CRPS

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…

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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…

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…

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…

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…