Poetry

When the Fire burns out…

Sometimes there are no happy endings, if ever…! No matter how strong you think you are, how much fire is in your belly or how often it is stoked; somehow an over-powering sense of nothingness leaves you gasping for air. You can’t eat but wretch – struggle to breath and choke on the unrelenting pain that brought the times of old to an end, and the search for any zest becomes infinitely out of reach. The roads that once stretched for miles and miles, veering off into an array of directions, with endless possibilities, all bind into one as we fade off into the distance – pin-point and frail – on route to a painless fixed abode – greeted by a powerful shaft of light, with no love lost and plenty of wings unfurled – a feathered embrace – no more longing for the past or what could’ve been, but living a permanent dream-state – all warm and laid bare amongst the sensuous lavender plants…

It’s impossible not to let certain thoughts consume you. I think of how I used to moan daily about the most trivial of things; The dead-end job I was in, having no money and the pretence that filled my hometown. When I hear this and the like I turn all cold inside. It frustrates me because life is precious – a truly wonderful gift but we only get one shot at it and I’d give anything to even just pay my taxes again – something my own ignorance used to harp on about – maybe I was more like them than I realise. Ignorance might be bliss for yourself but I assure you it can have a big impact on other people’s lives – open your mind, not everything is so black and white and don’t be afraid to explore the unknown – your ego shouldn’t define you, don’t let it, it can be dented from time to time, you know…

And as the blood ices up setting perfectly around my bones – crushing them – expanding and not letting up; I think of that final stretch – the long road to freedom and the comfort it brings knowing I have full control over it. Don’t waste the one time you’ll ever set foot on this beautiful ball of gas. Live and breathe every step you take – do something new every day – test yourself and remember materials don’t provide you with love – people do and nature too – lend an ear, give your time and attention with no distractions – travel the world, have a family and fuck until your hearts content… And give give give…

Many thanks for reading – follow me on Twitter @aChronicPainPoW

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“I’m okay,” is a Lie I tell every day…

The deterioration is there for all to see and my abilities are so limited now – it’s beyond belief how it’s come to this from an Hip Arthroscopy – the reality now is pretty much a life spent in bed…! I mean, come on – is it even possible to get any fulfilment from living that life? I have to remind myself that this path was paved for a good reason and it won’t always be this hard – that something massive will come of it and I’ll look back in a few years time thankful for getting though all that’s come my way and making something of myself anyway – and when they come by those times are good – when you’re all warm and content because CRPS is cold and shallow and takes so much away from you…

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You have to be okay in your own company when living a life in constant pain – and if not you have some re-programming to do or else you’re fucked – because in the same four walls, 24 hours a day, 7 days a week 365 days a year you have some serious time to fill and a lot of soul-searching. But it soon becomes the ‘norm’ and you get accustomed to a solitary life behind closed doors – completely forgetting the way of our culture. But that’s what crippling pain does to you – it turns you into a loner – someone who’d much rather be on their own than have to face the realms of society, riddled with pain, with a good chance of it increasing to unbearable levels; But things out there are much the same day by day anyway – people come and go to work – stay at home watching the same shit on TV and go on the same god damn holiday once a year. I never wanted that and it seems my wishes have come to be, although in ways I’d never have expected and worse than my worst nightmare.

And still, there are times when it doesn’t seem real – and others when I can’t but help to wonder how it’s all come to this – but there is no point in questioning how it’s all come to be because it is what it is and it doesn’t change anything. Not much goes on in my world anymore and I don’t have much excitement around me but there is a purpose – that’s what I have to believe and while I’m yet to find it I’m almost certain it’s in my writing – so while there isn’t much to shout home about at least I’ve something to keep the trains headlights In tact.

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And there the depression shows – it becomes ingrained in you and at times so nauseating – it sets up home inside a mind that wants to do so much, but it’s locked inside a body that can do so little. There’s this constant fear of the world and everything inside it – you wake up with this stomach churning anxiety for fear of what the future holds – all the while holding an intense sadness that you made no one proud of your able–bodied past, and will never get a chance to – you can’t but help to mourn. Every now and then you’ll have this glimmer of hope that some good will come and everything will be okay  – it’s short lived but they’re the moments of which are essential for survival – they need to be cherished and tucked away somewhere in the corner of your mind, because believe me, those files need to he opened from time to time…

So with Christmas looming I’ll put my face on and smile, because that’s what we do, we lie and we deceive – it seems looking at it that way I’m everything I hate in a person – but in order to save piling our misery onto everyone around us all the time we have to sin and say, “I’m okay,” when really that couldn’t be further from the truth…

Okay many thanks for reading – follow me on Twitter @aChronicPainPoW

Just an Update…

Well the nights are drawing in and the air is icing up – it makes the muscles in my legs feel all sharp like there’s thousands of pins stabbing them all over – I’m truly dreading winter this time round – the change and deterioration that’s happened over the last year has been huge and the colder weather is felt so much more due to the lack of blood flow I have in my legs. It’s been a tough few days here and I’ve found myself to have lost the plot again – it’s a familiar place I know will pass but this needs to stop! I hate myself when I lose control of my emotions – the lack of control I have over my physical well-being is causing me to lose control of my mind. I work so hard to get through each day and even harder at improving the quality my frame of mind is in, but it’s so easy to lose it all in just a single moment and wind up back where I started.

There are no expectations for my sympathetic nerve block that’s scheduled for the 2nd of November. If I get a little relief for a few weeks then great, but I’d be a fool to expect anymore than that. If it stops me from being in so much pain caused by the journey there and back then at least there’s something. Some might say that’s a negative approach to take but it’s the safest – one thing I’ve learnt is not to build your hopes up too much ready for one almighty fall when things don’t go as you tried to believe. 

I’ve had very little inspiration lately but i’m determined to keep this blog on the go. I’m unsure of what to do with it though; keep it as it is? Post chronic pain articles and research I come across so I post more? Make it less personal and more of an info site? It’s hard because I’d be lying if I said I didn’t want lots of traffic – after all we need as much awareness for CRPS as possible, and who doesn’t want thousands of people reading their work and stopping by a website they’ve created. I certainly do. The more people who see it means more chance of making a name for yourself as a writer – it must feel good – maybe I’ll write about it someday.

No Excuses!!!

If the average life expectancy for men in the UK is 79 that means there’s 48 years ahead of me being virtually bed-bound. It’s pretty daunting when I think about it like that which is why it’s so important to take life day by day and not think about the future too profoundly – at least I have plenty of time to learn how to manage and deal with my on-going deteriorating health…

There are no excuses though! No excuses for me not to achieve because through all the physical and mental pain I’ve gone through my calling has found me – writing has been in me for as long as I can remember and lifes events have given me no choice but to pursue this vocation. Growing up the half empty glass always told me I’d never be a writer – that I wasn’t born with the talent to get a book published and make a living from the art of words. But, as time goes by I’m realising how important it is for me to write about what I’m going through and put it out there into the world for all to see. I want to inspire and make people realise they are not alone, and whether I’m good enough or not only time will tell – but I’ll never know unless I put my heart and soul into it and there is a little part of me that believes, one day there will be a bind with my name on it in all four corners of the world. Imagine that ey!!!

We all say things we regret, things we wish we hadn’t that has left a scar on someone in some way. Anger goes hand in hand with chronic pain and I’ve said a fair few things I shouldn’t have to the people who love me the most – to those that least deserve it. For years I’ve also said I’m going to write a book but the nearest I’ve got to doing so is a chapter every now and again, later deciding it’s not up to standard and scrapping it never to be seen again. It’s not good enough – being a man of my word is important and you can never take back what you say – I don’t want the last thing I say to someone to have been born out of anger or frustration due to the struggles I have with my health, and I certainly don’t want to be a guy that doesn’t stick to what he said he would do, because a man without his word is nothing… 

So watch out for a bind with my name on it – my blood name, C.Kakoulis…

Actions Speak louder…

I’ve slowly started coming off all medication apart from the only one which takes a slight edge off the pain from time to time which is the 15mg of Oxycodone. I’ve been on Pre – Gablin (600mg) for over a year now and Gabapentin before that, ibuprofen 3 times a day with 1 omeprazole first thing to help with the stomach pains caused by the ibuprofen, 2 Paracetamol every four hours and Mirtazapine once a night for the depression – I think it’s safe to say they are of no benefit to me whatsoever  – the only reason I’ve been taking them for so long is to keep the doctors from thinking I’m not making an effort to treat my pain – all that matters to me now though is, so long as I know I’m doing all I can to help myself that’s all that matters.

I’ve been struggling for inspiration lately – there hasn’t been much to write about as all that’s happening is my health is getting worse. I’m booked in for a sympathetic nerve block at the end of the month but the pain specialist said it usually only benefits at the early stages of CRPS and I’m way beyond that, but I need to try. If it works it only lasts 4-6 weeks but it’s better than nothing.

I wonder does it ever get easier? I life of isolation cut off from the outside world! The mornings are the worst – I wake up and just lay there catatonic, everything silent except the sound of my beating heart. It’s warm under the covers and that’s where I want to stay but my body has other ideas – it seems the anxiety that hits every single morning plays havoc on stomach. I have no choice but to get up – probably a good thing really! The cold is a killer as well – my legs are permanently freezing and the cold air on them when i get out of bed isn’t a nice feeling at all – even when it’s a hot summers day they never feel warm and I’m absolutely dreading this winter! The last one was bad enough and I’ve gotten so much worse since then.

But, on a positive note, I stopped smoking the other day – I was up to 40 a day because of the boredom and I figure if there is any possible chance of me getting better I need to start being a lot healthier – so the first step is packing in the cigs, then I’m going to cut out the coffee and eventually get to a point where I’m putting pure goodness inside my body. It’s probably a good idea for me to start eating as well – I’m depriving my body of much needed goodness and it needs to change. But, these are just words – it’s all well and good saying all of this but I need to do it…

Doubt…

I never used to stay in. I was always on the go – either working or out and about doing this, that and the other. I get bored easily and never had much of an attention span. I was always up for new adventures and had every intention of living life to the full. I was a doer, a perfectionist needing everything neat, tidy and put in exactly the right places. I took pride in my appearance and may have taken my fair share of recreational drugs – it seems I’ve always searched for an escape but there’s no escaping this…

It really bothers me when others doubt my situation implying I am choosing this way of life – it bothers me even more when that doubt comes from the health service. I worked since the day I left school and got my first part-time job aged 13. I don’t enjoy hand-outs and certainly don’t enjoy spending all my time all couped up amongst the same old four walls, with a great view of concrete to take in with my morning brew. I’d give anything to have my old life back and the fact people actually think I want this life, enjoy not working, eating or sleeping and being in constant agonising pain, destracted by a thick black fog are seriously fucking ignorant…

Its been hurdle after hurdle over the last few years with a lot more ahead of me – but one of the most difficult thus far is the lack of recognition this absolute beast of an illness gets, and the pain us sufferers have to go through 24/7 – from my experience it appears only the pain clinics have heard of CRPS and where I live they aren’t even worth their name. Empathy is seriously lacking and the doubt received when telling of the pain takes the isolation to another level. Fair enough if friends, family and strangers think bad and doubt me with regards to my health and situation – that’s understandable with the amount of small minds there are in the world, but when the health service are the same, along with being clueless, the battle gets bigger and survival tougher…

But, I have to try to stay strong, and keep searching for the strength to carry on because suicide is not an option for me anymore – as easy as it would be I want to be a winner – I can not let CRPS beat me. Today has been an okay day!

Trying Times…

It’s the pain I’ll leave behind. The image of being all cold and blue, lifeless in your arms – stroking my face with the palm of your hands, untying the noose, head bowed to the ground.

It’s that thought which keeps me here, a human being, your son. But to be freed from pain brings comfort and joy, with a peace that rarely comes by. This burdening sense I just can’t shake off – the guilt of my needs and pain I put you through, it’s torture. If I was to go you no longer need worry, my brother will take care of me where I’d be pain-free, resting quietly, upon your other shoulder. It’s all that is thought of on the darkest days, becoming more and more frequent as time goes by. Selfish I know, but it’s the coward in me. It’s who I am right now and what I’ve become. A fucking cripple with a body broken, fully scorned, let it burn, let it burn!!!

But it’s for you I will try my damnedest not to succumb, for if I put the pain aside, I’m an incredibly lucky guy – for all you’ve done, your love and nurture, a wonderful soul so giving in nature. I never went without, you kept my feet on the ground, you shone a bright light when hard times came round. But is it enough to get me through? That I can’t promise, but one thing for sure is, I’ll certainly try my hardest…

Nothing but the Dark…

I used to love the feeling you get when waking up from your worst nightmare – that moment  when you realise you’ve left the extreem anxiety and hopelessness behind and your eyes have come to a halt – when you can curl up all snug amongst the quilts and go back to sleep, knowing that when you wake everything will be okay.

Well, I’ve resounded myself to the fact this is a feeling I will never have again! The reality I’m in has become worse than any nightmare I’ve ever had and all hope is gone for making a recovery.  I’m tired of of it all. Each day is becoming more and more of a struggle and I’m not sure I have the strength to live a full life like this – one where darkness is my home and the view from the other side gets more appealing by the day. I don’t want to die, but I don’t want to live with this pain either – if someone was to offer me a shot of that heavenly potion they use at the Dignitas clinic in Switzerland I’d take it in a heartbeat (Excuse the pun) I really would.

For what is life without hope. When recurring thoughts of a knife in the jugular or a perfectly woven noose become more frequent, and deep depression sets up home inside of you, it becomes a monotonous spiel of black. Well i’m tired of being in the dark – I’m getting more and more crippled by the day here and I don’t know how to cope. Some days I think i’m doing okay but then the grey matter arrives and it just gets blacker and blacker and blacker. CRPS is evil, it has this bitter hatred for its host and will do all it can to eat it alive. It’s doing pretty well feeding off me both physically and mentally. I’m slowly dying and I’d appreciate it if it could shift up a gear or two. There’s nothing to look forward to anymore. Nothing! And the only light in this tunnel is the train coming straight for me!!!

WE GO ON & WE GO AGAIN…

My existence seems futile and it’s a long, arduous task just to get through each day – but we go on and we go again…

There’s not a day goes by where I don’t think about the past and how it was, or the future and how it should be – I torture myself over and over again by trying to see beyond my life as it is. I allow my thoughts to escape the safety net of my reality time and time again, when really I should be focusing on the fact there isn’t much of a future for me at all if my health carries on the way it is doing…

It’s getting to the stage now where I’m going to need to use a wheelchair to get about my own home. My appointment with the wheelchair services on the 2nd of July can’t come soon enough – the extremities of my condition appear to be progressing rapidly giving me no time to adapt. I’m blessed as fuck for the people who have been a rock for me, stood by me through thick and thin and lingered in the darkness with me ready to lend their shoulder, because without them, I know for sure that noose would have been far too enticing for me to resist.

Pain has taken so much from me but the biggest loss of all is my soul – sadness and its stubbornness fully beckoned three and a half years ago and it’s been with me ever since – it’s ripped it up into a million little pieces all the while stamping all over it in the process. I may be able to hear the beautiful sound of an acoustic guitar, smell the scent of fresh red roses at the peak of their bloom, breathe in the clouds of smoke that fill my lounge and see that unique glint in your eyes, but I don’t feel alive – this is merely an existence of which I can’t seem to come to terms with – my body hates me and it’s doing all it can to fuck me up more than it already has…