LIVING WITH A CHRONIC CONDITION
The other day I had three consecutive seizures at my workplace. When I wrote this piece, I feel ashamed and embarrassed about having Epilepsy and slightly worried because of how I believe my colleagues might treat me after seeing me like that but you’ll be happy to know that I’m over that.
No one asks for a chronic condition. It just happens. You could be the healthiest, most active and fit individual and still somehow suffer from some chronic condition. It could be a heart condition or a neurological illness or simply a defect that you were born with.
I certainly never asked to have Epilepsy but I was officially diagnosed with it in 2019. My mother also had it. I pray that my children won’t develop it but chances are that one of them will and when they do, I do not want them to feel ashamed or embarrassed, hence I share this now. Epilepsy and seizures are weird. You have no control over your body. Sometimes when I’m in the midst of a seizure, I can make out voices, I can see people around me but I can’t speak and I can’t move. At times, I’ve found myself saying, “I’m here, help me” in my head but no one hears me. No one knows I’m screaming internally.
HOW IT STARTS
I get really bad headaches, then I feel the aura. An aura is a warning that you are probably going to have a seizure at any moment. When that happens, everything seems to be moving too fast and too slow all at the same time. It feels like an out of body experience, I feel a tingling sensation in my hands and then I become disorientated.
I only remember bits and pieces of the episode. I believe Epilepsy literally eats at your brain, little by little.
When I wake up from the seizure, and this is from what I can remember and from what people have told me, I don’t have feeling in my hands or sometimes my legs. From what the paramedic told me, this could be induced by anxiety.
I struggle to speak or articulate myself, as if my tongue is too heavy for my mouth and I don’t remember much. I was told during my epileptic episode, I asked for my mother.
My mother died in June of 2020. Grief doesn’t even take a break during seizures.
If I’m honest, I’ve been irresponsible with my health and especially with my Epilepsy diagnosis.
When I was diagnosed, I was in denial and I probably still am. I haven’t been consistent with my medication. I’ve made excuses of why I don’t want to take it; it’s too expensive, the side-effects are bad ect ect. It’s all nonsense.
The truth is, I don’t want to be the girl that has fits.
RIPPLE EFFECT
My condition doesn’t just affect me. It affects my husband when he has to get me off the floor or deal with my convulsions and sit with me until I come to. It affects my children when their mother can’t be a mother to them because she is passed out due to an epileptic episode.
Me not taking my medication is me being selfish.
I remember how it was for me when my own mother would have her episodes; I felt helpless and frustrated because I didn’t want to have to deal with it. It was as if I was my mother’s keeper and I blamed her and maybe that’s my issue, I blame myself for being ill and maybe I’m punishing myself by not taking my meds.
It makes no sense, I know.
A part of me resented my mother for her condition and the position it put me in but now I see, I’m doing the exact same thing to my own family.
I guess what I’m trying to say is that when you are sick or you suffer from some chronic condition, it is your responsibility to make sure you take care of yourself, if you are able to do so.
The cost of ill-health is too high and too much to bare.
Thank you so much for sharing this.