Poetry

Hopes, Cares and Dreams…

I still dream, I still care and I still have hope – these are the words that have been missing, lost and totally non existent in my vocabulary due to the demonic nature of this damned depression, setting up home in my weary mind and rapidly taking over every single cell of my body. There has been some good spells, where it has let up and given me a break, but, all in all, it’s done a pretty good job of changing who I am…

I know what causes it, it’s the pain, the chronic pain, the CRPS, the isolation, the limitations, the dreams or the lack there of, the life of a groundhog, lack of help and understanding, the worry and the fury. As I’ve said before it’s a snowball effect, a never ending one which has powers you never even new existed. It feeds and feeds itself off your sanity, consuming all emotions in the process as it lives in its own little paradise, while for me, it’s hell on earth and all that’s left is shattered dreams…

I’ve really been trying to see the future differently of late though. Having been left with a massive increase in pain from my pain-management appointment a week ago it seems as though I’m back to square one – back to dealing with this away from the healthcare system and working out how to manage this on my own. There’s absolutely no way I can do this pain-management programme considering the sessions are 3 hours long, as well as the hours car journey there and back! I’ve seen physio after physio trying to help me get my muscles in order, each time making me worse. It seems the CRPS has truly set in stone all over my body preventing me from building my muscles up. So now I’ve finally been looking towards a future as a disabled citizen riddled with pain as opposed to a healthy drifter living life to the full…

It’s difficult and it’s scary but this is my reality now and I have to come to terms with it. I’m not sure whether any progress has been made but I feel I’ve dealt with this huge increase in pain a lot better than I may have done a year ago – only time will tell how I’m getting on but my aim is to dream again, care more for my life again and find some hope for a future of happiness…

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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…

A Trip to Pain-Management and an Increase in Pain, the Irony!!!

It’s been a few days since pain management and I’m still paying for the short trip up there and everything else that goes with a hospital visit. We were probably waiting for about 45 minutes before we saw someone – standing the whole time was a struggle and the left leg isn’t happy but there was no way I could get down on the chairs. They could probably do with some perching stools for the crippled that can’t bend down. Everything seems to be so low these days. So frustrating!!! Anyway, my lower body, particularly my butt cheeks, are on absolute fire, fire, fire…

They’re sending me to a clinic a couple of hours drive away. They have more experience in dealing with people who suffer with CRPS so hopefully something good will come of it. Can’t help thinking that if my body is feeling this bad after my last appointment, how is it going to take to a much longer journey but, fuck it, we’ll just have to wait and see. The irony though. Of going to pain-management, only to be left with a huge increase in pain for days and days afterwards. But, I’m just grateful the ball is rolling with this new pain-management team and I have something to focus on. I’m curious as to what they will do that others haven’t. I have a little hope…

So this ‘pledge’ I mentioned in a previous post – Its made me more focused for sure but when you’re exhausted from just taking a bath, and your but cheeks are on fire, legs ice cold, morale is really hard to find and the question of, ‘What’s in store for the future?’ starts to creep in, then the anxiety tries to rip you in, your stomach starts to churn and your heart pounds harder. It’s unstoppable when it comes and I’ll never get used to the sinking feeling it gives but I need to keep fighting this… I can’t give up hope!!! I’ve done that before and it’s no good for me or anyone around me…

Endless Nights…

And on these dark nights, when everything is black and you can’t fall asleep, time literally lasts forever!!!

With little distraction the sleepless nights are the worst part of the day for me – It’s when the thoughts run wild and time doesn’t move, your body is aching for rest but your mind is in the fast lane, while everything is quiet yet loud at the same time!

I hear the odd sound of a car passing by in the distance or the slam of a car door but other than that just silence… Then you’ve got the battle of having all the noise inside your head while you lay there, trying for the life of you to sleep and trying so much to resist as you count sheep or exercise your breath, only succumbing to the thoughts every single time – constantly thinking of this, that and the friggin’ other.

Nearly everything I do is a distraction for me and stops me dealing with my chronic pain. I watch t.v (takes my mind off it) surf the web (do people even say that anymore) play FIFA, read books, make endless amounts of coffee and get lost in a good film. Even with all this distraction the fight against my health is still a massive struggle, so when it’s the middle of the night and all this distraction has gone, and all that’s left are the thoughts mulling round and round in my head, it all becomes very intense and the fear of the unknown increases ten fold. Then I wake up and the anxiety hits straight away turning my stomach. I have to get up…

This journey is crazy and I have more soul-searching to do than I could have ever possibly imagined. But, I’ll get there…

A Pledge…

We pledge to be better people… Day after day we’re faced with new challenges – some that don’t take a second thought and others that take great pleasure in trying to destroy who we are… I have no idea how I’m going to get passed the challenges which have led me to this blog – one of constant physical pain, isolation and frustration, but the fact of the matter remains; I either accept the here and now and try to shed some light on what is, or I perish having opted to take 10 steps back after having fought so much to take two forward… My choice…


You see, we live in a world where people love to see you fail, it makes there own self indulging prophecies all the more tolerable and their failure of fulfilment that little bit easier to bear… But we’re given the chance to learn and grow, be true to ourselves and make right all that we’ve fucked up on in our past. We’re given the ability to find our true selves, despite the poison we are faced with in society – from the pathological bigoted liars that rule our lands, to the tarnished bullies who troll through life, shooting people down to make themselves feel better… Their choice… 

We all have choices to make when challenges arise and I pledge to make mine count…

War Inside My Head…

I’ve got to get away from this war inside my head,
I’ve got to get away from these eyes built behind enemy lines,
I’ve got to get away from this war inside my head,
Get away, get away.

Free from the voices going against my instinct,
Free from the voices brought on by pain,
To trust the fight between uncertainty and sincerity,
Abundance I’ll gain.

I’ve got to get away from this war inside my head,
I’ve got to get away from this mortal coil and the rage,
I’ve got to get away from this war inside my head,
Get away, get away.

Free from the thoughts that have become habit,
Free from the thoughts that leave me static,
To trust the shimmering light breaking free from my weary mind,
Than valour I’ll find.

It’s a battle I’ll fight all the way,
A battle I’ll fight with all the cells in my body,
All of the atoms, pores, synapses, limbs, veins, thoughts, feelings, pain, humour, will, love and faith.

I’ll dig myself out of the trenches,
I’ll remove all the scars that remain,
I’ll kill, kill, kill all the negativity,
All of the pessimism, hate, anger, jealousy, rage, fear, nerves and bitterness.

I’m going to get away from this war inside my head,
I’m going to get away from the haze that sees no future,
And I’ll relish every fucking second of my being.