It’s not about living anymore, it’s about surviving. I’m dying on the inside, and it has to stop. My grandmother always used to say “tell the truth and shame the devil.” So I guess it’s time to shame that arcane, evil bastard.

I wish, just for once, I would allow this inferno of a pressure cooker inside me to just explode, gushing out a scalding geyser of everything that’s making life pretty helpless, painful and empty, in a glorious maniacal onslaught. I wish I could tell you what a shitty existence I feel I’ve fallen into, through no fault of my own, and how deeply and unavoidably unhappy I currently am. I wish I didn’t have to hide this disease, often for the preservation of others, often to appear normal and healthy on the outside. I wish I wasn’t so good at applying and wearing undetectable makeup with the only purpose of giving me the appearance of health and glowing vitality. I wish I saw a bright future ahead of me, with exciting adventures to seize with unquestioning, open arms. I wish I didn’t often see potential love – and even the world – casually pass me by. I wish I didn’t crave the love of ‘one’ so intensely. I wish I wasn’t alone. I wish I didn’t daydream about a life with my very own beautiful children, only to shed many a tear over the children I will never have; that’s one of the things that hurts me the most deeply of all.

I wish I could grab a bag and run out of the house at five minutes notice because a friend surprised me with a weekend away or just for a perfectly spontaneous dinner date. I wish I didn’t promise to join friends when I’m invited to do something incredible & life-changing, or just invited do something wonderfully everyday, like going to the shops and laughing at silly things. Or being asked to travel the globe and feel the sand between my toes… because at that very point they asked me to join them, I knew I had already broken my promise before I even said yes; because as naïve as I am, I always believed there was hope, and I might be strong enough/well enough to make it, maybe next week or in a month or two. In reality, that’s rarely the case. Hope now seems more akin to a malevolent entity, or a cruel mistress. Now, joyful excitement feels too much like fear.

There’s more, so much more I could say. However, I can’t; doing so, in my naked and raw truth, and to completely lay oneself bare, is an impossibly. In doing so, I would alienate the few friends I have left, because nobody wants to hear that, and really, no one should. So I censor my self-pitying self and psyche, so not to rock the boat, to keep things nice and neat and sterile and reliable, as its always been. Heaven forbid I might appear a weirdo, a freak, a depressing force that will only drag you down. I can’t post certain ‘arty’ photos I take, because some find them uncomfortable and read too much into them… and then ask me if I feel suicidal, which I do not. If art provokes an emotional response, even if that response makes one uncomfortable, doesn’t that mean the art is doing its job? Anyway, isn’t that a little irrelevant? Think about it.

There’s very little left of me these days – even I miss the old me. I’m dying on the inside, and I’m so desperate to live again. Despite my all the shattered pieces and shards of razor sharp glass strewn at my feet, I still have so much love to give, and to give freely, unconditionally. This existence has to stop. My worry is that there might only be a handful of straws left, and my back might already be too weak…

A Short Jaunt

After my medical stuff was sorted, today we made a trip to Penarth and the Cardiff Bay Barrage. Pictured above are;

– circular art installation on the Cardiff Bay barrage which only becomes visible at one stage;
– a plaque explains Weston is just across the water;
– a view towards Flat Holme and Steep Holme Islands on the Bristol Channel;
– a view over Cardiff Bay from St. Augustine’s Church, Penarth;
– country lane journey home.

jayneysgotagun:

It’s Fibromyalgia/ M.E and chronic fatigue syndrome awareness day! I hope you all have a low pain day, remember even the smallest thing you do today to help raise awareness makes a difference. Even if you just wear something purple, post a status, tell someone what fibro/me/cfs is and how it affects you or you could just share any of the photo’s I post on here today to your friends
The bigger the audience who see them the more awareness we raise 😀

Be hurt, feel sheer pain, and then you can learn how to be a writer

This is for those who dream of being a writer.

To be a so-called-writer, you have to be hurt. You have to experience pain at its best. You have to experience being burned down by cold flames and be frozen until the air you exhale composes only of fragments of ice. You have to get your heart broken. As though a bridge had just collapsed into you and tore all your arteries apart. Your chest needs to explode, to burst with tears and black and white. It has to suffocate you, it has to steal the oxygen that you breathe. You have to be depressed. With the birds and crickets that sing of bittersweet pain. You have to be in ruins. Like a skyscraper being caught in fire. You have to be shattered into million little pieces. Who would have survived the explosion of scars and wounds, anyway? You have to be alone. With the air, with the wind. You have to be a monster, a beast that eats up his own. You have to find pleasure in pain itself. You have to jump off a cliff. You have to keep your troubles and problems close to you, for you are going to need them. You have to close your eyes. You have to die.

And then after being dragged down to the deepest, darkest abyss imaginable by those things like they’re gravity… You have to defy gravity. You have to fly and float away and be with the stars. You have to escape reality and start living with dreams, with fantasies, and with the impossible. You have to drown yourself with tears – with words. You have to paint words and write stars.

You have to love.

This is Paul Harrison on living with Fibromyalgia and Chronic Fatigue Syndrome. He’s been living with these invisible diseases for 20 years. I’ve been living with them for about 12 years. I cannot believe how similar our stories are. It’s rare for men to have these illnesses; yet it’s so strange how almost perfectly his story mirrors mine. I’ve been planning to do my own video on living with CFS/Fibro for months but I haven’t had the time, energy, motivation or confidence to bare my soul to the world as Paul does so courageously. I think I will record my experiences one day soon, but in the meantime, please listen to his words until the very end. They will give you an insight into my life – and his – until I record my own experiences. Thank You Paul, so very much.

Here’s an update to his first video:
http://youtu.be/lH7NafrC7RQ

Invisible Diseases Series: Contributors Wanted

Posted from: Vale of Glamorgan CF64, UK
Yes, I have an invisible disease. Well, several actually…

Many readers of my blog may not realise that I have lived with a condition for over 10 years called Chronic Fatigue Syndrome (or CFS). It is more commonly called Myalgic Encephalopathy (or ME) in the UK. I was diagnosed with CFS in 2002 after contracting the Epstein-Barr virus (EBV) and then developing Chronic Mononucleosis that lasted for an exhausting 6 months or more.

I want to start an ‘Invisible Diseases’ Series, and would love to invite you to share your experiences here, on this very blog. If you have CFS/ME, Fibromyalgia, POTS, Lyme Disease or any other invisible disease (see Dr. Dolan’s FAQ’s below), I would love for you to be a featured contributor. You can email your article or story to rycariad@gmail.com for publication to www.rycariad.co.uk

I can’t wait to hear from you. In the meantime, I’m going to be brave and share my story for the first time very soon…


Further reading:
Dr. Franky Dolan’s FAQ’s:
www.invisiblediseases.com/FAQ.html

Other useful information:
www.findfranky.com
www.actionforme.org.uk
www.meassociation.org.uk
www.foggyfriends.org

Submit your own link to:
rycariad@gmail.com