Last night, before I turned my phone off, I did what I always do, and checked social media, especially the instagram account for this profile. Low and behold, I had messages. Not unusual, but peopole had reached out to me looking to talk. I welcome these messages, because I know what that isolation can feel like -the lonely thoughts in the middle of the night, the wanting to talk, heck – scream, and no one there to listen…
It was during a hospital stay way back when I was first taken ill, that a consultant asked me how I was doing, what my life goals were, and then told – well, you have x, y & z – here is a chemo tablet, good luck, and see you in six months… I attended my main doctor everyday for about the first two months. It became a running joke that he seen me more than his wife. He so became my closest friend, my confidant and the person that when I could bearly stand or walk, rang my consultant and for want of a better word, fucked him from a height.
So, when I see that my profile is having an impact, I am so grateful, because it reminds me that on days like today, when my own body has had nothing but arguements with me, when consultants registrars have yet again pissed me off and pecribed me stuff without giving me the actual information on it and doesnt realise the impact the stress of not actually being able to get my hands on the drug they have perscribed because one idiot 200kms away, hasnt talked to my GP is beyond frustrating.
For all spoonies, chronic pain warriors, and those who go through life with no one to speak openly with – I am here, and I will listen, because I know what that lonely place is like, how hard it is to open up to people who keep telling you how great you look, when on the inside you fell like death would be the only option where pain doesnt exist… so anyone out there suffering in silence, break free… open up… fuck the stigma – we are here, we need researchers to come up with a cure and find us a way to live again – normally!