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 it… Meaning, 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 right… One 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 Home… All 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.