Well the nights are drawing in and the air is icing up – it makes the muscles in my legs feel all sharp like there’s thousands of pins stabbing them all over – I’m truly dreading winter this time round – the change and deterioration that’s happened over the last year has been huge and the colder weather is felt so much more due to the lack of blood flow I have in my legs. It’s been a tough few days here and I’ve found myself to have lost the plot again – it’s a familiar place I know will pass but this needs to stop! I hate myself when I lose control of my emotions – the lack of control I have over my physical well-being is causing me to lose control of my mind. I work so hard to get through each day and even harder at improving the quality my frame of mind is in, but it’s so easy to lose it all in just a single moment and wind up back where I started.
There are no expectations for my sympathetic nerve block that’s scheduled for the 2nd of November. If I get a little relief for a few weeks then great, but I’d be a fool to expect anymore than that. If it stops me from being in so much pain caused by the journey there and back then at least there’s something. Some might say that’s a negative approach to take but it’s the safest – one thing I’ve learnt is not to build your hopes up too much ready for one almighty fall when things don’t go as you tried to believe.
I’ve had very little inspiration lately but i’m determined to keep this blog on the go. I’m unsure of what to do with it though; keep it as it is? Post chronic pain articles and research I come across so I post more? Make it less personal and more of an info site? It’s hard because I’d be lying if I said I didn’t want lots of traffic – after all we need as much awareness for CRPS as possible, and who doesn’t want thousands of people reading their work and stopping by a website they’ve created. I certainly do. The more people who see it means more chance of making a name for yourself as a writer – it must feel good – maybe I’ll write about it someday.
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…
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!!!
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…