Betty’s Story

I’ll never forget that night, over eight years ago, waking up in bed and my body frozen. My heart was pounding, racing, hurting and the left side of my body was numb and heavy. I was unable to speak as lots of thoughts and images raced through my mind. I didn’t understand what was going on, I had no control over my body and as I was stricken with panic I kept thinking I’m too young to have a heart attack. Eventually, after a few minutes, it eased, my heart settled and my breathing calmed as I lay there confused and feeling lost and in time fell asleep again.

When I awoke in the morning, me being me, I dismissed what had happened and carried on living life. A few weeks later though it happened again, whilst driving, which scared me even more as random images and repeat thoughts flashed through my mind, my body temperature rose and I wasn’t sure if I was going to be sick or wet myself. This happened again and again on different occasions and started to really scare me so to the doctor’s I went. They didn’t know what was happening and sent me to have an EEG, ECG and CT scan but nothing abnormal showed up and no explanation could be given.

I continued on with my life unsure of what my body and mind were doing and eventually put all such occurrences down to panic attacks, knocking my confidence and causing me to feel as though I had no control over my mind, body and actions. This continued for a few years with these ‘panic attacks’ happening more and more, to the point of a several a week, sometimes a few a day until one summer’s afternoon in 2010. I sat in a friend’s kitchen and a whole new possibility opened up, epilepsy.

I disappeared into what I now know as a partial seizure whilst sorting out a pile of washing. As I came round again Hayley was repeatedly saying my name. I looked up at her and she asked if I was ok. ‘Yes’, I said. She explained how I was gone for a while, sat staring out of the window and when she was talking to me no response came. ‘Oh’, I replied, ‘Probably just daydreaming.’ She looked at me questioningly then asked a few questions to which I replied with details about all that happens to my mind, thoughts, body and actions when these occurrences happen and in turn Hayley suggested I had epilepsy. I didn’t understand the connection, it wasn’t what I thought epilepsy was about and she in turn shared loads of information from training she’d just had through her employment and it all just seemed to connect to what was happening to me.

To the doctor’s I returned, I had an EEG again and an MRI also, this time revealing information I had no concept of, an epidermoid tumour on my left front temporal lobe which went down through my brain and along my spinal cord to my third vertebrae. Shock is an extremely mild word to describe how I felt. I was overwhelmed and lost beyond comprehension as all that had been occurring over the past few years was finally explained but I also felt my life being taken away.

From this point many variations and changes happened in my life, starting with my driving license being taken away and with it a loss of independence and the need to move to make life more accessible. Then came the medicinal factor and trying out a range of epilepsy medications, 7 different types, all coming with varying side effects such as memory and concentration reduction, weight gain, weight loss, acne, mood changes and fatigue yet none of them assisted with my epilepsy as my body always built up a tolerance to them. Over the following two years my seizure occurrence and strength increased and I was having several a day, up to twenty and more, and in my sleep also. My energy levels were dropping along with my confidence and passions causing me to struggle to maintain my employed work and to keep my hobbies and interests alive.

Then, early 2012, the Neurosurgeon I had check-ups with, on seeing the depletion and negative affect epilepsy was having on my life, offered me the opportunity of brain surgery to which I repeatedly replied ‘yes, yes please.’ Well, surgery took place October 2012, and I was smiling and giggling with excitement as I went into the operating theatre. The idea of any reduction in my epilepsy, even just a few seizures a week rather than the high amount I was having every day, brought me visions of absolute happiness. The anaesthetic kicked in and after 7 hours of surgery, involving removing my left temporal lobe and as much of my tumour as possible down through my brain and to the top of my spine, I started to come round, repeatedly saying ‘thank you, thank you, my head hurts but thank you.’ I was in intensive care for a few hours while my body settled and regained balance as I filtered in and out of consciousness. I remember random bits of conversations with nurses, my parents and friend, Samantha, involving giggles and smiles and late that night I was taken to the main neurosurgery ward for my post-op recovery. There I remained for five days as my energy levels returned and what proved even more exciting, my seizures had stopped!!!

In the days and weeks that followed my friends and family repeatedly told me how my eyes sparkled again, my passion was back, Betty had returned and oh boy did I feel it!! During my recovery I slept lots and needed days of rest but those hours I was awake I was doing whatever I possibly could, whether it be writing, taking photos, coming up with ideas and plans, I’d be doing something. Throughout the healing process my energy levels were increasing and I was finding myself again, I was rediscovering life and wanting to live it!

For 7 months I was seizure free and during that time I did many things to raise awareness and support for those with epilepsy for and with, Epilepsy Action, including shaving my hair off, a presentation to 100 people about my life with epilepsy, an art therapy day, fundraising gig and more, all whilst working. All of this I had never envisioned doing. I certainly had my confidence and drive back!! When my epilepsy started again my old fears came alive in me but I have refused to let them take over, if anything I’m doing even more again and extremely grateful that they only tend to occur every few weeks, not every few hours as they once did.

Since their return I have proven unbeaten by them as I now work full-time, volunteer for two charities, Epilepsy Action and Orca Surf (enabling those with disabilities learn to surf), I have been on BBC news and in regional newspapers to raise further awareness of epilepsy and the support out there, assisted in setting up surf days for people with and effected by epilepsy, completed a fundraising cycle from London to Paris, continued with my photography and writing practice at different stages, considering doing my teacher training and I’m now currently training to run a half marathon.

I love life and I’m living it!! ❤

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