Monthly Archives: July 2019

The Heat Is On…

Showered In Pain

A Prisoner in my own body… Held Hostage by Agonising Pain, Solid Stiffness, Physical and Psychological Exhaustion. Why? Because I still do not have what should be a human right… A bloody Shower that I can use!

Just… Agony… It’s all I can think about… Because that is all that there is

The Pain is… Indescribably Excruciating. Morphine barely hits it now, it’s that bad.

I spent a week without it. That’s all. That’s it. And yet, it was enough to be an incredible, amazing respite. But you know what else happened? It was enough to learn to live without itMeaning, that when it came back, upon my return home, it knocked me out flat and winded me like a sledgehammer to the gut and the brain. And now I have to relearn what it means to live with it – more of a shock to the system than I ever thought possible before…

And to make it all the worse… The Worst Bladder Spasms I have had to endure for a while… SLAMMING into me, and so hard that I was left utterly and literally breathless… able to do nothing against this torrent, not even scream the agony… Just silently screaming as the spasms quite literally threaten the worst... Going on for what seems like Forever. There is also what seems to be a little blood in it. The entire thing is… Not. Good.

They’ve eased off now. For now. The rest of the pain, however, still alive and kicking… As in Kicking my backside, from here to Oblivion… It’s inhumane, overwhelming, and just simply Too, Too Much.

The worst, most Frustrating thing about it all is… I Do Not Have To Live Like This… This 15,000+ level of Pain [Score] plummets towards an incredible 7 (ish), whenever I am able to safely access naught more complicated than… A Shower. That’s rightOne Measly Goddamned Shower

I’ve been a Full Time Wheelchair User for just about two and a half years now. Despite that, I had a fragment of ability to weight-bear for up to about 3 seconds, and my abdominal muscles were on the (approx) 50% usable mark. The accessories put up and/or purchased for me as a weakening-yet-still-standing person sort-of still worked… Sort of.

Last March (2018), upon leaving hospital after making it through a serious Blood Poisoning incident, I had to start coming to terms with the fact that, quite frankly, there was very little of me that was actually still there. After the Occocuses ran riot and chased about inside my blood and bowel, they demolished everything below the sternum. I no longer had direct access to any of those nerves and muscles – meaning that there was no way I could even begin to control anything there, or make use of these small adaptations that had been put in before, since they required a certain amount of muscle control.

Upon leaving hospital, we requested that OT should be involved in helping me by re-adapting the house a little, particularly in regards to the downstairs Wet Room.

It’s now 18 Months Later and… Still. Nothing.

Not being able to shower… It’s not about [just] Hygiene, not to me. I can get clean in a multitude of other ways (not one of them pleasant). But what I cannot do in any other way is Get Effective & Instant Pain Relief.

Showers save me from the Demon’s Curse of Fibromyalgia/Fibropleiga.

It unfurls and relaxes intensely spasmed muscles, it melts stressed, pained, struggling intense muscle blocks. It allows genuine Relaxation, which by now, is an alien concept to me. It also saves me from having to double-down on the liquid Morphine that I cannot stand but otherwise have to take to simply… Not. Pass. Out.

I have been using – Wasting…?time, money, effort, Spoons, mental health, on having to go to hotels to get showers, when I cannot take the pain any longer. And it’s adding up, too… It’s now close to becoming impossible to mange this… And with the summer coming up, the prices are going to be going up right alongside it.

I honestly do not want to know how much has been spent on Hotels over these past 18 months… And how much in petrol to take me to these places… and quite frankly, even just the thought of it makes my stomach turn and the nausea rise in my throat, until I feel like I’m going to be physically sick.

At HomeAll is not well… I am stuck upstairs, trapped and imprisoned in my room by a body that refuses to work. I go weeks, months, without having a real shower.

I am cleaned by my mother using wet wipes. My hair is “washed” with Batiste, then conditioned with Aussie leave-in spray and Jojoba oil, or pure argon oil. And that’s only when I can actually tolerate it. Because I’m in so much pain, I cannot tolerate touch very often… and being ASD, I’m already pre-programmed to not be able to tolerate it, as it is.

I’ve just come back from spending a full week at my favourite Premier Inn (oh, yes, I have a favourite, and it is so, because they have the best shower and shower chair – and it’s a very, very Me-Friendly area, too). That was a full week without [Excessive, Soul-Destroying, Brain-Imploding] Pain. One full week of being back in control of myself, to a certain degree. One Full Week of of Real Super-Pain Respite.

With my mind cleared somewhat of The Super-Pain, I was able to use a bit of my own brain to do what I really wanted to do. I bought and read gaming magazines. I wheeled around and went shopping – all day – and even went out to Wetherspoons a few times. I went to Costa and Starbucks and Subway a lot. I did what I did, went were I wanted, when I wanted.

I kept my own space nice and tidy in the hotel room. I dyed my hair. Put on makeup. I did a bit of writing. I updated and caught up with my Journey Journal and Daylios. I frikkin Sang (not a lot, but I did it…!).

I even went to the supermarket right by the hotel on my own to get things that we needed, and did everything there all by myself!

I only needed my normal amount of Morphine. I didn’t touch the Boosters whilst I was there. I had absolutely no need for them!

The simple Freedom of it all was amazing. It was a true gift.

And.. Well… That’s that sad thing really, isn’t it? Basic Rights, like a bloody Shower, should be anyone’s given…. Not a gift. Freedom should be a Given. It’s not a “treat”to be had.

Surviving Trauma with ASD

My Story… My Life…

The Second Time My World Imploded into PTSD…

When I was 34, literally my entire world fell apart. I was so ill I couldn’t move and was in 24/7 agony from Fibromyalgia, and after 2 years of this illness and 10 years together, my partner snapped and she sent me home to live with my parents. Actually, she asked them to come and get me.

Just one random day. She stopped texting me. Then vanished. Never came home. I freaked the crap out. Turns out she went to her mums house. I had to track her down. And her step dad was a bitch to me on the phone.

Then she told me everything was done, we were done, and she wasn’t coming back until, I was packed up and ready to go.

My. World. Died. And. Ended. In. That. Moment.

She took the last remnants of things I had left — and I had already lost the career I loved and the data migration project I was just about to start. And destroyed them. Just one random day. Just like that.

It was nearly 4 years ago, this November it will be.

It was utterly sheer hell. I didn’t know if or how I was ever going to survive. I was delirious with agony and pain, screaming and blacking out from it every day, my parents were yelling at me, screaming at me, doing other bad things at me. I had several meltdowns per day. Everyday. The worst ever kinds. I used to come round to disaster and injuries I had no idea about constantly. It was horrendous…

It went on for years… I tried to OD twice. Was in an ambulance for it. It was a waking nightmare of exceptional proportions.

I don’t know how or why I am still here… But I am. And, frankly, I’m proud of myself for that.

And I survived long enough to get a very special person back in my life. And it’s in a better way this time too …. 🤔

So… I get it. I truly undoubtedly do.

And, also, that is how I know that others can survive this. Because I have, I do. We do. Cos we’re strong and kick ass and have to take far more than anyone could ever frikkin imagine. All. Day. Every. Day.



C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066


C.A.L.L. FOR Wales
🏴󠁧󠁢󠁷󠁬󠁳󠁿 Community Advice & Listening Line 🏴󠁧󠁢󠁷󠁬󠁳󠁿

🏴󠁧󠁢󠁷󠁬󠁳󠁿 C.A.L.L. I GYMRU — Yn Gymraeg 🏴󠁧󠁢󠁷󠁬󠁳󠁿
(In Welsh)

💜💝… With All The Love & Care That There Can Be… 💝💜

July 07, 2019 2:36 am

North Wales | 11°C


I’ve just seen the date at the top of this iPad a moment ago…

It’s 7/7 — the day things changed forever…

7th July 2015

14 Years Ago Today

And it will never “Just”… “Grow Old”… We were there. In the middle of it. SN was outside a few hundred yards away from That Freaking, Frikkin Bus… Maybe not half an hour after it blew itself up…

We watched it all as it unfurled itself on the news. Heard those Ambulances’ sirens dull on the TV as they raced further away from the scene… Only to get louder and louder outside my window on the way to the Trauma Centre in the Royal Free, Hampstead. It made it a chilling reality

The worst thing, however, was the fact that SN was inadvertently out there when the Tavistock Square Busexploded. The bomb had not long gone off, maybe only an hour or even half an hour. Entirely naïve of the situation, she had gone to meet her parents coming in to Euston from North Wales to see her graduation recital at Arts Ed.

If she had gone sooner, as she says, she decided to go take the mail upstairs to our apartment (Oakley Square, Mornington Crescent, Camden)  instead of leaving right away, she might have been there when the bomb exploded… Heard It… Saw It… Hopefully nowhere near the circumference of the shrapnel trajectory…

As she also pointed out, we would walk past there to get to town. If she hadn’t been having her Recital that day, who knows where we would have been. There’s a place close by we liked to have breakfast in, I’m certain. We could have been going there, done that… It all doesn’t bear to be thinking about… 😖😢😞

But SN was in Euston a little later, thank goodness… She says there was an air of something … wrong… there… But no clear indications — perhaps a fire down in the Tube line? That it wasn’t until I called her, she didn’t know anything had happened.

For me, it had been a very long nightmareto get hold of her. Phone networks were already being jammed (the cell phone networks in 2005 were still really in their infancy stage compared to now…), and I could not get hold of her. For ages… Minutes and Minutes… Which is forever when your best friend might be in serious danger…

I had known nothing was wrong until C (my sister) emailed me to ask how I was, if I was OK. I obviously told her I was fine and at home. And asked why she was asking. She told me to turn on the TV. Any. Channel

With that, my blood went cold and turned on the BBC… The first thing I saw was the fully exploded, destroyed and ripped out backend of the No. 30 Bus in… Tavistock SquareWhich was… Right. By. Euston. Station…. 😱😟😟😟😣😣😣😣😣😣🤯🤯🤯🤯🤯🤯😖😖😖😖😖😖

So, I flipped and started ringing her frantically, until I finally got an answer. And I nearly wept outright with overwhelming internal relief.

She came home — walking bravely despite all the horrors going on…

Her parents had been Evacuated back home from Watford Junction Station anyhow, and all Central London was in a serious Lockdown.

From then on… Well… It just go worse and worse. We were glued to the TV to get as much information as possible about it all. It. Was . Fucking. Terrifying

SN got quite serious PTSD from it… After all, she was thereThat is one seriously Majorheadfuck…

She seems to know how to deal with it well… She has a really, really powerful internal Strength of Will, and bears such a burden with dignity and Strength, despite the Fear and heartbreaking anxiety anything that triggers or reminds her of it… She still carries it with great Power and Grace, in my eyes. 

Not many people understand this. Her parents were kinda there — after all, they themselves were evacuated from London on the train, not being able to get hold of SN and know if she was OK. Not sure if they ever did grasp the reality she was near enough to have been kinda involved in it, too, if she’d have gone any earlier, though….

So, every 7/7 we talk about it. Discuss it. Get our Trauma and Anxieties out to someone who can commiserate and empathise truly. We went through that together. We still go through it together.

The date brings things to the fore too easily, the memories still vivid despite pretty much an entire Decade-and-a-Half having come and gone hence…

It. Just. Hurts…

Powered by Journey Diary.

JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞