I like to try and educate people on how I feel, I find using crazy words and analogies the best way. If I was a fairy, I'd be sad because my wings didn't work or maybe because I ran out of fairy dust and the fairy dust shop had been taken over by judgemental weirdos (which is so much worse than judgemental non weirdos)! You can't buy fairy dust from a weirdo......nope, na.....not in this lifetime!
So, it's been a while. I forget where I left off and sometimes I find it hard to read my own posts. I had my 9th brain surgery in November 2015, whoop! It's been a very very long and hard slog this time, I still feel completely useless and exhausted. To be honest, at first I felt like I'd just had 9 surgeries all at once or like they all caught up with me. I have absolutely no idea how I managed to go to school and university just weeks after surgery when I was young. I was clearly insane and whilst many people said this I refused to listen! Determination is a good thing as long as you're not being completely irrational and crazy (which I clearly was).
As you probably understand now, my view of the world is completely different than to how most people view it. I can't be scared of brain surgery or dying or going insane or blind. I really want to share several things as I truly think most people have no idea of what is lurking in the shadows of the world so to speak. For example...
- Brain surgery is good not bad (though you or your parents/partner do have to sign a consent form saying it's ok if you die)
- Being blind in one eye is better than having double vision with two
- After being ill for 18 years and literally coming out pretty miraculous, having to use a crutch all the time now isn't the worst thing ever
- The DWP are the most unhelpful useless company in the history of the world, well maybe they aren't as bad as Hilter's crew but they're on their way there sadly
- People still don't get invisible illnesses, I swear that people think I just pop to hospital with a sore head and they (brain surgeons) just tap your head or give it a nudge or maybe they even flap about doing a get well dance! This is completely insane (and I'm the one who should be insane)! Honestly, if you think of brain surgery like you think of getting your ingrown toenail removed then I actually think you need to seek help! Just because I happen to have done this rather a lot does not mean there are no risks...honestly you want to get down to the neuro waiting room at the hospital......actually get down to the kids neuro, you will never ever question what people like myself go through ever again
Having an illness like mine leads to a very extreme life, one minute you're fine, the next you feel yourself drifting out of your body. The pain is horrific and if you're still with it, when you get your (hard core) morphine it's like you actually feel in a higher place. I'm not religious but when people discuss things like hearing a choir of angels (I'm aware this sounds completely ridiculous), it really is like that. Just so we're all aware, I haven't seen an angel or any weird shit as much as I would love to it's just never happened to me! Gutted......I'd love to be privy to seeing angels/dead loved ones etc! It would kind of be a rather exciting benefit to being very poorly. Mind you, on this note......I keep hearing horror stories of people waking up in surgery or of being aware of what's happening. This has never happened to me which I am rather pleased about. It's another of those good benefits. That would make me go insane I think! YUK!
So it's now 2017, another new year and another new me! I'm an ever-changing human constantly adapting to the trials of life. Life generally isn't built for people like me who constantly evolve. Think of a caterpillar, gets in his cocoon, turns in to a butterfly and off he flaps. What comes after the butterfly? Ghosts, floaty things, other excitement? There's definitely something else. Life is nothing more than a mad journey with lots of trial and error. We, as human beings, are constantly dipping our toes in the sea of life. Whilst this sounds a bit romantic and dreamy, getting your toes out and dramatically feeling the sea on it, it's not that dreamy! In fact the sea is scary, there's lots of doom, you've got to keep standing up, making sure your head is above water otherwise you'll be swept away. Before you know it you're screaming like a banshee and flapping your arms about like an angry goose. A big, fat, scary, ugly angry goose that if you ate it would taste foul and definitely turn you veggie.
When someone tells you 'you're lucky to be alive' it puts a huge amount of pressure on you. It's almost like being thankful for surgery because your alive. It's a crazy thing to deal with but everyday I have that thought, and every day I deal with it. I have to remember to think this when my brain hurts, my eyes hurt and my heart is thumping its unoriginal thump of mentalness. I feel old, not lucky to be alive, old and I hurt.
I'm sure a lot of you will now have some understanding of anxiety, depression and everything in between. Anxiety eats away at you. It grows with you. Whilst everyone (at first glance) moves on and lives, you feel stuck in a loop thats about as dramatic as an alien landing in a skeptics meeting at a 1970s social club.
As with every illness and trial in life, there are good things and bad things. Life is utterly mental. I don't ever expect everyone to understand how I feel. Yes, I am blunt. I call it 'being me', my family call it 'we love you however you are', surgeons call it 'brain surgery' and the general public call it 'being a bit of a bitch'.
It's taken such a long time for me to write again but what really spurred me on was one of these poster things you see on that social media thing people use!! It said "Ever wonder how your life would be if that one thing never happened".... Yes, I do, a lot. It still hurts every day, it makes me cry, it feels like a never ending ache that will never truly leave me. I used to be hopeful that it would go away, now I just feel like I have to learn to be ok with it. I'm trying. I will continue to try for the rest of my life I am sure.
The other massive influence behind me getting back to sharing is that I now have some new and very lovely friends which I have met at a choir. A group of totally random but genuinely amazing ladies who have made my week much better. This time last year I was in a very different place and I had just about had enough. I'm very aware of my lack of empathy sometimes. I'm not the most sympathetic but I view the world very differently to most of the population. The world is sadly not a fairytale but miracles do happen. I am still here once again, apparently for a reason but that hasn't surfaced yet. There is hope, people survive. Not everyone but people do.
Getting back to looking forward (ha) in to 2017....I'm taking more painkillers on a regular basis. I am preventing not treating. I will also take strong painkillers when I need them. I will not sit suffering with a bad head which would floor even the strongest human. I will not 'rattle' when I am old because I have been taking large amounts of medication since the age of 15. I will not feel guilty about getting concession rates for things, there have to be some perks of brain surgery (finally).
2017 will hopefully bring mostly nice things. It may not bring big plans with across sea journeying with extreme sports and drama but what it will bring will still be rewarding. My plans are not less than the old plans. Just different. I will exchange parachute jumping for several afternoon teas and take pride in being with my partner, helping him with his journey. I will watch my parents enjoy retirement and have fun. I have watched my dad come back from the depths of his awful disease thanks to the sun and to know they are actually living gives me a warm feeling. I will try harder to keep in touch with good friends and support them where I can. Lastly, I will continue to go to choir, I will share my story and I will keep writing my story.
From me to you, if you feel rock bottom, sing. Sing loud (even if you're tone deaf, just maybe not beside me) and sing your lovely little face off. You should do pilates too, it's all about the core and where would be without a core?!
Right, better get sorted, Matt will be home soon and I like to have the kettle on when he gets in. Either that or sing something dramatic from the front door as he takes his chainsaw out the van. Obviously I am reminding him how lucky I am to be alive and how lucky he is to have me. What a lucky little ducky!
Thanks for reading, wishing you a happy 2017 x
