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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…

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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…

Blowing Hot and Cold…

You lay still because your muscles burn and they need to rest – rest rest rest is all you do yet they feel the need to constantly scream and cry out for help – I try to listen, try to obey, try to give them the help they need but my insides are ice cold, I’m freezing yet the sweat drips profusely leaving the sheets and myself sodding wet. I move, wipe myself dry and place the towel over the bed sheets, it’s all my energy allows, but it helps – until I fall asleep for half an hour or so then, again, I wake up in a puddle of my own sweat – my stomach cramps up, I lay ice cold in the foetal position knowing I have to move, knowing i have to disobey my body, I’m shivering, I’m not comfortable and I can’t lay amongst the dampness any longer.

I move to the lounge and I sit, I stare aimlessly into nothing and wonder when will this end. When will my body give me a break, when will it obey my orders and do what I ask. When will the sweat stop seeping through every pore of my body and give me a dry sleep??? I don’t ask for much, I know my body needs rest, but I don’t know how to avoid this symptom – the worst one of all, when your insides are like ice and you can’t but help to shiver, while the exterior has its flames on full blast and the sweat flows out of you…

It’s a lose lose situation – you can’t give your body the sleep and rest it needs so you sit, slouched back all crooked because it’s the only position your body will allow – antagonising your muscles further because they’re so out of alignment.

This is what it’s been like for the last few days but thankfully it’s eased off now – it really is the worst of the worst when it comes to all the symptoms CRPS brings and I wouldn’t wish it on anyone – except for maybe my dickhead of a neighbour…

Blue skies turn grey…

The sun was shining and the air was fresh as I got myself into the right frame of mind for the group pain management session this morning. The one hour journey gave me plenty of time to prepare myself, to try and rid myself of the low expectations I had and replace them with a bit of hope – after all, these were the guys who were supposed to ‘specialise’ in CRPS – that’s what I was told anyway…

Well, I have to say that it was a complete waste of time and pain. There was 9 of us in total, all with different chronic pain ailments and I reckon all but me were over 45, which only adds to the isolation I feel in living with this illness – I guess I was kind of hoping to meet someone of similar age and health but no luck there… We sat there as they explained the ‘Biology’ of pain, telling me nothing I don’t already know and not once mentioning CRPS…

The outcome was, we could either have one on one physiotherapy sessions or go through their pain management programme, teaching us how to pace ourselves and manage our pain in a better way. I’ve been here before with my last chronic pain team, minus the offer of one and one physiotherapy sessions – I tell you, the pain clinics here are not even worth their name. How the fuck am I supposed to manage this pain when I can barely put one step in front of the other because of the crippling pain and limitations – I’ve gone way beyond managing this, I need someone to find a way to give me a bit of relief and get back a little more mobility, but maybe I’m clinging onto something that will just lead to a fall – maybe I just need to accept my body is caving in on me and there’s absolutely nothing I, or anybody else can do about it… Oh, and if I were to choose the pain management approach, which I did, just to stay in the system of their department the waiting time is 3-4 months, ha ha ha ha, this is absolutely brilliant – what a productive morning that was…

When we left the weather had turned gloomy – the grey clouds hanging over us as we made our way home totally reflected my mood, one in stark contrast to the one felt early morning. I knew the journey would set my muscles on fire and I’m now home with butt cheeks that feel like they’ve been ripped to shreds…

I’m not sure where to go from here. My next appointment with the consultant who referred me isn’t until the end of July but in the meantime I’ll have to do some more research to see if there are any other options…

Contradiction of Empathy…

I forget how hard it must be for my closest loved ones to see me in so much pain. I realise I’ve been contradicting myself while craving empathy from others, yet failing to empathise with how hard it must be for them too…

When in constant debilitating pain, it’s hard not to let it consume you – you can forget who you are and notice less of what’s going on in your surroundings. There’s no getting away from it and the amount of energy spent just to get through the day leaves little room for much else. But, we have to change, we have no choice unless we want to perish from the over-powering bitterness and anger that chronic pain sufferers can become so accustomed to…

It’s only recently I’ve started thinking about how hard it must be for my loved ones to see me like this – seeing someone they so dearly love going through so much pain and not being able to do anything about it but comfort them. I’ve been completely blinded by the pain but now I see through it, and empathising with them has opened up my mind and got me seeing all of this from their point of view for the first time in three and a half years…

No words in the world can describe how thankful I am to those who have stuck around and done all they have for me – I am a giver and will never forget what you have done despite how miserable and snappy I have been. You have my empathy…

E-Mail to MP – Julian Smith – Skipton/Ripon – UK

Julian Smith

My name is Chris Stephenson, I’m 30 years old and I’m a resident in Ripon. In 2009 I had an unsuccessful Hip Arthroscopy where I developed a rare condition known as Complex Regional Pain Syndrome (CRPS) which has gradually got worse over time, spreading throughout my whole body leaving me house-bound for the last 3 years. As well as the constant debilitating pain us sufferers have to endure, secondary to that one of the hardest things to deal with is the lack of understanding the illness has leaving us open to a lot of prejudice.

Through social media I have met a fellow sufferer called Victoria who is a huge inspiration to me and has a website called ‘Burning Nights’ at chronicpaincrps.com. She is trying to raise funds to become the first registered charity in the UK and she, along with 7 other CRPS sufferers, knowing it would increase their pain levels, attended a meeting in Parliament organised by Iain Stewart. 4mp’s attended the meeting as well as 2mp’s assistants – unfortunately 2 representatives from the NHS didn’t turn up, which not only shows a lack of professionalism but the difficulties CRPS sufferers endure in not only raising awareness but the lack of understanding we crave.

The outcome was to set up an All Party Parliamentary Group (APPG) which is to raise awareness with all MP’s in every party in Parliament. Hopefully when the APPG has been set up around June time there will be a good number of MP’s who are willing to stand up for their constituents and also being CRPS out of the darkness so that more people can be aware of it… I would truly appreciate it if you could get on board with this as we really do need all the help we can get.

Many thanks and I do hope we can count on your support in this…

Wit’s End…

Well it’s been a tough few days… I keep trying to do something positive out of this situation but the pain always has a habit of sinking me further – I have no idea what is going on inside my body as it deteriorates and I can’t help but look forward to a bleak future… I nearly came close to deleting this blog through fear of droning on but the fact is it’s an honest account of me and my struggles with crippling pain, so if I come across as a moaning hypochondriac who should be dealing with this in a better way then so be it and jog on – I care not of your judgements anymore…

I’m bitter – I resent the fact this could have all been avoided – had I got the right physiotherapy after my initial operation I firmly believe I would not be in this position. But, the fact of the matter is, there is nothing I can do about that because all physiotherapists have their own way of treating people and his ego would have him believe otherwise… I’m frustrated because I have no control of my body – the smallest of exercises causes my body to fucking erupt and burn the living day lights out of me – this is hell on fucking earth and I’m not sure I can take it getting much worse… And… I’m angry… I’m angry because I have so much to give yet find myself here battling with the pain every second, of every minute of every fucking day – I am totally consumed by pain I have no fucking idea who I am anymore… I’m well and truly lost…

It’s getting to the stage where I’m needing a full time carer… I feel like I’m in a permanent nightmare – I remember when I was a little kid and I used to wake up from having a bad dream and that feeling of relief when realising it was just that, was amazing – and to be able to just go back to sleep and wake up all normal… Sigh… But this is very real – it’s getting progressively worse and the nightmare carries on and won’t end until I know 100% what is going on inside me – I can’t accept the CRPS diagnosis alone – my muscles are deteriorating rapidly and I need some one to see what I see and come up with an explanation that fits – without that I can’t see how I can move forward – what the fuck do I say to people – ‘hey, I’m a cripple but I don’t know why, I just am.’ This is the 21st fucking century for gods sake…

And please, I am not writing this for pity, the last thing I want is for people to tell me how sorry they are I just needed to get it out there into the universe and apologies for all the swearing…

Overwhelmed…

I’ve been really struggling with the guilt a lot lately. It doesn’t help that my pain levels are off the scale but that burdening feeling has been a damn nuisance to get shot of. It’s hard having to rely on other people so much and the help I receive from my girlfriend and closest family is overwhelming. I can’t get out to the shop, do my own washing, cook a proper meal other than a quick ding ding dinner as I can’t stand long enough and I’ve forgotten how to hoover as cleaning is completely out of the question. I’m realising now how obsessive I’ve been with cleanliness throughout my life and not being able to do it myself leaves me unsettled and agitated. But all this is just secondary to what’s going on inside my body and my condition seems to be deteriorating faster than ever now. I can barely get from one room to the other using my crutches and the burning is getting worse – it really does feel like a layer of my skin has been ripped off – on the pain scale an old 10 is now a 5 and it’s hard not to let that worry me, I can’t even begin to imagine what a 10 on the scale will feel like months from now…

I’ve also been doing a lot of research on my illness which hasn’t been easy – the more I’m learning about CRPS the more I’m realising how unlikely it is for a full recovery given there is no cure once it’s progressed and the lack of awareness and public funding means little research can be done – this makes living with the illness all the more harder deal with. If it was recognised for what it is – a crippling disease with immeasurable pain then at least the prejudice would be one less thing to deal with…

So over on a website called Burning Nights  Victoria is trying to establish the first registered charity for CRPS in the UK – she needs to raise £5000 in order for it to happen and I want to help in any way I can, so any ideas on how I can help raise money towards this from home (very unlikely I know) would be great – even if it was just a small amount. A fellow CRPS sufferer she met, herself and 6 other people with the disease also succeeded in setting up an All Party Parliamentary Group (APPG) which is to raise awareness to all MP’s at every party in parliament, I’ll be writing to my local MP to try and hopefully get him on board – she’s a true inspiration, you should head over to her site and take a look…

Okay, well thanks for reading…

The Snowball Effect…

Depression was the first layer of the snowball to mould itself firmly into place – it didn’t take long to realise chronic pain doesn’t come alone! It comes from nowhere and builds and builds itself on negative emotions, leading to a place of complete and utter despair…

When my pain first started it was nothing, a slight irritant maybe, but nothing else. I was working up to 80 hour weeks at work, on my feet, all day long, working two full time jobs at the same time – a clothes shop during the day from 9-5 then bartending at night from 6 till around 4 in the morning. The pain was there all day and night, gradually getting worse throughout my shifts but I was totally mobile and in complete control of my body. People forget this, I was a hard working sod and worked for 3 years in constant pain, chronic pain, then my operation happened and it’s never been the same since…

The depression came about two years after my Hip Arthrocopy (Key-Hole surgery) I wasn’t able to work during that time and it got to a point after being passed from here, there and everywhere, I felt I was starting to make some progress after starting studio Pilates. I’d got myself a new full time job as a support worker helping young adults with learning disabilities and was starting to look for a place of my own to live. I was so happy to have my independence back having been back at home the last 2 years since the operation and even more so that I could start paying my taxes again! Sounds strange but it’s true. I’d give anything to start paying them again…

I was into my third shift at my new job when everything changed. I helped lift a mobility scooter from the boot of a clients car, a damn mobility scooter of all things changed the course of my life, slightly ironic I may have to use one in the near future but that’s a different post, all this irony I’ve been noticing lately. Anyway, the scooter – something happened when lifting it down and the burning was back with a vengeance, meaner than ever with more volatility than I could have imagined. I tried to ignore it as I went about my day as the pain gradually spread throughout both of my legs and lower back with each step I took. I knew it was serious, I felt sick!!! The depression had surfaced and was preparing to ooze its evil nature right out of me, none stop!!!

When you realise you have become totally consumed by pain in every way and the depression gets more intense, the anger decides to join in and the snowball gets more fluency – you start to slowly notice, one by one, that you don’t have anywhere near as many friends you once thought. Nowhere near – they were all just temporary acquaintances with no solidity whatsoever. The lesson on society and its loyalty was one well and truly learnt…

Then the isolation sneaks its way in there. No longer can you do the things you once could leading to a lot more time spent alone. You either spend days off work sick pissing off your employers because they don’t understand or believe you, or you can’t work at all. People see you as a let down because you can’t stick to your plans properly having to cancel regularly, sometimes last minute. Feelings of Inadequacy prove overwhelming, the bitterness arrives, so cold in nature and the frustration can take its toll. With it all moulded together, it can fuck you up big time!!!

But we are all fighters and I think we are dealing with something a lot tougher than we realise here. It’s just we’re that used to it we don’t even know it. All this pain in its many forms has manifested itself so that it has become normal….