How epilepsy makes me feel

It has been a rough couple of weeks in Jade world. The past two weeks have included seizures, bruises, emotional and physical pain, a rubbish teaching week and plenty of tears. The past two weeks have been HARD. They have taken a toll on not only my physical health but also my emotional and mental health.  

I am a pretty happy, positive person. I think being positive is just in my nature and even on the days when I don’t feel particularly positive or when life doesn’t seem awfully sunny I always try to have a “glass half full” perspective on things. I put my lipstick on, slap a smile on my face and get on with life. Fake it till you make it and all that. These past two weeks, however, my glass has not been half full, it's been empty. Infact, it's been that empty dust has begun to gather in it, a bit like the vase of sweet wrappers my nanna biscuit kept on top of her kitchen cabinet for about 20 years. When we took that bad boy down, I thought it was snowing. The amount of dust was asthma inducing, my glass is following the same lines. These past few weeks I have felt like I have nothing left in me. No energy, no positivity, nothing left to give. Just empty.  

There is a significant link between epilepsy and mental health difficulties including anxiety and depression. Seizures themselves can make you feel anxious and experience a low mood. I think most people with epilepsy will often feel anxious about the possibility of having a seizure. The brains natural reaction to having a seizure is to create feelings of anxiety and low mood while it tries to stabalise itself. Feeling emotional is a common side effect of seizures. I have cried my eyes out twice this week after having seizures, (just ask poor Alison at work who ended up with makeup marks on her scarf when she gave me a hug after a seizure) but I have also cried without having a seizure. I have cried a lot over the past 14 days.  

The reality is epilepsy has a huge impact on my emotional health. Losing your independence and living in constant fear of a seizure damages your emotional and mental health. Epilepsy has me in its grasp and there is no way out. Sometimes the grip is loosened, and I start to believe I can wiggle my way out, that I can get a “normal” life back, then it tightens its grip again and I am pulled back into the cloudy, depressing fog epilepsy is. It covers the sun and drains you of your energy and your hope until you feel like giving up.  

I have felt like giving up recently. I have felt the effects of epilepsy more strongly than I have in a long time. I have felt drained, I have felt like all my best efforts are not good enough and I have been doubting my own abilities as a teacher. I have been consumed with doubts and have had a constant fear my epilepsy is somehow stopping me getting where I want to go professionally. I have felt the kind of loneliness that only someone with epilepsy would ever be able to understand. It is almost impossible to explain how epilepsy makes me feel to others, people don’t understand how my epilepsy makes me work differently, how I have to adapt what I am doing each day according to my epilepsy and whether I am having a good day or not. I have felt ashamed that I can’t control my own brain. I have felt so much anger these past two weeks, anger at myself for not being strong enough to get control over my own brain and anger at the medication I am taking for making me ugly. My heart has been longing for my dad in a way that it has not done since he passed away and it has been hard to hold the tears back at times.  I feel like I have given my all and it has just not been good enough.  

That is the reality of epilepsy. When we take away all the epilepsy awareness talks, the positivity about being able to overcome any challenges epilepsy presents and the lipstick, epilepsy makes me feel pretty crap.