It's been over a year since I last blogged. It's been over a year since I felt like me (again) though I am starting to feel back in the world, understanding what I am doing, where I'm going and sort of 'getting it'. Though who ever really gets it?! If you do though, I take my hat off to you. I'm not wearing a hat, I'm not really a hat person...
I don't quite know how to begin this anymore, I don't know how to get across what I want to say. I have the words but I think a lot of the time my words are the 'wrong' words. The words quite a lot of the time, no one really wants to hear. Most of the time, they aren't nice words, but what I experience in life isn't nice. You can't say brain injury in a positive way, you could say it out loud in a nice voice, a french accent even. It's still not nice. There isn't anything nice about brain injury. This is the problem with the brain, it's really just far too complicated for any human to understand. It's a massive pain in the ass and it's always an uphill run in an inflatable Sumo costume. In the last year I was starting to lose my way again, like it just got really foggy or my terrible real life lack of sense of direction is also in my head! Half the time I feel like I've no idea what's going on, what I'm fighting for or why the bloody triangle won't fit in the circle hole! I mean for crying out loud, how dare you triangle, how dare you have 3 corners and not fit in to a 4 cornered box.......aah, the want to fit in a box, the want to be generic, the want for the removal of all the dodgy bits that don't work. What a luxury that would be. You see when you don't fit in a box (I know this is controversial, I'm aware most 'normal' people want out the box, not me!), you want nothing more. I suppose you always want what you can't have...and just to be clear I would LOVE a fully working brain.
Normally I find writing easy, like I just start and before I know it I've written pages and pages. This isn't happening at the minute. My head is heavy and my heart feels heavy too. Whilst I know how lucky I am, I certainly don't feel it. Especially not when I've been awake half the night and have had to take the strong painkillers. I don't feel lucky in the slightest. In fact I feel sad and pissed off. I'm not even sure I should publish this, I probably won't, but maybe that's why I should....
Some days are harder than others, most of all the days when I've had to take max painkillers. I try not to think of the future anymore, just one day to the next. That's enough for me to think about. Don't get me wrong, I would so love to have plans for the future but having plans means they can get cancelled when something goes wrong and the disappointment of that is far worse than not having a life plan!
I'm beginning to get used to not working, though it's an awful thing. Luckily there are things I can do and I am doing as much of them as possible. I'm singing more than I have in a long time which is great. I am sure I have mentioned in the past what being in a choir can do for a person. We've moved on from a choir, we're a family so to speak. There are several members of the choir whom I am now lucky enough to call good friends. In fact a couple of them I kind of feel I was destined to be mates with! Eeeuugh, yes, I just said destined! A bit gushy but so very true! This year, as a choir, we will be doing our first festival gig. I imagine our friendships will grow after that, festival fields do that sort of thing. It will also be the first time I've performed at a festival which will be a different experience for me. I'm sure it'll be fun to say the least! If you want to catch our festival debut, we will be at Lindisfarne Festie, the main stage, Friday 31st August at 3.30pm. I'm sure we will be amazingly wonderful, we're all pretty excited....
I want to finish this today with the reason why I felt I had to write today....a nice reason! So my Wednesday evenings are always filled with choir excitement. Yesterday was a lovely day, we sang outside and everyone seemed bright, strong and positive. Even me to some extent! I even ended up with a daisy crown - a bravery award from a fellow SHE (when I say SHE, I'm referring to a choir matey - we are Newcastle SHE Choir) as she had just found out about (briefly - we're supposed to be there to sing for an hour and a half, not enough time to go through my medical history! Mind you, is there ever a good/pleasant time to discuss the ins and outs of neurosurgery? I think not!!) my health problems! Then as I was leaving I somehow got in a conversation with another SHE about my head and one of the conditions I have, Hydrocephalus. She suggested if I have water on the brain, I should plant flowers there. As soon as she said it, I thought, 'ah man, bloody hell, wish I'd thought of that'! What a wonderful illness this would be if they could get rid of this excess CSF (brain juice) by planting a few flowers up there. How lovely. If only. Flowers for hair.....a constant flower crown....I can't wait to tell my surgeon that....
Life is hard, there are so many struggles. The worries that live inside you are some of the worst. I am full of worry gremlins, they never really go away but as an analogy, sometimes they're not the ones that got went and went evil. You have to keep fighting (or perhaps carry a hair dryer around so you can dry said wet gremlins) and trying to live. It's not going to be the ride you wanted but it's the one we have and so we must be brave and carry on (and not keep calm!).
Destiny always sounds like such a glamorous word to me and I'm sure to some of you it is. Me?! Well I'm just happy that I've gotten out of bed, done something (whatever that something maybe) and there's a massive high 5 each day I haven't needed a strong painkiller!
Be brave, be strong and be you.....
Until next time...or maybe I will see you in a field...x
Thursday, 26 April 2018
Tuesday, 10 January 2017
2017, new year, same story...
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
Wednesday, 2 December 2015
Dear World.....
It's been a while, sorry about that but it's simply due to the fact I haven't been well and when my head is in the midst of doing whatever it is it does, writing is pointless.
So, my head is sore, it's been much worse before but like people say, when you're younger, you bounce better! At 32 the bounce isn't really a bounce but more like a fall flat on your face in a cold custard and fish pie....
There's been something going on anyway, whether it's a small bleed or a slight blockage, something has kicked off in my head! It's remarkable how I can distinguish between a standard daily headache, to 'there's something going on' headache and a 'all hell is breaking loose and I need brain surgery' headache but this is the one thing I am fluently brilliant at! So this time, my feeling is that my ventricles are enlarged which means there has been a blockage in my brain drain however (and a massive hoorah) it has flushed itself through and I've avoided surgery once more!
It's been a pretty tiring 4/5 weeks, lots of painkillers, little sleep and a miserable face....it's these times when I forget how to smile. There's always a gaggle of people banging on about this that and the other and I prefer to hibernate than have to give most of the human race a reality check. It's a heavy burden I carry around, trying not to think too much about life with lots of pain medication....it's a 'pain vs becoming dependent on painkillers' debate...except there's no debate. It's more a get over it, deal with it and shut up debate!
Anyway once again, I've made it through (still with a sore head) and I'm back in action so to speak.
Now for the difficult part........I've been ill just over 17 years now and I've finally hit that wall people preach about! In fact, I feel like I've hit three walls whilst being in the middle of an illegal rave where thousands of people dance over me right before I fall in to a pit with some hardcore scary gorillas ready for a fight. Yep, that dramatic! All that determination I had when I was younger, the same determination that got me through GCSE's, A Levels, a Degree and a Masters Degree has now oozed out of my rather tired body. I hate to say it but all those people (doctors/friends/family) who tried to get me to take time out, I owe you all massive apologies....if only I could rewind, I would so take the time out. I honestly feel if I did that, I would not feel the way I do right now. Hindsight is a wonderful thing......
Well, as I can't turn back the hands of time, or time travel, I've made my decisions and so I should be proud. If only it was that easy!
It seems in this world nothing is easy, it's like everyone has completely lost the plot. It's a massive pit of doom. I mean, is anyone actually super happy? How can you be when people are in pain and people are running from war.....idiots can buy guns and drive cars.....I mean, honestly, people think I'm slightly mental! Well world, more fool you, you're completely ridiculous!
So, as I sit here writing this, I have taken the decision to stand back, observe and keep calm and quiet. It's either that or explode in to tiny pieces, and I'm not talking little pieces of joy. I don't feel brave anymore, in fact I feel weak, pathetic and lost. I'm not ashamed to say that either. It says something when I would probably feel more comfortable having brain surgery and taking time out afterwards than just taking the time out because my head is mashed. I have never wanted to feel like a failure or to feel disabled or as the ticky box people like to call it chronically diseased. I am though, well not diseased but ill for life. I know some of you people out there seem to struggle with those of us who are incredibly ill but not visibly ill, I'll make sure I get a badge soon. People love grouping and stereotyping. Unfortunately, you'd struggle to fit me in one box, I'd need to be split three ways....lucky me!
Mentally, my head feels, well...mental! Half the time I don't know if I'm coming or going, what I'm doing or what the hell is going on. My mind is consumed with what feels like the biggest disaster movie of all time. I'm talking somewhere between Independence Day, The War of the World and Planet of the Apes. Now that is some crazy shit going down! Welcome to my world. If only there was a pill that could sort that out. It's the whole box thing again....elements from several things create my world!
On another note, there are so so many articles and comments circulating via multiple social networks about the NHS. I almost feel I should be apologising for taking so much of their time and money. This week I actually found out the cost of the rather small tube I have in my brain which keeps me alive....£20,000. Yes, you read correctly, £20,000 for a little bit of plastic! This is where we are going wrong!! It can't possibly cost £20,000 for a bit of silicone. Now that my friends, is completely ridiculous. So, in my 17 years of being ill I've had £140,000 worth of tubes, I haven't even bothered working out the costs of brain surgeons, anaesthetic, anaesthetists....the most well payed jobs going probably! I almost feel guilty and this is one of the problems with the world today. I'm sorry for using the NHS so much, it wasn't my fault though.....I didn't ride a motorbike without a helmet, or go joyriding or do anything to cause my illness. I blame life......sadly I can't sue life.
On suing life, wasn't there a film years ago about someone suing God? Now, I'm not religious and I do not want to offend anyone but if he was real, I'm pretty sure he would have a permanent queue of people waiting to punch him in the face. Any time I do have a discussion with those people in the world who do follow religions, I always get 'he made you ill because he knew how strong you were'. Well, take it from me, I could of done without the hassle to be perfectly honest. Surely there was another destiny for me? One where I just sat and made loads of money and had everything I ever wanted including several ponies, a couple of castles, an island....well I could go on, but I don't want to depress myself further! Eeeeh you have to laugh, if I didn't I'd spend 24 hours a day crying! I allow myself a maximum of 2 hours per day crying, any more and I'd cause flood damage in my house......and there will most definitely be issues with insurance if I'd caused the flood. I'd have to sue myself! Crazy times!
So, here's to all of us still trying to get through life. It's like some crazy playground without the play. I hope this makes you laugh, I like to make people laugh with my sarcastic and dry humour. I like the phrase 'dry humour'...it makes you think that there has to be something called 'wet humour'. For someone who's illness translates to 'water on the brain'...well it's just hilariously ironic.
Also on irony, when I got my flu jab this year, it was given to me by a nurse I'd never met before. Afterwards she said 'you've got incredibly thick skin'. I smirked. Thick skin, that's me! I can deal with brain surgery but anything else I'm like a quivering mess! Fun times in the life of me!
I hope all of my blog supporters are well and not crumbling in the world of madness, it has to get better! I'm trying my best to get a message to the aliens to come and pick a bunch of the loveliest people down here. I'll let you know if I hear anything.....
Just before I go, a little message to the world.......
Dear World,
Stop being utterly pathetic, where's your compassion, where's the love? You've let us all down, this makes me so sad. I feel heartbroken. More than heartbroken. It's all too much for me now, I just want to come out the other side where everything is nice, compassionate and warm. This won't happen and if it does it's probably too late for most of us but we can only hope that it's easier for future generations. It's either that or people will be emigrating to Mars or the Moon. These both seem like decent options at the minute. I'm not scared of aliens either, I bet they don't have guns or cars or scary gorillas. In fact, those 'little green men' are probably the most decent people in the world.....obviously I'd prefer them in pink, green just never has been my colour.
With kind regards best wishes
Laters
Nina (no kiss)
I'm going to leave you with the words of the very cool, sane and down with everything Coolio (laugh man, it's funny)...
As we walk down the road of our destiny
and the time comes to choose which it gonna be
the wide and crooked, or the straight and narrow
we got one voice to give and one life to live
stand up for something or lie down in your game
listen to the song that we sing
it's up to you to make it be
I guess I'll see you when you see me
I'll see you when you get there
if you ever get there
see you when you get there
I'll see you when you get there
if you ever get there
see you when you get there
https://youtu.be/tP1PXRiVoJw
Much love to you all....
N x
So, my head is sore, it's been much worse before but like people say, when you're younger, you bounce better! At 32 the bounce isn't really a bounce but more like a fall flat on your face in a cold custard and fish pie....
There's been something going on anyway, whether it's a small bleed or a slight blockage, something has kicked off in my head! It's remarkable how I can distinguish between a standard daily headache, to 'there's something going on' headache and a 'all hell is breaking loose and I need brain surgery' headache but this is the one thing I am fluently brilliant at! So this time, my feeling is that my ventricles are enlarged which means there has been a blockage in my brain drain however (and a massive hoorah) it has flushed itself through and I've avoided surgery once more!
It's been a pretty tiring 4/5 weeks, lots of painkillers, little sleep and a miserable face....it's these times when I forget how to smile. There's always a gaggle of people banging on about this that and the other and I prefer to hibernate than have to give most of the human race a reality check. It's a heavy burden I carry around, trying not to think too much about life with lots of pain medication....it's a 'pain vs becoming dependent on painkillers' debate...except there's no debate. It's more a get over it, deal with it and shut up debate!
Anyway once again, I've made it through (still with a sore head) and I'm back in action so to speak.
Now for the difficult part........I've been ill just over 17 years now and I've finally hit that wall people preach about! In fact, I feel like I've hit three walls whilst being in the middle of an illegal rave where thousands of people dance over me right before I fall in to a pit with some hardcore scary gorillas ready for a fight. Yep, that dramatic! All that determination I had when I was younger, the same determination that got me through GCSE's, A Levels, a Degree and a Masters Degree has now oozed out of my rather tired body. I hate to say it but all those people (doctors/friends/family) who tried to get me to take time out, I owe you all massive apologies....if only I could rewind, I would so take the time out. I honestly feel if I did that, I would not feel the way I do right now. Hindsight is a wonderful thing......
Well, as I can't turn back the hands of time, or time travel, I've made my decisions and so I should be proud. If only it was that easy!
It seems in this world nothing is easy, it's like everyone has completely lost the plot. It's a massive pit of doom. I mean, is anyone actually super happy? How can you be when people are in pain and people are running from war.....idiots can buy guns and drive cars.....I mean, honestly, people think I'm slightly mental! Well world, more fool you, you're completely ridiculous!
So, as I sit here writing this, I have taken the decision to stand back, observe and keep calm and quiet. It's either that or explode in to tiny pieces, and I'm not talking little pieces of joy. I don't feel brave anymore, in fact I feel weak, pathetic and lost. I'm not ashamed to say that either. It says something when I would probably feel more comfortable having brain surgery and taking time out afterwards than just taking the time out because my head is mashed. I have never wanted to feel like a failure or to feel disabled or as the ticky box people like to call it chronically diseased. I am though, well not diseased but ill for life. I know some of you people out there seem to struggle with those of us who are incredibly ill but not visibly ill, I'll make sure I get a badge soon. People love grouping and stereotyping. Unfortunately, you'd struggle to fit me in one box, I'd need to be split three ways....lucky me!
Mentally, my head feels, well...mental! Half the time I don't know if I'm coming or going, what I'm doing or what the hell is going on. My mind is consumed with what feels like the biggest disaster movie of all time. I'm talking somewhere between Independence Day, The War of the World and Planet of the Apes. Now that is some crazy shit going down! Welcome to my world. If only there was a pill that could sort that out. It's the whole box thing again....elements from several things create my world!
On another note, there are so so many articles and comments circulating via multiple social networks about the NHS. I almost feel I should be apologising for taking so much of their time and money. This week I actually found out the cost of the rather small tube I have in my brain which keeps me alive....£20,000. Yes, you read correctly, £20,000 for a little bit of plastic! This is where we are going wrong!! It can't possibly cost £20,000 for a bit of silicone. Now that my friends, is completely ridiculous. So, in my 17 years of being ill I've had £140,000 worth of tubes, I haven't even bothered working out the costs of brain surgeons, anaesthetic, anaesthetists....the most well payed jobs going probably! I almost feel guilty and this is one of the problems with the world today. I'm sorry for using the NHS so much, it wasn't my fault though.....I didn't ride a motorbike without a helmet, or go joyriding or do anything to cause my illness. I blame life......sadly I can't sue life.
On suing life, wasn't there a film years ago about someone suing God? Now, I'm not religious and I do not want to offend anyone but if he was real, I'm pretty sure he would have a permanent queue of people waiting to punch him in the face. Any time I do have a discussion with those people in the world who do follow religions, I always get 'he made you ill because he knew how strong you were'. Well, take it from me, I could of done without the hassle to be perfectly honest. Surely there was another destiny for me? One where I just sat and made loads of money and had everything I ever wanted including several ponies, a couple of castles, an island....well I could go on, but I don't want to depress myself further! Eeeeh you have to laugh, if I didn't I'd spend 24 hours a day crying! I allow myself a maximum of 2 hours per day crying, any more and I'd cause flood damage in my house......and there will most definitely be issues with insurance if I'd caused the flood. I'd have to sue myself! Crazy times!
So, here's to all of us still trying to get through life. It's like some crazy playground without the play. I hope this makes you laugh, I like to make people laugh with my sarcastic and dry humour. I like the phrase 'dry humour'...it makes you think that there has to be something called 'wet humour'. For someone who's illness translates to 'water on the brain'...well it's just hilariously ironic.
Also on irony, when I got my flu jab this year, it was given to me by a nurse I'd never met before. Afterwards she said 'you've got incredibly thick skin'. I smirked. Thick skin, that's me! I can deal with brain surgery but anything else I'm like a quivering mess! Fun times in the life of me!
I hope all of my blog supporters are well and not crumbling in the world of madness, it has to get better! I'm trying my best to get a message to the aliens to come and pick a bunch of the loveliest people down here. I'll let you know if I hear anything.....
Just before I go, a little message to the world.......
Dear World,
Stop being utterly pathetic, where's your compassion, where's the love? You've let us all down, this makes me so sad. I feel heartbroken. More than heartbroken. It's all too much for me now, I just want to come out the other side where everything is nice, compassionate and warm. This won't happen and if it does it's probably too late for most of us but we can only hope that it's easier for future generations. It's either that or people will be emigrating to Mars or the Moon. These both seem like decent options at the minute. I'm not scared of aliens either, I bet they don't have guns or cars or scary gorillas. In fact, those 'little green men' are probably the most decent people in the world.....obviously I'd prefer them in pink, green just never has been my colour.
Laters
Nina (no kiss)
I'm going to leave you with the words of the very cool, sane and down with everything Coolio (laugh man, it's funny)...
As we walk down the road of our destiny
and the time comes to choose which it gonna be
the wide and crooked, or the straight and narrow
we got one voice to give and one life to live
stand up for something or lie down in your game
listen to the song that we sing
it's up to you to make it be
I guess I'll see you when you see me
I'll see you when you get there
if you ever get there
see you when you get there
I'll see you when you get there
if you ever get there
see you when you get there
https://youtu.be/tP1PXRiVoJw
Much love to you all....
N x
Monday, 3 August 2015
Depression in Wonderland - it's not all smiles, cats and rabbits!
Every few years, I get a sudden feeling of utter dread....is it just me?? I think things like 'what am I doing?', 'where am I going?' and 'do I want to do that?'.....I hope it's not just me. I have so many big ideas that just exhaust me....I know I can't do them on my own, I don't have enough strength and this annoys me.
I know I'm not the only one who gets exhausted at thoughts of life and surely I can't be the only one who every now and then thinks the world is just too much.
When I began this blog I didn't really want it to focus on mental health or disability however, these things are such a big part of my life I feel I'm probably not doing myself many favours by wearing my happy costume most of the time. As I am getting older I feel more aware of people looking at me thinking 'how does she qualify for a concession bus pass?' and 'why is she taking so long to get down the stairs?'. I've recently had similar discussions with the DWP who've recently told me I've helped myself too much. I honestly feel the world would be nicer to me if I wore a patch over my blind eye and used my crutch full time. The answer to this conundrum is a) I'm not a pirate and there's no need to cover my 100% blind eye and b) I honestly feel people would look at me like I'm a liar. There's a problem here and it's not me! I am aware there are many people who opt to not have surgery for eye problems, the eye will become discoloured or the eye socket may shrink and so on....but because I demanded the eye hospital to blind it or else, I almost feel I have made life harder for myself.
I am well aware most people would feel nervous and anxious when agreeing to surgery however, I cannot see it in that way. For me, surgery is positive, it's there to save my life. As soon as I become scared, life will become more anxious.
I really want people to see why I am blunt, why I express strong opinions on health and other matters. So many people seem to see the world with Disney glasses, pop them on and we'll all skip around....now those are glasses I would wear....! Just to note, I wear glasses full time, so I'm not slagging off anyone who wears them!
This weekend I realised that in some of the activities and events I take part in, my life would be easier with a crutch. Even just doing the food shopping, when I bash in to someone on my blind side and they look at you like you're some kind of shoving terrorist. I'd rather not be looked at like that, it makes me sad. So, would life be easier if I played up my disability? One million percent yes! Every time someone gives me the evil eye, it makes me sad. As I get older and the vision in my good eye is becoming worse, it becomes more of a problem. So, moral of this story, if you happen to see me with my crutch, give me a high five!
Ok, so back to being a misery! I get sad....a lot. It's not easy fighting with yourself everyday, there's never a winner and I just knock myself out! Don't get me wrong, I love a good fight but fighting with yourself just isn't cool man!
Right, depression....anxiety, sadness, adjusting, living....all these things are hard work. Harder than any degree or occupation or climbing any mountain. To be honest with you all, it's not something I preach about. I don't think it's shame, I think it's more like I've had brain surgery, can anything else be that bad?! Well it can. For almost 17 years I have been under a psychiatrist. I've seen every type of mental health worker you could imagine. They don't give t-shirts out in the NHS but if they did I'd have them all, I could probably make a patchwork quilt to cover 100 people!
Life is hard. It's hard when you have no health worries but harder when you do. I've put up one hell of a fight in the past but like any boxer, when you get older, the fight gets harder! Depression and anxiety doesn't make you weak, it makes you stronger. When you're fighting daily and doing your best to achieve, I reckon you're as hard as a proper hard thing! These days, I've gotten over the fact I have limitations career wise because of illness, I don't see many positions for what I do being offered as part time. Don't get me wrong, it hurts, but I can't just spend day after day hurting can I? There are days where it hurts a lot, those are the days where I'll keep myself to myself and will stay at home. It's not giving in, just time to remind yourself it's ok and everything will work out fine.
As I get older, people naturally get on with different events in their lives. I would love my life not to be a massive drama however, it's not like my illness will ever go away (despite the DWP listing my condition as one that may improve - clearly there are some secrets about brain transplants myself and my neurosurgeons don't know about). Holidays are planned around hospitals and how much insurance will be. Having children involves 3 different consultants, none of which relate to babies. Life will always be one big (planned) drama! I kind of thought I was ok with this but then I hit 30 and panicked! Being ill is much easier up until you're 30...
I think having to plan everything so much has done two things...
1. I am a very good and thorough planner and event manager - it's put me in good stead for my career!
2. Made me regimental. I like things done the right way. I want to trust in karma and hope that one day it'll show up!
The latter of these points is the one I think has a negative effect on my life. Similar to the 'why me' question, it makes you feel like you're being punished and you want horrid things to all the not very nice people in the world. This statement is my downfall. Many people living with chronic illnesses feel angry, I am one of them. I'd like to think that one day I'll feel less angry, or to perhaps accept the anger and just get over it. I know I am not alone here, I know the people who love me have felt angry but they've managed to accept it and almost put it in a box.
To be honest I think that other people and what they think has a huge impact on how I feel. There are so many misconceptions about living with an invisible illness. There are many articles about this on the internet so I don't want to just repeat what other people say but it's worth a google if you can! Just to pick some of them out which strongly relate to how I feel and live....
1. If chronically ill people are enjoying themselves then they can't feel that bad.
Really??? Are people still saying this?? I'll stay in the house every day then eh?! It's madness this! Wise up man! I've done so many things with a splitting headache, doped up on strong painkillers! I've worked with lots of bands and at festivals with a headache that would floor most people.
2. You look fine, so probably are fine.
Dear the rest of the world,
Please don't make me shave my hair off so you can all see my scars and my lovely shunt, you'd all freak out and vomit. When you ask me if I'm ok and I say 'fine thanks'. I feel you'd like me to go through my medical info for the last 7 days. Do you want to know how many painkillers I've had that week or how much sleep I've had? I don't want to bore you with complicated medical information and neurological terms! Oh, and if I'm smiling, I'm being polite, I'm putting on a brave face, I'm not without pain or anxiety.
Yours,
Nina
3. You're drinking wine so you can't be that ill.
Now I know most of you get told not to drink alcohol when taking medication, you will struggle to find a brain surgeon who will say this. To be fair, I no longer drink huge amounts of alcohol, not because a doctor or consultant told me too though, but because at the age of 30 I realised I felt better off without it! I reckon most of you would feel that way, but I'm not preaching, do what you want! Please note though, there are some medications which you absolutely should not drink with! You can generally tell by the way the doctor says to you with a look of utter shock and disgust on their face!
4. I'm strong and brave.
I'm not. I don't have any choice. You get on with it or you don't. If you don't you see the hurt and pain in your loved ones faces. When you do, you get on with it.
5. Everything will be ok.
It won't, not unless I get that brain transplant which would obviously change who I am. Things may get easier, then they'll get harder and then they'll get easier and then they'll be harder again. Honestly there are more ups and downs in chronic illness than the yoyo of the best yoyo user in the world.
I've been so sad recently, I still am. I know I've done lots and should be proud of myself but sometimes I think this is part of the problem. I one million percent agree that you bounce back when you're younger. I felt like a ninja for many many years. I think within the past few months, the lack of bounce has been apparent. I'd almost say there's no bounce at all a lot of the time...kind of like throwing an egg on the floor....you just get a splat! I feel like a splat. A massive splat at that! I've had hard times before and I know I'll come out the other side, it's just harder now I'm older.
I'm coming back to the statement I say to myself regularly...'It's not brain surgery, look at what I've achieved as an ill person', that and 'I'm one of the luckiest people in the whole world'. What a big fat lucky duck I am!
Happy days keep dreams afloat!
Until next time people of the world!
N x
I know I'm not the only one who gets exhausted at thoughts of life and surely I can't be the only one who every now and then thinks the world is just too much.
When I began this blog I didn't really want it to focus on mental health or disability however, these things are such a big part of my life I feel I'm probably not doing myself many favours by wearing my happy costume most of the time. As I am getting older I feel more aware of people looking at me thinking 'how does she qualify for a concession bus pass?' and 'why is she taking so long to get down the stairs?'. I've recently had similar discussions with the DWP who've recently told me I've helped myself too much. I honestly feel the world would be nicer to me if I wore a patch over my blind eye and used my crutch full time. The answer to this conundrum is a) I'm not a pirate and there's no need to cover my 100% blind eye and b) I honestly feel people would look at me like I'm a liar. There's a problem here and it's not me! I am aware there are many people who opt to not have surgery for eye problems, the eye will become discoloured or the eye socket may shrink and so on....but because I demanded the eye hospital to blind it or else, I almost feel I have made life harder for myself.
I am well aware most people would feel nervous and anxious when agreeing to surgery however, I cannot see it in that way. For me, surgery is positive, it's there to save my life. As soon as I become scared, life will become more anxious.
I really want people to see why I am blunt, why I express strong opinions on health and other matters. So many people seem to see the world with Disney glasses, pop them on and we'll all skip around....now those are glasses I would wear....! Just to note, I wear glasses full time, so I'm not slagging off anyone who wears them!
This weekend I realised that in some of the activities and events I take part in, my life would be easier with a crutch. Even just doing the food shopping, when I bash in to someone on my blind side and they look at you like you're some kind of shoving terrorist. I'd rather not be looked at like that, it makes me sad. So, would life be easier if I played up my disability? One million percent yes! Every time someone gives me the evil eye, it makes me sad. As I get older and the vision in my good eye is becoming worse, it becomes more of a problem. So, moral of this story, if you happen to see me with my crutch, give me a high five!
Ok, so back to being a misery! I get sad....a lot. It's not easy fighting with yourself everyday, there's never a winner and I just knock myself out! Don't get me wrong, I love a good fight but fighting with yourself just isn't cool man!
Right, depression....anxiety, sadness, adjusting, living....all these things are hard work. Harder than any degree or occupation or climbing any mountain. To be honest with you all, it's not something I preach about. I don't think it's shame, I think it's more like I've had brain surgery, can anything else be that bad?! Well it can. For almost 17 years I have been under a psychiatrist. I've seen every type of mental health worker you could imagine. They don't give t-shirts out in the NHS but if they did I'd have them all, I could probably make a patchwork quilt to cover 100 people!
Life is hard. It's hard when you have no health worries but harder when you do. I've put up one hell of a fight in the past but like any boxer, when you get older, the fight gets harder! Depression and anxiety doesn't make you weak, it makes you stronger. When you're fighting daily and doing your best to achieve, I reckon you're as hard as a proper hard thing! These days, I've gotten over the fact I have limitations career wise because of illness, I don't see many positions for what I do being offered as part time. Don't get me wrong, it hurts, but I can't just spend day after day hurting can I? There are days where it hurts a lot, those are the days where I'll keep myself to myself and will stay at home. It's not giving in, just time to remind yourself it's ok and everything will work out fine.
As I get older, people naturally get on with different events in their lives. I would love my life not to be a massive drama however, it's not like my illness will ever go away (despite the DWP listing my condition as one that may improve - clearly there are some secrets about brain transplants myself and my neurosurgeons don't know about). Holidays are planned around hospitals and how much insurance will be. Having children involves 3 different consultants, none of which relate to babies. Life will always be one big (planned) drama! I kind of thought I was ok with this but then I hit 30 and panicked! Being ill is much easier up until you're 30...
I think having to plan everything so much has done two things...
1. I am a very good and thorough planner and event manager - it's put me in good stead for my career!
2. Made me regimental. I like things done the right way. I want to trust in karma and hope that one day it'll show up!
The latter of these points is the one I think has a negative effect on my life. Similar to the 'why me' question, it makes you feel like you're being punished and you want horrid things to all the not very nice people in the world. This statement is my downfall. Many people living with chronic illnesses feel angry, I am one of them. I'd like to think that one day I'll feel less angry, or to perhaps accept the anger and just get over it. I know I am not alone here, I know the people who love me have felt angry but they've managed to accept it and almost put it in a box.
To be honest I think that other people and what they think has a huge impact on how I feel. There are so many misconceptions about living with an invisible illness. There are many articles about this on the internet so I don't want to just repeat what other people say but it's worth a google if you can! Just to pick some of them out which strongly relate to how I feel and live....
1. If chronically ill people are enjoying themselves then they can't feel that bad.
Really??? Are people still saying this?? I'll stay in the house every day then eh?! It's madness this! Wise up man! I've done so many things with a splitting headache, doped up on strong painkillers! I've worked with lots of bands and at festivals with a headache that would floor most people.
2. You look fine, so probably are fine.
Dear the rest of the world,
Please don't make me shave my hair off so you can all see my scars and my lovely shunt, you'd all freak out and vomit. When you ask me if I'm ok and I say 'fine thanks'. I feel you'd like me to go through my medical info for the last 7 days. Do you want to know how many painkillers I've had that week or how much sleep I've had? I don't want to bore you with complicated medical information and neurological terms! Oh, and if I'm smiling, I'm being polite, I'm putting on a brave face, I'm not without pain or anxiety.
Yours,
Nina
3. You're drinking wine so you can't be that ill.
Now I know most of you get told not to drink alcohol when taking medication, you will struggle to find a brain surgeon who will say this. To be fair, I no longer drink huge amounts of alcohol, not because a doctor or consultant told me too though, but because at the age of 30 I realised I felt better off without it! I reckon most of you would feel that way, but I'm not preaching, do what you want! Please note though, there are some medications which you absolutely should not drink with! You can generally tell by the way the doctor says to you with a look of utter shock and disgust on their face!
4. I'm strong and brave.
I'm not. I don't have any choice. You get on with it or you don't. If you don't you see the hurt and pain in your loved ones faces. When you do, you get on with it.
5. Everything will be ok.
It won't, not unless I get that brain transplant which would obviously change who I am. Things may get easier, then they'll get harder and then they'll get easier and then they'll be harder again. Honestly there are more ups and downs in chronic illness than the yoyo of the best yoyo user in the world.
I've been so sad recently, I still am. I know I've done lots and should be proud of myself but sometimes I think this is part of the problem. I one million percent agree that you bounce back when you're younger. I felt like a ninja for many many years. I think within the past few months, the lack of bounce has been apparent. I'd almost say there's no bounce at all a lot of the time...kind of like throwing an egg on the floor....you just get a splat! I feel like a splat. A massive splat at that! I've had hard times before and I know I'll come out the other side, it's just harder now I'm older.
I'm coming back to the statement I say to myself regularly...'It's not brain surgery, look at what I've achieved as an ill person', that and 'I'm one of the luckiest people in the whole world'. What a big fat lucky duck I am!
Happy days keep dreams afloat!
Until next time people of the world!
N x
Thursday, 21 May 2015
Newcastle's first Unity Festival
So this year, I'm dead proud of being part of Newcastle's very first Unity Festival! In short, it's an open air, totally free music event which has been set up to proactively challenge all forms of intolerance and promote unity...
We're putting the unity back in community!
This weekend, in two days time, you'll find us in Leazes Park in the centre of Newcastle upon Tyne. There are many amazing acts along with some awesome DJs, a kids area, a debate tent and a dub area! We're all very excited and hope to see lots of very lovely and very happy faces having lots of fun at the weekend!
You can still contribute financially to the festival, every penny counts and it will all go to ensuring the festival is fabulous. It will also give us masses of confidence that we will be able to run the same event next year with even more fabulous acts!
Here's the link should you have any spare pennies to give, then please do! You'll be thanked!
There'll be all kinds of wonderful stalls and an amazing selection of lots of fine food! There will also be cake! We all know how important cake is! Your tummy is in for a treat!
There's a bar too....you've got to be a grown up to get an alcoholic drink mind! So, if you're like me then bring your ID (it's ok, I'll look 30 when I'm 45)!
So lovely people, in short, if you're in Newcastle upon Tyne this weekend then there's only one place you should be - LEAZES PARK, 1 - 8pm, SATURDAY 23RD MAY! Be there or be not very cool!
Monday, 16 March 2015
Ode to my hero (dad)...
My dad suffered an injury in the Army, he then was struck down with Wegener's Granulomatosis is a very rare autoimmune disease. He's an awesome man with many tales about his life experiences!
MASSIVE shout out to my mum here. She's almost lost her child and husband yet she's the strongest woman I know.
So recently i've been struggling with the words to explain,
what it's like to see my dad in less pain...
From an every day thing to just once in a while.
It's been over 15 years since we saw his true smile,
My dad is my hero, was an everyday GI Joe.
But we lost him to illness abut 15 years ago.
When I say we lost him - well he was still here,
He just was a different man, me and mum shed a tear.
Now that he has his love by his side,
You'd think they were on a magical carpet ride!
There are no words to help me explain,
What it's like to see my gorgeous happy dad again.
I knew he was in there somewhere,
He was drowning in 'life's just not fair'.
The world doesn't stop when you struggle with being ill,
You've just got to keep up, to plod along until...
And once more, with relief, things will be different once again.
...there you are, back in the game,
Stay strong, be positive, you've got to want to live.....
...he did, he's back and has so much more love to give...
Saturday, 14 March 2015
Superhuman or Superhero - the life of a chronically diseased person!
Personally I prefer the Superhero term over the superhuman or chronically diseased. Whilst other people are ecstatic on winning the lottery or bunch of flowers, when this never happens to me.....I have to remember how really lucky I am....luckier than most!
Yes.....that is right, you just heard me say I'm lucky! Without a doubt, surviving brain surgery 8 (or 9?) times makes me pretty much a Superhero! The fact that I can see out of one eye albeit not very well and walk and think and know what the hell is going on makes me, without a doubt one of the luckiest people to ever grace this planet....
....which brings me to my next point.....Superheros. So, why I think I'm ok to call myself one...well, they've all got issues these Superheros.
Spiderman - bitten by a spider and therefore horribly diseased with spider webs squirting from his wrists, clinging on to buildings and such like.
X-men - many of them are some what disabled in the real world yet their powers enable them to be superhuman in the not so real world. Whether they have additions to their physical beings or not. They're all not quite right or different!
The Hulk - well, he clearly has some serious anxiety issues, is he even a Superhero? Superhuman more like, I can only be thankful I don't turn green when I'm having a rubbish day, feeling angry or down. That would not be good, he's got it quite bad don't you think?! I mean no one likes a massive drama queen and to me, he probably could put good use to some anxiety medication!
Batman - poor little soul he is, major anxiety issues and stress problems after the loss of his parents. Oh and also, he's really scared of bats. I'm thinking he probably has some kind of severe OCD going on there.......bats are not that scary! (Unless you believe in vampires then you probably have ever right to be scared. I wouldn't like to rule out vampires - I am more of an inclusive kind of girl. They wouldn't want to drink my blood anyway....or would they?!)
There are many more too - Daredevil; well he's blind which leaves his other senses hugely heightened. Although I am not blind in both eyes, I do no that your other senses absolutely become heightened. Sadly, being blind in one eye (like me) does not leave any kind of heightened sense. Just the ability to pour drinks all over a table instead of in the glass, misjudge the height of steps and my favourite power - the walking in to door frames and lamp posts.
Now, this is something I missed - probably because I'm not that in to Superhero comics or films so you all may know this but I certainly didn't! Iron man, that thing on his chest. Well, not just a thing! It's basically a pacemaker! Who knew?!
Anyhoo, most people can and will never understand the massive drama life can be when you're chronically ill. We're all warriors in our own way. We're the people when 7 on the pain scale is a good day! I personally don't expect anyone to understand what it's like. Especially when you can't see it. I get that it's not an easy thing for people to not judge others on appearance but there are plenty of us. I think I can speak for all of us when I say, please don't judge us on the fact we're standing tall with a smile on our faces.......judge us on the superhuman strength we have to stand there with a smile on our face when inside we're damaged and hurting.
You without a doubt change who you are when you're in a position like mine. Just as experience and environment can change everyone as people. Pain and hurt and sadness has changed me. If you ask me how I am, my standard reply will be 'fine' or 'ok, thanks'. After 16 years of being ill I find it easier to say that than bang on about the same thing for 16 years and the rest of my life! It's so much easier to pretend to be 'fine' than to explain what ever pain or trauma I am going through. I feel very much like I can't expect people to understand, it's too rare and complicated, plus to have to go through a load of medical terms and whatnot repeatedly would just get so so boring - for me and you.
So, I suppose what I am saying is that I'm constantly fighting, I have to. If I didn't then I may as well give up and stay in bed. I don't think many people would blame me for that but it just isn't me. I have a feeling that one day this may change, i'm hoping it's when i'm really old though. There will most likely come a time when brain surgery just isn't easy anymore. Right now, it has to be, I have to look at it as a normal life occurrence. If I didn't I would worry about everything a whole lot more.
Today I read an interesting quote...."Scars are tattoos with better stories" - and what a story I have! I do have one tattoo and it was something I got because of my illness - it says "C'est la vie" - french for 'That's life'. It reminds me every day that brain surgery is life and that's ok. It has to be ok, if it isn't then I've got problems....it's only brain surgery.
I'd rather not write about the things that could go wrong during brain surgery, although I am well aware, as are my family but it really isn't something you want to think about. I recently read a one of these 'Keep Calm' posters with regards to brain surgery - 'Keep calm, it's only brain surgery'. It's only brain surgery indeed.....perhaps when you hear people complaining about runny noses and sore throats, you may think of this!
As I am getting older I feel it's more important to remind myself of the above, I was a much stronger young person. If brain surgery had of been a person, oh by goodness they would of experienced the nightmare of Nina but it's not! I have to remind myself of the strength it takes for me to be who I am and do what I do and be proud....really proud.
I hope I can inspire other people and young people with awful illnesses to not feel bad when they need a day in bed or just want to hibernate for a while. It's fine. Don't ever feel like the world is passing you by or that you aren't living life to the full. It's ok, it's life, it's my life and your life. I may never make millions from working but I will have done amazing things as a person who has been through a lot and achieved a lot more.
Be back soon!
N
x
Yes.....that is right, you just heard me say I'm lucky! Without a doubt, surviving brain surgery 8 (or 9?) times makes me pretty much a Superhero! The fact that I can see out of one eye albeit not very well and walk and think and know what the hell is going on makes me, without a doubt one of the luckiest people to ever grace this planet....
....which brings me to my next point.....Superheros. So, why I think I'm ok to call myself one...well, they've all got issues these Superheros.
Spiderman - bitten by a spider and therefore horribly diseased with spider webs squirting from his wrists, clinging on to buildings and such like.
X-men - many of them are some what disabled in the real world yet their powers enable them to be superhuman in the not so real world. Whether they have additions to their physical beings or not. They're all not quite right or different!
The Hulk - well, he clearly has some serious anxiety issues, is he even a Superhero? Superhuman more like, I can only be thankful I don't turn green when I'm having a rubbish day, feeling angry or down. That would not be good, he's got it quite bad don't you think?! I mean no one likes a massive drama queen and to me, he probably could put good use to some anxiety medication!
Batman - poor little soul he is, major anxiety issues and stress problems after the loss of his parents. Oh and also, he's really scared of bats. I'm thinking he probably has some kind of severe OCD going on there.......bats are not that scary! (Unless you believe in vampires then you probably have ever right to be scared. I wouldn't like to rule out vampires - I am more of an inclusive kind of girl. They wouldn't want to drink my blood anyway....or would they?!)
There are many more too - Daredevil; well he's blind which leaves his other senses hugely heightened. Although I am not blind in both eyes, I do no that your other senses absolutely become heightened. Sadly, being blind in one eye (like me) does not leave any kind of heightened sense. Just the ability to pour drinks all over a table instead of in the glass, misjudge the height of steps and my favourite power - the walking in to door frames and lamp posts.
Now, this is something I missed - probably because I'm not that in to Superhero comics or films so you all may know this but I certainly didn't! Iron man, that thing on his chest. Well, not just a thing! It's basically a pacemaker! Who knew?!
Anyhoo, most people can and will never understand the massive drama life can be when you're chronically ill. We're all warriors in our own way. We're the people when 7 on the pain scale is a good day! I personally don't expect anyone to understand what it's like. Especially when you can't see it. I get that it's not an easy thing for people to not judge others on appearance but there are plenty of us. I think I can speak for all of us when I say, please don't judge us on the fact we're standing tall with a smile on our faces.......judge us on the superhuman strength we have to stand there with a smile on our face when inside we're damaged and hurting.
You without a doubt change who you are when you're in a position like mine. Just as experience and environment can change everyone as people. Pain and hurt and sadness has changed me. If you ask me how I am, my standard reply will be 'fine' or 'ok, thanks'. After 16 years of being ill I find it easier to say that than bang on about the same thing for 16 years and the rest of my life! It's so much easier to pretend to be 'fine' than to explain what ever pain or trauma I am going through. I feel very much like I can't expect people to understand, it's too rare and complicated, plus to have to go through a load of medical terms and whatnot repeatedly would just get so so boring - for me and you.
So, I suppose what I am saying is that I'm constantly fighting, I have to. If I didn't then I may as well give up and stay in bed. I don't think many people would blame me for that but it just isn't me. I have a feeling that one day this may change, i'm hoping it's when i'm really old though. There will most likely come a time when brain surgery just isn't easy anymore. Right now, it has to be, I have to look at it as a normal life occurrence. If I didn't I would worry about everything a whole lot more.
Today I read an interesting quote...."Scars are tattoos with better stories" - and what a story I have! I do have one tattoo and it was something I got because of my illness - it says "C'est la vie" - french for 'That's life'. It reminds me every day that brain surgery is life and that's ok. It has to be ok, if it isn't then I've got problems....it's only brain surgery.
I'd rather not write about the things that could go wrong during brain surgery, although I am well aware, as are my family but it really isn't something you want to think about. I recently read a one of these 'Keep Calm' posters with regards to brain surgery - 'Keep calm, it's only brain surgery'. It's only brain surgery indeed.....perhaps when you hear people complaining about runny noses and sore throats, you may think of this!
As I am getting older I feel it's more important to remind myself of the above, I was a much stronger young person. If brain surgery had of been a person, oh by goodness they would of experienced the nightmare of Nina but it's not! I have to remind myself of the strength it takes for me to be who I am and do what I do and be proud....really proud.
I hope I can inspire other people and young people with awful illnesses to not feel bad when they need a day in bed or just want to hibernate for a while. It's fine. Don't ever feel like the world is passing you by or that you aren't living life to the full. It's ok, it's life, it's my life and your life. I may never make millions from working but I will have done amazing things as a person who has been through a lot and achieved a lot more.
Be back soon!
N
x
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