Housebound

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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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!!!

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…

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….

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…

Friends Like These… 

Ive known her since I was 5 and I’d class her more as family than anything else. But, as with many other relationships that have faded over the last few years this one is turning out to be no different – that’s twice we’ve arranged for you to come and visit, and twice I’ve not had so much as a text to let me know what’s going on… I’m beginning to find it easier and easier to cut people out of my life these days – It’s like it’s second nature to me now!!! I’m that absorbed by the pain all the time, I’m caring less and less about anything else and friends like these is one of them…