By far and I mean FAR the biggest challenge I face is a mental and emotional one. Something Doctors totally fail to realise. It is not the pain, not the ‘conditions’ themselves. The diagnoses: Two slipped discs, one herniated disc (That’s 3 prolapses folks!), sciatica, juvenile myclonic epilepsy and neuralgia might be the root cause of my challenge but they are by no means the worst of it.
I read through my blog, again and again. I count every ‘like’. I think of every friend and relative who has visited me, called me. I look at every picture. I scoure the web for resources and positive stories. I look out of the window and try to see the glory in the forget-me-notts and the blue-tits nesting. I save every message of love and support. I tell my husband every bit of positivity I can find. Yet I’m still choked up, I’m full of exhausted tears.
I am only 28years old and yet looking after me was recently likened to someone who is 82! Over the last few months the life I have known has steadily disappeared before my eyes. ‘Managing epilepsy’ for so long has meant that perhaps I am closer to ‘the edge’ than others. My spinal injury seems like the final straw. WHY me? I think. Have I not done enough, handled enough, am I not enough?!
Ultimately this is why I can never totally believe in the Christian God. I believe in energy, in nature, in Gaia and the earth goddesses. Nature is cruel and hard and real. Natures energy passes from one thing to another, it shows no mercy and favours no one nor anything. It is a higher power than I, worthy of fear and worship. I stand humbled at the alter of Gaia not of Jesus.
I have always loved being a super busy active person. Previously I never let anything stop me. I have always been social, loved meeting new people and creating community events wherever I’ve lived. As I can’t drive because of Epilepsy I have always walked everywhere. Now I can’t do that.
Bashing the keyboard hard today feels good. Take it out on the page, show people what problems with my spine really mean. To not be able to go anywhere has been one of the hardest things that has ever happened to me. I can’t pop over and see friends, I can’t organise anything, I can’t go to a cinema, salon, restaurant, park, I can’t go on holiday, I can’t go anywhere new in-case I can’t lie down, I can’t go on buses, trains, aeroplanes…I can rhyme! I am totally reliant on other people to visit me, to take me to appointments. My darkest fear is that this injury is going to prevent me from being able to have and care for children…
When I was diagnosed with epilepsy I remember thinking I should set a life goal. It was this: To find a loving husband and have healthy children and be able to make enough to support ourseleves independently, healthily forever. That is still it. That is all I want, all I have ever wanted. I have the husband bit, is it greedy to want the rest?
I feel that I am becoming a burden, something merely on people’s ‘to-do’ list, I can’t bear the thought that I can’t go and meet them or help them out. That is so painful a thought it actually burns my mind but I want to write down. Following this I also want to take a minute to refer people back to my blog where I wrote about how to not say the wrong thing.
I know these things are meant with love, but they are the wrong things to say. I got a wonderful email today all it said was “you are amazing. xxxx” It was the perfect thing to say and made my day. Thank you.
My husband just appeared with a new Swiss ball for me. WOWNESS I ACTUALLY SAT ON IT! IT HELPED. He is a mind-reading hero. I am so blessed. Feel so much better writing this all down. I can breathe again. Off for a picnic in the garden which we’re going to pretend is the beach. Dream on. Choose Happiness. Choose Real Friends. Choose Love, One Love.