Today I am very honoured to have a guest blog post from http://rosewinelover.com/
Thank-for sharing your experiences!
First of all, I would like to thank Epilepsy Me And Neurology for inviting me to guest blog here. This has added a whole new aspect to my line of “work” – to advocate for epilepsy from my living room, reaching a target audience all over the world.
So, who am I? Allow me to introduce myself…
My name is Gemma. I’m a thirty-nine year old housewife, married to a wonderful man who I have been with for five years now. I have a profoundly autistic son from a previous marriage, who lives with a foster family because I am not strong enough – physically or mentally – to be able to handle his behaviours without significant harm coming to others and myself. I do love him fiercly though, and so my husband and I visit him as often as we can.
I have a great many hobbies and interests. I like to sew, read, garden and make preserves/relishes. I am a keen bird watcher, writer and ukulele player. I enjoy cooking shows (River Cottage, Jamie Oliver, Hell’s Kitchen etc.) and I live, sleep and breathe Doctor Who – although, obviously, there are many other shows I enjoy! After a long period of enforced inactivity (something which I am sure I will be blogging about another time) I have taken up walking recently, and I plan to take that up to jogging in time. I live, laugh, learn and love to the best of my ability and with all my heart and soul.
I also have severe generalised epilepsy, and this is why I was invited to blog here. To tell my story; to educate; to offer support.
I was tentatively diagnosed in my mid-twenties, when I began to suffer from blackouts and apparent fainting spells. Naturally this was a worry – especially as I was alone with an autistic toddler. The medication I was prescribed (named, at the time, Tegretol Retard – the name was recently changed for what I believe to be obvious reasons) did nothing to help and even made things worse. Eventually I was forced to admit that I was probably a danger to my son, who was already vulnerable enough, and his respite carer became his foster carer.
I was still able to be a productive member of a workforce, however – until seven years ago when I began spending more time recovering from seizures than I spent at work. I knew my days of gainful employment were over when I needed time off from my last job and never went back. It was gut-wrenching, as I had wanted to train to become a staff nurse in the footsteps of my grandmother, but I could no longer trust myself to be around the frail and elderly.
For years I sat around feeling sorry for myself as one thing after another that I used to love doing was stripped away from me: cycling; swimming; riding on the back of motorbikes; going to the cinema; travelling alone; catching a bus and ambling around the town centre. I felt as though I had failed at life.
Then, four years ago, I joined Epilepsy Action and began to feel less alone. In the magazine I can read inspirational tales from individuals who – like myself – are unable to work, but still manage to achieve incredible things. I have read about mountain climbers, marathon runners, swimmers, divers… all of whom trained fiercely to be able to achieve these amazing feats just one time, in aid of Epilepsy Action. I felt both humbled and inspired by these people who had fought through their epilepsy and achieved just one incredible thing.
Due to certain medications and their detrimental (to me) side-effects I was – and still am – physically challenged, but last year I came to a decision:
I was due to marry my husband in May. I was not going to rely on my walking stick and I was going to ask for donations to Epilepsy Action in lieu of gifts.
On the big day I was still recovering from a broken toe (incurred during an abscence seizure whilst walking down the stairs) but I did it anyway. Head held high with my bridesmaid gently supporting me, my husband and I exchanged promises in front of a small group of family and friends, and our wedding reception raised £90 for the charity.
I told my story briefly on the charity’s online “achievements” page and thought nothing more of it – until the following week, when I recieved a phone call inviting me to be part of a film about epilepsy which was to be shown at the Paralympics. Two days later I was sat in my garden on a beautiful sunny day, being filmed for something that thousands of paralympic atheletes were going to see. Atheletes from all around the world, no less!
This recognition spurred me on to continue blogging about living with epilepsy, and to become a Media Volunteeer for Epilepsy Action. I use Twitter to keep in touch with the charity and to meet other members, and I have also joined the fight against the Government’s decision to remove disability benefits from certain groups of people. I’m safe because my disability is neurological and is never going away, but I have many friends who have lost their ESA and DLA and who need that money desperately. I am educating and fighting from my little perch on the sofa; I am still a valuable asset to society in spite of being unable to work, and this means the world to me – knowing that I am not on life’s scrapheap as I initially feared.
Gemma Wright is an enthusiastic blogger who lives with her husband in south-east England. Also a Media Volunteer for Epilepsy Action (UK) who is keen to speak out on the subject, she can be contacted via her blog or via email at gemma at rpdom dot net.