know is suffering retreats from me, I try to make sure they know I will still be here when they come out the other side. I hope my friends understand that part of me and aren’t harbouring some deep resentment because of the way I sometimes am. They couldn’t make me feel worse than the way I already do because of the weight of guilt pressing on my chest.

I had a skiing accident when I was 15. I didn’t feel fear at that time. The world was my oyster and I enjoyed it. That school trip to the Alps was a turning point for me in so many ways. The ski instructor said I shouldn’t have survived. I got back up and carried on though, oblivious to the switch that had just been flicked in my brain. There were a couple of bruises and a few aches, but in all honesty the whole group probably had that! The epilepsy gene was triggered though and the seeds of fear and self-doubt were unknowingly planted in the fertile mind of a teenage girl.

The dark is beckoning me. My anxiety is feeding the blackness. Feeding it makes it grow and that makes me more anxious. I picture the dark as being a super-shiny, viscous liquid that has a shape like a box, but has tendrils snaking from it that wind their way towards me, reaching out ready to pull me closer to that onyx box of blackness. The deeper the fear, the darker the box. Yet, there’s still glimmers of light. I’m going away for a few days next week and I know that the peace I find when I’m away is glorious. It’s a chance to hit the reset button hard, a chance to just be. A time when I really do enjoy the solitude.

Why can’t I feel that peace here, in my day-to-day life? Why do I do it to myself? Why don’t I just snap out of it? Why can’t I just snap out of it? I don’t know. If I did know, believe me I’d click my fingers and be free! It doesn’t work like that though. If you know someone who is suffering, please don’t ask them that question. They don’t know either. They wish they could. Just let them know you care and that you’ll be there whenever.

4 thoughts on “Epilepsy and Fear…

  1. Kirsty , I am captivated by your wrighting. It captures the essence of so many emotions, sensations and crystallises unanswered feelings I have experienced alone for 30 years. Be assured you are not alone on “Planet Epilepy” and please continue to share your insightful thoughts which are so skilfully written. You are an insperation and have my utter respect, despite never meeting you.May your peace come through your wrighting and the darkness be short. Keep shaking! 😉 Jim x


  2. Hi Kirsty,
    It’s like you’ve just plucked the thoughts and feelings about when I get depressed straight out my brain!!
    I’m glad I’m not the only one who suffers from depression as a result of the epilepsy. I thankfully have friends and family who understand and let me be when I need the quiet but they also know when to drag me (kicking and screaming) into the light. I hope the EEG goes as well…if you consider coming out looking like you’ve stuck your head in a vat of oil going well that is(it’s definitely not my best look!)!
    Take Care


    • You’re definitely not the only one! So good to hear that you have the support of your friends and family too. It’s good to have that network that can support without “knowing what’s best for you”…

      Thank you for your support, I’m glad to know that I’m not the only one who does not rock the post-EEG look!!

      Take care!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s