Sometimes
Boredom, pain and thinking got the better of me tonight, and I ended up drinking. Then writing.
When it comes to writing features, I usually have an end in sight, some kind of aim, something I want to say.
Tonight, though I just wanted to try to empty my head a little…
Drunk
I decided to get drunk tonight. That’s not something I do often – maybe only once, twice tops, a year. I decided to buy a litre of alcohol and take my camera down the road (see images at the bottom of the page), get drunk and take some photos.
It’s another beautiful, sunny evening, and I was hoping to get some images of the sunset. But, it was too early for that, and I wasn’t going to spend an hour hanging around waiting for the sun to sink in the sky, so I took a few pictures, drank the booze I took with me, and started thinking.
Maybe feeling is more accurate.
Feeling things I’ve been trying to ignore, thinking things I’ve been trying to not focus on. None of them can be changed, so what’s the point in focusing on them?
Then I decided to come home and write – something I’ve done since I was six years-old. My outlet, I guess.
I don’t have anyone I feel close enough to to talk to, open my mind to. Some may read this and see it as self-pity. To me, it’s simply venting. If you don’t like it, click on some other site or features.
To those who decided to keep reading and have read my other pieces, I apologise for any repetition that may occur here. I can’t be arsed to go through Down or Grief to ensure I’m not saying what I’ve already said.
Granted, straddling and wriggling around on the man I talk about in Filthy didn’t help matters, but multiple orgasms and his heavy breathing were
worth it…
I’m fucking bored because every day is pretty much the same – aside from seizures and pain levels. Two weeks or so ago, I sat on my bed cross legged for ten minutes, a voice in my head saying not to sit like that because my pelvis won’t like it and the twenty year-old pelvic injury that hasn’t healed (thank you, Ehlers-Danlos Syndrome) could well flare up for fuck knows how long.
Did I listen to myself?
No.
Granted, straddling and wriggling around on the man I talk about in Filthy a few days ago didn’t help matters, but the multiple orgasms and his heavy breathing were worth it…
And now, here I am, with my pelvis still driving me insane and refusing to stop hurting.
What drives me more crazy, though, is that it didn’t have to be this way, and Professors Grahame and Pope were certain they could fix this injury within six weeks. However, my NHS Wales Trust acted illegally by refusing to fund that treatment programme while offering no alternative in Wales.
I can still hear the voice of one particularly twatty consultant proclaiming flippantly as I left his room “By the way, your pelvis will be fixed within six weeks.”
How fucking wrong he was.
If I could go back and beat the shit out of him for that, I would, as worthy of the assault charge as doing so would be…
I know I’m far, far luckier than so many people on this planet. I have a fully accessible bungalow (not that I go tot choose where to live because so few such properties are built), I can see, hear, I’m not paralysed.
I have food in my cupboard and fridge (if I can move to prepare it and when my digestive system allows me to eat). My senses of taste and smell may have abandoned me due to uncontrolled Epilepsy I developed and my NHS Wales Trust fucked up (for which I am in the middle of suing them), and I’ve opened my eyes covered in blood with a black eye from being dropped by a seizure, but I m still far more fortunate than millions, if not billions, of other humans.
Does that, though, mean I’m not allowed to vent?
And what, exactly, am I venting about?
Even I’m not sure sometimes…
Potential
One thing is the potential I had. By the time I was 26, my salary was what would today be £48,000. I was offered a pay rise and my own department.
Granted, I decided to leave the city to focus on raising a child, but had my NHS Trust not chosen to break the law, I could have gone back to my career.
Instead, all I studied and worked for, fighting worsening pain to do so, went down the drain.
And now?
Now I am so fucking bored.
I am so fucking bored of spending day after day trying to find ways to fill my time that won’t increase my pain to dangerous levels. What do I mean by ‘dangerous’?
My ongoing pelvis injury and pain gets bad. So bad that talking and breathing hurt. Over a decade ago, it nearly killed me. I’d heard that pain could kill, but I didn’t understand how…
...Until it was me.
Lying in bed, the agony had spread up from my pubis symphysis (where your pelvis meets in the front) and each breath was agony. Having endured a few years of this, mainly stuck in bed unless I was enduring it to see to my child, my brain decided it couldn’t take any more and started shutting down my circulation.
Every breath became torture, and as I felt a numbness spreading through my limbs towards my torso, I lay there thinking calmly ‘So this is how pain kills you’.
The middle of the night, I was able to call a neighbour who had a key to my house. Unable to talk, I just gasped down the phone at her, and she came over, expecting to see me on the sofa downstairs. Instead, she found my house in darkness and me in bed, trying desperately to keep breathing.
She dialled 999, and paramedics soon arrived, pushed some IV morphine in to my veins and carted me off to a local hospital, where doctors spent six weeks scratching their arses as they told me they didn’t know what to do with me as I was too young to put in a residential home.
They could have supported the Professors., internationally renowned EDS specialists, opinions, but they didn’t.
And now, here I am, nearly two decades and an unwanted abortion later, spending every fucking second of my waking life trying to avoid that drastic and dangerous pelvic agony again, while also trying to keep myself happy and grateful for what I do still have.
It’s not always easy, though, and sometimes, just sometimes, I find myself filled with a quiet rage at it all.
I could go into more detail, but I Have a law firm waiting for paperwork in case we can persuade a judge to ignore the Statute of Limitations and grant me permission to sue my NHS Trust – while I’m also in the middle of another law case against them linked to the Epilepsy I developed in 2020.
I’m fucking sick of it all.
People
Perhaps, though, what pisses me off more than all the physical things I deal with is people.
In 2020, the person I would open up to most died, and I found myself up to my eyeballs in grief.
During the aftermath of that, I found that so many people I’d supported and helped were nowhere when it came to helping me through that difficult time, and they just continued treating me like a font of all knowledge, a bottomless pit of empathy and emotional support.
It led to me knocking around 200 people (mainly from the EDS community, but including some I’d known personally in actual, real life) off my Facebook friends list.
Six years later, I’m still emotionally divorced from most humans.
I gave £50,000 worth of work free of charge to EDSUK and persuaded that charity to change
their name to EDSUK...
Some may say it’s the Autism in me, to which I would disagree. It’s from learning the hard way that you can give and give and give, and not get a fucking thing in return – even when you need it most.
It was, though, in part, my own fault.
Kind of.
Conditioned at a young age by a truly narcissistic mother and an older brother who I recently contacted and reminded how he would repeatedly tell me to kill myself and who knocked me about with a hoover pipe (he blocked me rather than reply and apologise – big man that he is…) to be the one to provide emotional support before I was equipped to do so, years of Ehlers-Danlos research made me put myself in the position where I wanted to help others.
In many ways, I still do – but on a far less personal level.
I gave £50,000 worth of work free of charge to EDSUK and persuaded that charity to change their name to EDSUK based on my prediction an international network of EDS charities would develop (as it has), and I started #YouSeeUs (the hashtag being part of the name before hashtags became a thing because I predicted they would become thing).
Then I looked around when I most needed support and realised I had none. I just had a large group of people who still wanted to suck the fucking life out of me.
So, I dumped them.
No words of warning.
No discussion.
And while I still slap on a superficial smile and lend a listening ear to some individuals I cross paths with in real, physical life, I find myself not really giving a single shit for many individuals because it’s not reciprocal – and I’m done giving to those who only take.
But, fuck me, it gets lonely…
Mortality
The older I get, the less life I have left, the more I look back, look around, and the sadder I feel.
What the fuck is happening to humans?
Is the online world a good or bad thing?
I started working in online companies when people smirked and balked at the idea of the internet. When they said it would never amount to anything, that it would never take off.
How wrong they were.
I still have an ambition to help other, but on a general, anonymous level, rather than personally.
What the fuck is happening to humans?
Is the online world a good or bad thing?
Since 2023 I’ve collected examples of ableism (in the UK) across various sectors of society, with the ambition of writing an editorial special about this form of discrimination.
I hope that what I end up writing contributes to positive change. So far, I have seen some improvements. For example, in UK charities.
Ableist charity marketing is huge issue. It needn’t be. It’s easily fixed. My studies at the UK’s first and most prestigious School of Journalism taught me the importance of semantics, and over the years, I’ve learned about the true power of words.
Asking simply questions has made some prominent UK charities (like the Samaritans and the PDSA) change their marketing, and I keep commenting under ableist charities’ social media posts with threatening questions. I’ve collected many adverts and posts which will be include in the ableism editorial special I’m planning.
I just have to finish rebuilding youseeus.org, get a survey for disabled people up online, then start writing, and I can fuck ableist organisations up the arse, dry – metaphorically speaking.
Helping people in an impersonal way, rather than counselling and comforting people personally is all I jut about have energy left for.
And if I’m going to die soon, I must try attaining a goal I had since I was six years-old and started writing on a turquoise typewriter – helping people. Helping society.
Even if it’s just a tiny, miniscule contribution.
I’ve got to still try, right?
I haven’t been spending cash on numerous domain names for the last decade to just do nothing with it all now.
I just can no longer bring myself to care about people on a personal level in the way I used to.
I just can’t keep giving like that.
Though I’m well aware that many people with access to my personal social media see me as some kind of ‘strong’, cold, gobby personality.
What they don’t see or understand is that I avoid personal interaction because I’m fucking sick and tired of being kicked in the teeth, of looking around and finding nobody when I most need support.
Instead, I keep writing posts using language many deem ‘strong’, no longer giving a shit what other think of me, while secretly being a right softy who sheds many tears, deals with many fears alone, and still harbours ambitions of helping others I don’t know and will never meet, making some sort of positive difference before I die.
That’s not to say I don’t often just wish I had someone to cwtch* up with (*look it up) and watch a movie with after having them fuck my brains in to an orgasmic puddle…
Remaining emotionally detached from all humans (except the one you birthed) isn’t easy.
Of course I would like to feel emotionally close to a human I did not build and birth. I just don’t see how that can happen. Obviously, that’s likely a trauma response to the numerous forms of abuse I’ve experienced since I was a small child.
It’s also something I don’t know how to change, given the increasingly superficial and vacuous direction humans are moving in since the growth of social media, and how tired I am of giving to humans on a personal a level.
Given how tired I am of this fucking world and this fucking body which limits me so much, in so many large and tiny
ways.
Maybe I just need to find a way to remain grateful for what I do have.
But am I not allowed to feel angry and frustrated at my pain, limitations and disabilities sometimes?
Am I not allowed to sometimes get drunk, despite the stupidity of doing so because of Epilepsy, and just ramble, wish I felt genuinely connected to someone on this forsaken planet?
Am I not sometimes allowed to wish for someone to shore me up...
...Instead of being the one so many turn to
for support?
