Hi My name in Andrew, I’m 37 and was diagnosed with epilepsy 10 years ago now, after suffering with what we now know to have been seizures for several years prior to this. I also have an inoperable brain tumour but fortunately seems stable and is a type that rarely grows and is non cancerous. At present I am just trying to improve my life the best I can for the sake of me and my family. Continual drug changes, lack of support in areas I felt I’ve needed it the most and the seizure frequency itself only getting greater has taken its toll. Exploring different platforms which were previously abandoned as one thing I got told by my healthcare team got contradicted by different organisations and charities, naturally I felt it best to listen to my primary healthcare team.
I’ve learnt a lot about epilepsy in the last decade but not too much on how best to manage it or myself so want to try again but use places like this to help me. I’m unsure if it’s only more recently that I’ve realised what I think is the severity of my situation and how I can possibly do something to better myself and my life. I’ve not worked for around 9 years now, when I finally accepted the doctors advice and gave up work (my business) and moved back to the other end of the country with my parents ‘just while we got things under control’
I do think I’ve also worked myself into a corner with fatigue by doing less and less as time’s gone on which is something I plan to work on and beat over time.
On a positive note I’ve some great parents who do almost everything for me who I live with and have even got my own bedroom with sofa and wetroom to give me some space of my own. I’ve also a lovely sister with husband and 2 little boys who I treasure greatly, they recently moved to just around the corner which is nice.
Reading back over this I sound very depressed which strangely despite many assessments have been told I am neither depressed, stressed or anxious.
I know I am very frustrated at life and how I am unable to do things I used to, I was always a very active and hardworking person and am now someone who sits around most of the time doing nothing.
