Disabled & Vulnerable
Beyond Exhausted, Beyond Wrecked... and although Finally had the Surgery I've been waiting for - the question is, at what cost was the wait to me and my family...?
As a Disabled Person, especially quite a severely Disabled Person, nothing can make you Quite Feel As Utterly Vulnerable, Lonely & Alone as literally having No One To Help You Do Anything. In Fact, You’re The One Doing The… Doing. Even though you shouldn’t at all BE Doing The Doing, and yet you struggle HARD to do it, anyway. And Anything that I can’t do… Just Doesn’t GET Done.
So, what SHOULD be Good News Is That I’ve FINALLY just had the “URGENT” Suprapubic Surgery I’ve been waiting 4½ MONTHS… and I’ve come home to “Recover & Recuperate”.
Supposedly.
Supposedly? …??
Yeh. Because in Reality, I’m doing Even MORE now, than I was when I was suffering all those damned months — despite having just had surgery.
Why, you may ask? Well, that’s because I’m the only one left in the entire household [bar a miniature Jack Russell with MAJOR Diva issues] with a body still [vaguely-ish] working … Therefore, I’m currently stuck in a household of Very Sick People.
Yep. Me — the one who’s Post-Op.
Came back from the hospital to discover that my Father had caught COVID [STUPID! COVID!]. For the second time, but that first time was back in 2021. A couple of days later the penny finally drops in my head that the reason my Mother is struggling around isn’t just the extra stress of having to get me sorted for the procedure… She’s got a damned Bad Head Cold.
I figured it out too late. My Mother was soon an almost pitiful wreck, and eventually banished from my Room, but it seems that it’s hopped ship to Lolli [aka my lifelong Best Friend, who shares a rather large room with me… but hardly large enough to really be of use if she has it as well…]
Background: Lolli is someone who literally keeps me alive; I live for her, choose life over suicide for her, because She Has Been Through Enough [trust me] — and she is NOT going to be Losing Me, too. She came to live with us because she wanted to help take care of me when I was REALLY ill [coming home after being hospitalised with Septicaemia & Sepsis], and stayed because she was someone who was also disabled and needed Real Support, not a Blood “family” who vilified her, demonised her, and used her as a scapegoat…. This was actually the third or fourth time she’d lived with my family now, due to having known each other since we were 13yo, and her having an unbelievably rubbish family…
I admit, despite having almost Zero sensation in almost any part of my body, whether it moves or not, there’s a strange… small sensation in the bottom of my throat… which could mean just about anything. It better NOT mean the same as it does with the other people here… I can ILL AFFORD such a thing to happen to me, now.
That also means I have to tend to Lolli the best I can, as well… Which is nowhere near as good as it could be, but I’m hoping I can help just enough to make it through this latest Clusterf*k…
What also doesn’t help, is the Horrendous levels of Bladder/Bowel Spasms I’m now experiencing, after the damned Surgery. The Sheer 10++++ Intensity to the point of Screaming, is causing neck, head and back pain — even more than before.
I’ve been Physically left in an UTTER STATE after the wait time and struggles between losing and re-gaining a Suprapubic Catheter.
I’ve been left Too Exhausted To Move Much At All, Too Exhausted & In Pain To Drink or Eat, Too Physically WRECKED to manage to physically eat anything or concentrate on safely and consciously drinking, unable to self-care AT ALL; can do a LITTLE Bit for Lolli, unable to find or even focus on any distractions such as Gaming, Reading, Writing [Fiction], in FAR TOO MUCH PAIN to focus on ANYTHING. Even More.
There’s a Ridiculous Irony in the fact that Because I EXTREMELY Dehydrated, I can’t even drink properly, if at all — to help myself start to get better. I spent the first 3-4 days just going through nothing but what is now an unfortunately familiar circumstance, which is one of “BlackOut Cycling” — i.e: Overdone, Overwhelmed BlackOuts/Functional Seizures/ [P]NES, after what I’d been put through — this time: before, during and after the surgery. Because of this, not much drinking — or eating — was going on. After all, vague consciousness did not bring the safe levels of Lucidity required to attempt drinking and/or eating — not with this severe level of Dysphagia I have. Otherwise, I’m too Wrecked, too Overwhelmed, too Exhausted, too Befuddled… Too DONE, to manage ANYTHING. AT. ALL.
I’ve tried disassociation by playing SIMS 4… and it kind of worked, for a few hours. After that, I had to struggle with a few things, including helping Lolli.
I have NO IDEA how I — the post-surgical one — am the last one standing. So to speak.
But then I think about it. and it is all about being reduced to Survival… And that’s all I’ve done My Entire Life, since a very small child — fight for my own Survival. A lot of the time, Alone, like now. I don’t suppose it’s any wonder it Just Happens, and I think nothing of it. One again, I have no one to rely upon but myself, so it’s just automatic pilot to get back to it, I guess…?
Either way… It’s costing me more of my own health, in a different way. Whatever Spoons I worked HARD to save before going for the surgery is already WAY Overspent on doing all these small or medium things that somebody else would have done if it weren’t for all these stupid illnesses. I’ve had to look after myself and Lolli since I’ve come back from the hospital… It’s absolutely WRECKED Me — Again. I can barely move myself to adjust positioning of sitting, and it’s not as often as it should be. BlackOuts are Ferocious but there’s no one to try and bring me round up from them.
By catheter isn’t draining properly, even after a week — but is it any wonder if I’m not even clearing 900ml Per Day?? And HOW can I do that if I’m Unconscious or Barely Lucid… Or (more dangerous) have no/not enough focus or concentration; because these are the times that I DO Aspirate and then I have NO Puff or Exertion to get all the fluid back out of my lungs again… Meaning I’m left in a marionette heap unable to even sit up and with a throat so raw I may have been screaming loud enough for Scotland to hear me, Or a I’ll have a chest infection the next day because I didn’t get it all out properly and it’s started festering in there (again; not for the first time, and not by far).
I have NO Energy, No Focus, No Concentration… Ergo No Dinking Or Eating, until I can give it the concentration is 100,000% Requires Just To Make It SAFE.
Unless I get some Lucidity, focus & energy back from Not Having To Do Everything Myself… I am not even going to start recovering from the last 4 months, the surgery, or what my body keeps being put through since.
And once again, I’m left really wondering… In making me wait all that time, in the broken, wrecked state I was and am still in…
What. Have. They. Done…??
