I have to write tonight, it’s not all of what I want to write but it’s enough to clear my head I hope….
People say I’m strong but I’m not. I act it because I don’t want people to see the real me and what the real me has to deal with every day…. I mean if I complained about every pain and everytime I had a seizure or felt auras I would never stop moaning and I couldn’t bare to be one of “those people”.
I love life most the time, I love the wind in my hair the sun on my face, the sound of the seaside and the smell of fresh rain and the song of the morning birds.
I appreciate every moment when good things are happening.
I miss the freedom of being able to go out alone, having a job, going down the road alone to post a letter. I miss shutting myself away in my room with incense and quiet music without being disturbed every 2 mins checking I’m conscious.
I miss being alone and being able to talk to the real me when there is no one to influence my decision or thoughts. I wonder what I would be like now if I myself could actually have time to figure out who me is.
I would do anything to walk round the park alone for half hour. Watching the world go by. I would do anything to go back to work, amongst the patients I love to help, the staff I miss as friends.
Yet life is life and I can’t change any of the above. I can however change how people react towards me and that is the biggest challenge I will face in my life.
Know and remember what you say to others can make a huge impact upon them… It may just be a funny look or a remark or it maybe that you totally step out of line however if you think before you speak then your find life a lot nicer because your have more “real” friends for it. Don’t ever be that idiot who upsets everyone around them and ends up with no “real” friends but just people who are there because they don’t really have anywhere else to go.
I look around at other people and watch with questions, who are they?, what type of family do they come from?, what are their friends like? what job do they do? so many more. Sometimes I watch and wish I had that life – i see children with their fathers, I see pre teens going down town in their little groups for the first time, I see adolescents sitting outside in the pub garden having a pint/ drink and enjoying the sunshine. I see young adults at work or doing the amazing things the youth do. I then look at myself. I can’t say a lot there.
Then I look around my life rather that at it. I have a mum that loves me, a wonderful cat and lots and lots of “real” amazing friends and we all stick together. They are all there for me as i am for them and are totally amazing. Life is not measured by how many friends you have around you but by the friends who stick by you through thick and thin. Life is not measured in the crazy things you do in life but your dreams, hopes, desires and the journey. Life is amazing – it doesn’t matter what pace you take it at. fast or slow its still a journey.
I hate being told that I’m overdoing it.. I know my body and I’m the judge of that. I will do a little more every day in my own little way if I can to build myself up otherwise I will never be strong enough to truly fight.
This year is the fight of my life. I’m praying the London tests will mean surgery and a way out of this life. It’s not often you hear someone will for brain surgery but I do. I want this beast cut out or killed or whatever they can do to it to give me a bit of me back.
One day my time will come. Wether I win or loose it’s the way the battle was fought that counts.
I choose to fight it with a smile. If anyone tells me I can’t do something or I should stop cos I’m overdoing it, it makes me even more determined to prove them wrong.
Life is not measured by the breaths you take, but by the times it takes your breath away