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of everyone affected by epilepsy

 

Julie Herbert

I had a grand marl fit about 15 years ago. At the time I worked night's as a staff nurse and suffered more and more migraines but out it down to the work. . Anyway the MIR scan showed a benign tumour at the front left upper lobe . After it was removed it took years to ' recover' which robbed my youngest daughter of her carefree childhood because I had lost so much memory and needed so much care to get back on track. There was loads of therapy over the years and the keppra and lamotrigine combination worked well once I hot used yo the horrible side effects, I was determined to beat it lol. It cost me my career and my ' normal' self was lost forever . Somehow I had to learn to accept this new me ???? Years later after special driving lessons and no fits I was able to drive which made my life seem more 'normal' but somehow it was too 'unreal' my confidence was rock bottom and always worried 'what if I have a fit '. Relationships are virtually a nogo coz I'm too complicated and unpredictable, now happier in my own space its easier because being around non epileptic people is hard work!!! Sometimes I catch a certain look' from some people too....maybe they are feeling awkward for me but its hard not to feel vulnerable . So now I'm 60 my PIP benefit has been cut in half on my last assessment because epokepsy anc brain damsge are not assessed. If you can stand, lift your arms etc you are fit to work and ESA are trying to re mould me at the Job Centre although the young lady on my last interview informed me ' well you have some basic skills already! ' after I explained my past career as an RGN for 25 years, early retirement came hard below the belt, probably I will end up cleaning the floors as a domestic somewhere ...... Now recently I chose to stop driving when I clipped my passenger side mirror on another car , That shattered any confidence left plus for safety, couldnt live with myself if i caused an accident etc.Still waiting for my latest MRI lucky to get one too at my age but the Neurological Professors are checking for regrowth. All these years have been a daily battle to cope with strange sensations in my brain , auras , sounds,irrelevant thoughts to what I'm doing or feeling or experiencing. Mostly only a few seconds without losing consciousness, days vary some better some are worse so i stay in alone to be safe and/or don't need to explain myself to people ! It's all so trying . So its a comfort in a way to read other people's stories we are all different and trying to find our way on this unexplainable path in our lives, Be safe be well and try to LOVE yourselves x

Julie Herbert
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