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…

15 comments

    1. Thanks for that. I’ll definitely make sure I won’t get fobbed off with a bog – standard one – I’ve had enough of the NHS fobbing me off. I really need one that works for me so I can finally get out of this flat for something other than hospital/doctors/physio appointments…

      Like

  1. As always I just love the lucidity with which you describe / express the nature of your illness and the struggle to keep afloat. Life can be a real bitch but, despite everything, you still show an ability to appreciate those transiently beautiful instants of music, nature, a smile or a “glint in the eye”.Just wish they could get on with some research, and real treatment, into the chronic illness with which you contend everyday!

    The sense of social isolation one feels when coping with any chronically debilitating illness is a tyranny which takes a great deal of courage to confront.. One instinctively strives to overcome this alienating chasm and in this regard, the internet / social media has proved to be a real godsend for me.

    Sending gentle cyber-hugs and prayers your way.

    Liked by 3 people

    1. Thank you, I’m really glad you like it… social isolation plays a massive part in my low self esteem but hopefully this wheelchair will help with getting me out more – it’ll be a big deal for me to be amongst people who new me of old in a chair – especially when most won’t have ever heard of my illness…

      The Internet has been a godsend for me too – I’ve noticed how much I’ve come to rely on it recently as it’s been playing up and been off more than it has on – no Netflix either – that too has been great for me in terms of taking my mind off the pain and sending me to another place…

      Thanks again for your support…

      Liked by 1 person

  2. Thoughts are with you today and especially tomorrow…wheelchair day! Hope you get just what you need and suits. I never stop being amazed by your courage and strength as you watch your body disintegrating and you can still share your thoughts and feelings with us all. This is a great privilege…thank you and all the best over next few days my friend…

    Liked by 1 person

    1. Thank you, I really hope so too – if I get a chair that I can sit relatively comfortable in, it really would make some things a lot easier for me. Maybe then I can start enjoying some of this sun we’re having instead of being couped up indoors all day – here’s hoping… Thank you for your message and continued support in this I really do appreciate it…

      Liked by 1 person

      1. Roll on the comfy wheelchair! Here’s hoping you get exactly what is needed tomorrow! Keep us posted my friend…Sun would be so good for you and just getting out…see some green open spaces, hear the birds, see people going about their daily business. I really really hope the news will be positive next time you write…got everything crossed for you…Best of Luck!

        Liked by 1 person

  3. It’s like reading all about me when I read your posts. I really hope that today’s wheelchair assessment goes well and this gives you some small relief. I also hope that by reading blogs by people like me you get that feeling of not being alone. I too have a good support network without whom I’m sure the reaper would have come knocking by now. But for all their love and support they don’t really understand the pain and the effects of it physically and mentally. I’ve found it so good knowing “we are not alone” not sure why the X-Files just popped into my head probably the opiates and Diazepam kicking me off for what ever today brings. 5am is a horrible time to be awake, but it’s actually a lay in for me these days! Best of luck!

    Liked by 1 person

    1. You’re so right – as much as they are there and try to understand they really don’t, which must be so hard for them and frustrating for us… It does help being amongst those in a similar situation – somewhat comforting knowing I’m not alone and have others that understand and can relate…Ha ha, yeah these meds can do funny things us can’t they! Just a shame they only seem to take a slight edge off the pain and not enough to be able to think straight and live and little – maybe one day there will be a miracle drug one to cure our ailments – here’s hoping… Thanks a lot for your message, mate…

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s