housebound

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…

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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…

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…

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…

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… 

House-bound…

 

 

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In being house-bound there is no joy – only sorrow when looking back at the old distant memories. There’s only so much you can do to suppress the boredom before the thoughts start to play with you… 3 years have gone by and it doesn’t get any easier – in fact quite the contrary; more days wasted, more memories lost and more friends have have disappeared… There’s so much time to dwell when sat amongst the same four stale walls and a box I’d never watch were I to be well… Chronic pain has completely changed the course of my life and struggle has become my middle name… There is a tiny little light far away in the distance but it’s not always there and those days are the worst – when darkness is all you have and you’re unable to free yourself for days and days… And the good days – they are few and far between and are to be cherished… P.s – this picture isn’t mine…