The Disabled are just Neanderthals who don’t belong in the 21st Century….

It feels like I’ve been reincarnated into someone else and become a stranger to myself. I died inside when the fiery ice smothered me and now all that’s left is the outer shell of a rotting corpse. I know not who or what I am, what my purpose is in such pain-riddled circumstance or what the point of such an existence is. I resent that to so many I’ve become an inconvenience who is so reliant on other people – 3 times in recent weeks the carer hasn’t turned up – I ring and I message and I chase it up to then be fed excuses – bare-faced liars trying to pass their incompetence on to me. I might be a cripple but that doesn’t make me stupid…!

What is it with discrimination towards the disabled anyway…? Earlier this year at my local hospital they refused to get me a raised toilet seat & wheelchair to take me to the bathroom, then insisted I use the commode which I couldn’t sit on properly – unable to sit far enough back for the rigid nature of my crippled frame. I pleaded and pleaded with them, trying to make them understand – practically begged them to get me what I needed, yet they would rather I shit my pants instead of supplying me with the required aids to use – there are many places people with disabilities get discriminated against but the last place you’d expect it is within the health service…

We already live on the fringes of society – right at the bottom of the political food chain and social norms and having just your bad health to contend with doesn’t seem to be enough. The prejudice us disabled get is astonishing and when you throw an invisible illness into the mix the battle just got big. You’re constantly at war with the system that controls us; whether it’s the health service, benefits system or place to live with the required adaptations – it’s fight after fight and it gets draining – it’s like they think you want a life of discrimination and of no quality – that you want to lose control of where you’re going to be living and how much money you have – it’s all on their terms – we’re controlled by an government  that’s impossible to trust leaving more vulnerability…

People see you differently – like you’ve become a different species for being either mentally or physically impaired – or Neanderthals who don’t belong in the 21st century and with all this physical pain I’m not so sure that’s a world I want to be in…

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Cruel and Beautiful World…

Life is bland – the air is stale and there’s something inside me screaming. It’s on a reel going over and over again. Broken on repeat… I can’t see anything; no future, no hope – there’s nothing there… It’s okay trying to be positive but when I’m worsening like I am it’s frightening. I may have a physical identity but I have no idea who or what I am other than their ambiguous loss… and a cripple… this is not okay and it never will be… not with all this pain involved. I’m not sure how much longer I can take this for – it’s my worst nightmare – I’m trapped inside my own body – I just lay here suffering and it’s only getting harder – this is no life to lead. It’s no life at all… It’s hell in a cruel yet beautiful world… How can that be so…?

Ignorance is bliss they say – not when you’re a product of it…

This pain is immeasurable – indescribable and inconceivable for others to ever understand. I’ve deteriorate so much already this year and I’ve nowhere else to explore – having recently been denied a trial of the Spinal Chord Stimulator because, “with your current level of disability and distress, in my opinion spinal chord stimulation is going to do more harm than good,” I’ve come to a dead end. He said I need to motivate myself more – me, motivate myself, ha ha that’s funny that is – he wouldn’t be saying that if he knew the person I used to be…

I’m not sure I’ll ever be able to accept this life; not because of the pain or disability, the isolation or loss of my able-bodied life, but the fact I have absolutely no understanding of why…? What even is CRPS…? Why doesn’t it get taken more seriously…? Is it just a category everyone with unexplained pain fits under…? Why isn’t there enough help out there…? I’m confused. Having had 2 separate CRPS diagnoses to then recently have a psychologist say they’re weak and she believed what I have is a mental disorder (Somatic Symptom Disorder) I mean, what the fuck is going on here…? That’s like saying I went in for an operation and magically woke up mentally ill – or that I’m hallucinating the discolouration of my operated leg and clawing of my foot – visible symptoms.
It seems a cop-out to palm chronic pain patients off as having a mental disorder to explain their pain – damn right I’m mentally ill – my head is completely screwed up I know that, but that’s not why I’m feeling all this pain – It’s because of everything resulting from the pain – pain pain pain pain pain. My social worker said not too long ago about some people being able to cope with chronic pain better than others – was that her way of saying I’m a wimp…? Is that really how people see me…?

I worked up to 80 hours a week before my hip operation – in constant pain and it had no effect on my life or mood whatsoever apart from a little frustration every now and again – even for the first couple years after the surgery had made me worse I managed an intense Access to Nursing course at college and worked part time. But this pain is something else on another level entirely – it was like some external force took over my body and the burning that only affected my hip post-op spread through my lower body with each passing step – the difference in pain over the space of a couple of days was massive and my body has never looked back. Over the last few years I’ve gone from walking with a limp to needing an electric wheelchair recliner to get about – and that’s never for pleasure given how much pain I have in my butt cheeks when sitting. There’s not a second that goes by where I’m not in huge amounts of pain – my legs are either on fire or ice cold where my bones feel like they’re being crushed – what is it with that and this sweating is getting out of control…?

I don’t use the word cripple lightly but this pain in my legs has well and truly crippled me – my life is now pretty much spent lying down and I haven’t got here through psychosomatic pain. It just does not fit with how this pain has unfolded…

Many thanks for reading – follow me on Twitter @aChronicPainPoW

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

I’m a 31 year old, old man!!!

I always try to step outside myself to try and see what they see but the outcome is always the same – I get lost in a meddle of thoughts that can range from their compassion and understanding to doubt, pity and sheer disbelief that what I’m feeling is real and that it’s all down to a negative attitude.

I have absolutely no way of knowing how the next few years are going to pan out but I have an idea – and judging by how much I’ve deteriorated over the last year alone, that thought doesn’t even bear thinking about. But I have this great pride thing going on which I need to overcome – I’ve pretty much stopped all but my immediate family from visiting – I hate for people, even those I know that care, to see me like this and I don’t see it changing anytime soon.

I know there’s a transition period when you lose the use of your body like it was before and wind up crippled like me – and I say it all the time but the constant deterioration is proving to be a fucking nuisance here and it is slowly killing me. When people get old their body suffers more with the cold – their flow of blood slows down and their skin is cold to touch – when my pain is at the very top end of the pain scale, which is about 80% of the time, my legs are like ice for the poor circulation going on inside my body, and, like theirs, due to having less muscle tissue, my metabolism is slowing down – I’m a 31 year old, OLD man!

So for someone who used to be so carefree of the judgements in society about the way I look, it’s all changed now. I sit having full blown conversations between myself and their mind – or what I think is on their mind and it can get pretty draining. It’s just easier to push people away, rather than they see you so broken – I’m not the same person anymore so it’s like they would be in the company of a stranger and a truly miserable one at that anyway…

“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…

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.

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

Being Lyrica – A Change in the Psyche…

I’ve felt as though I have been going crazy for quite some time now and maybe I am, but my recent attempt at trying to rid myself of the Lyrica I’ve been taking for the last year has proven to be utter HELL, both physically and mentally! Not only that, but could the way I’ve been coping with my on-going health issues be down to the effects this medication has on the brains chemistry and not so much because of the pain…? I’m not saying the pain won’t get me down because it will, and I know for sure coming off the meds wont give me any more physical ability, but is this medication causing me more harm than good…? I believe so and it’s time I go this alone… It’s time to live clean…

My body was completely drained and in dire need of sleep – it had been 3 days since I had stopped the medication completely and I had been awake for 48 hours – after finally getting myself off to sleep I woke up within 2 hours, dripping with sweat – I was barely able to catch my breath due to blurred vision, and the voices, lots of them coming at me from all directions – they were really intense auditory hallucinations and I seriously thought I was losing the plot – it seemed my anxiety had shot straight through the roof and out into the cosmos. And my word those ants, it felt like there were thousands of them all high as fuck on acid, crawling under my skin, literally all over my body and they were angry – really pissed off –  someone had deprived them of their Lyrica!!!

It wasn’t long for the sickness and diarrhoea to join in with the nightmare and as soon as I got out of bed to make my way to the toilet the cold hit my drenched, clammy body immediately – I was struggling to just breathe, it was freezing cold and my inability to coordinate the few working muscles I have left proved fruitless – it was an all fours job – I had to get on my hands and knees and crawl, my body was just too heavy to move otherwise. It was a close call but I made it just in time and was able to make my way back using my crutches – I got a towel and placed it over the sheet to absorb some of the near constant flow of sweat, but as I was about to get into bed my nausea got the better of me – I had just enough time to grab the small bin on the floor, luckily within arms reach and spewed up nothing but bile.

I got into bed but I was too afraid to close my eyes – too scared to have any thoughts enter my mind so I put the TV on – I needed a distraction from thinking – the TV had become my comfort blanket – I was exhausted and in more pain than EVER! I just lay there and breathed deeply – all the while contemplating a Lyrica to end this hell – they were just sat on my bed-side table trying to entice me in. I was KO’d – absolutely done in with it all – the manic thoughts alone were more than enough at this point but then my stomach started playing up again and the muscles in my abdomen started to spasm – I tried to tell myself it would soon pass and that I just needed to be strong enough to make it to the next moment, then the one after that, but my stomach wouldn’t subside – I could no longer move for the battering my body was taking and there was no possible way of making it to the toilet – I had a choice to make – either shit the bed or take a Lyrica so I chose the latter…

Lyrica is an anticonvulsant that was designed to treat seizures but it’s supposed to help with neuropathic pain also – this is done by binding itself to the calcium channels on the nerve endings which modifies the release of neurotransmitters in the brain affecting the communication of pain signals – It’s not addictive in the same sense as narcotics but the nervous system adjusts to accommodate the drug – without it, all those miles of nerve endings get sent into an absolute frenzy putting the whole nervous system into disarray.

So in other words – these drugs are bad – very bad, and I would NEVER condone the use of Lyrica for any reason. Ever! It slowly creeps into your being and destroys your ability to even string a sentence together – it’s pure poison and the profound effect this drug has on the psyche is bad enough but everything else that goes with it makes the experience Hell on Earth! For the last 2 years I have been a product of anticonvulsants – I truly believe it’s prevented me from growing as a person and halted my progress in dealing with my on-going mental-health issues – as I said, my physical ability will remain the same and pain will more than likely increase but I can’t live like I have been doing. I’m currently taking 400mg daily, down from 600mg and will talk about tapering off this drug at my appointment with the pain clinic at the back end of this week – one thing for sure is I’ll be doing it as slow as possible!!!

The thing is I don’t think the professionals at some of these ‘pain’ clinics are aware of how bad these withdrawals can be – especially on top of the chronic pain and limitations which are already there. I mentioned to the ‘pain’ doctor at my last appointment that I was planning to come off the Lyrica as I didn’t think it was doing anything, yet he said nothing – ‘could’ve done with a warning you ignorant sod!!!’ It seems to me it’s strength is over-looked because it isn’t a narcotic, but these pills should not be taken lightly…

So that’s been my experience with trying to come off this filth – these are my views and experiences only – I know that Lyrica helps others to live a more active life with less pain but it’s not for me. Absolutely no chance!!!

Thanks for reading…  Follow me on Twitter @aChronicPainPoW

False Alarm!!!

It hits like a ton of bricks and everything becomes all blurry again, giving an all too familiar feeling. I was hopeful the nerve block would be the start of something new – the beginning of a building process for a better future, with a body that would eventually listen and understand – but turns out it was there to provide me with more false hope – there to fill me with a clearer vision for a short time only to then blind me for the dark.

My legs are on fire like never before – trying to put more pressure on my operated leg while moving around with my crutches was a bad idea – again! This is crazy, absolute fucking bonkers! Your torturous ways are beginning to get too much and yet again the world stops spinning. I feel like such a fool; telling my family that I thought the procedure helped gave them false hope too. This pain is immeasurable – the life I am leading here is hell on earth and I wish I didn’t care much for it anymore but I do – I want so bad to feel like I’m living again but the reality is, it seems the future is one of an existence filled with both emotional and physical pain I don’t think I have the strength for.

I’m not ashamed to admit it but I must be weak – you would think after all this time I’d have come to terms with my on-going illness, but as the tears blur my vision the reality is different – I’m just as much of a mess now as I was 4 years ago when first diagnosed with CRPS, only back then I had the denial for comfort – it’s only this past year it’s all become very real. 4 years is a long time not to have made any progress with acceptance but it’s hard when the deterioration is so constant and rapid – and to still think of suicide as often as I do makes me wonder what the point of all this suffering is.

So I can safely say the nerve block hasn’t helped – in fact I’m worse than ever – good times!!! 

Thank you 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…