disability

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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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…?

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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…

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!!!

Just an Update…

I feel like I’m in a constant state of hibernation – not only am I unable to venture out due to inexplicable pain levels, I seem to have shut myself away from the world completely the last few weeks by rarely going online… I promised myself not to neglect my blog but it appears as though I’m doing just that!

Things haven’t changed much. I decided to go ahead with one on one physiotherapy up North but it was a bad idea. It left me in such agonising pain I don’t think I’ll ever be able to bring myself to get in a car again. I know it sounds extreem but I was in a living hell. Imagine holding your hand over a flame for as long as possible until you need to pull your hand away – that’s what my whole upper body felt like for the week after my appointment – the pain literally made me physically sick.

I was supposed to have my psychiatry appointment the day after as well but there was no way I could make it. I sent my Mum as I didn’t want them thinking I couldn’t be bothered and she literally begged and pleaded with them to enable me to have a home appointment – well it seems to no avail as they said they’d send me a letter which I still haven’t received…

Anyway, I got the general practitioner round and told him I could no longer make the trips up to pain-management and that I needed to try out different medication due to how much worse I’m getting on the current meds I’ve got.  Apparently he’s not in a position to do that as he doesn’t know enough about CRPS and the only way I can try out different meds is if I head back up North to the ‘specialists.’ He wouldn’t even change the medication for my depression after telling him I was suicidal – he then had the audacity to ask me to tell him about my suicidal feelings – why on earth would I delve into that part of me and express those wretched feelings when you’ve already stated you can’t do anything thing about it….

Our health service is a joke… It’s only my Occupational Therapist I feel is with me on this and takes what I say literally. When I say I’m house-bound I mean it!!! I’d give anything to go for day out, or take a trip up to my Mums house and be able to go for a Jimmy Riddle without the concern of using the stairs or just take one fucking step without being plagued by pain, and, I’d give absolutely anything to be able to start paying my taxes again.  I wish I wasn’t incarcerated in my own home but the reality is I am and that is the be all and end all…

On top of everything else i’ve started developing blisters on my left foot which is the one I fully weight bear on when using my crutches. At first I thought it was a bit of athletes foot which I had once before a few years ago, but I’m beginning to think it’s more CRPS related. It seems to be one thing after another at the moment – I spend most of my time lying on the couch as sitting is becoming more and more painful and the burning in my butt cheeks more intense – which is leading me to think the wheelchair won’t really make much difference to my life.

On the positive side though,  I’ve started using my Pilates reformer again but I’m just doing minimal exercises every other day, sometimes leaving it two days instead of every day like before. If this doesn’t do me any good I’m going to get a massage therapist round once a week… I have to keep trying out different remedies in the hope of some relief or an improvement in my condition…