I AM [STILL] AWAKE. AND I AM SERIOUSLY MESSSED UP.
Another Diverticular Flareup for Lolli. Vomiting. Catheter Needed To Be Flushed. More Vomiting. Been up since 7:20am and before that up most of the night anyway, napping on-and-off. Isobars already causing Fibro Flareup & Fibromyalgia, Paresthesia giving me Major Sensory Overload...
There's been nothing but Pain, agitation, distress, anguish. I've been struggling to move a body that can't move to try and help Lolli, who is engulfed with Pain and prone to Vomiting through the day. It's thrown up terrifying Flashbacks of what happened Christmas, and before.
Our Bodies Are Not Temples; They Are Cursed Tombs.... Empty Spaces Encapsulating Tortured Dead Souls for no other reason except they need somewhere to... Be. And Somewhere nobody living wants to come anywhere near...
Starts at the bottom... 7:20am yesterday.
End up being up over 26 Hours because of this in the end...
a. I'm STILL Awake ... And I cannot DESCRIBE HOW I am Feeling... I'LL TRY....?
ANTSY - ANGRY - FRUSTRATED - ON-EDGE & TENTERHOOKS - EXTREMELY SUPER-MAJORLY MEGA TRAUMATISED - FLASHBACKS - SHAKING - WIDE-AWAKE - "RUNNING" HERE THERE AND EVERYWHERE ALL DAY FOR LOLLI... JUST MAKES ME FEEL UNABLE TO RELAX OR CHILL OR ANYTHING... JUST ON EDGE, MAJOR HYPER-VIGILANCE & HYPER-ANZXIETY....
IT'S FUCKING HORRIBLE AND I JUST ABSOLUTELY WANT TO SCREAM AND CRY...
MAKES ME FEEL TRAPPED INSIDE MY BODY, IMPRISONED IN MY OWN SKIN... AND I CAN'T Do ANYTHING ABOUT IT.
I AM IN SO MUCH FUCKING PAIN IT'S RIDICULOUS...
I've been trying to write a letter to the Nurses about what happened last week LETTER TO THE NURSES IN THE MINDSET I AM IN NOW -- SPEAKING AS THE "PERSONALITY" WHOM THEY ARE HARMING THE MOST...
Wrote a complete MESS of a letter to GP/District Nurses. It's Finished Now. They're fucking WELCOME to it.
01.44AM 24/04/23
Lolli woke up suddenly and started Vomiting her guts up [and sneezing like there was no tomorrow - a strange but constant symptom of Retention]... 50ml has been drained since the last Catheter Flush... AND. SERIOISLY. I CAN'T COPE. I'M NOT OVER THE LAST TIME THIS HAPPENED....
I am in STUPID PAIN. AND DONE. AND IN TMI... IN SENSORY OVERLOAD. IN AUTISTIC BURNOUT.
THERE'S NO BRAIN-SHUTDOWN TIME. THERE IS NO OFF BUTTON. THERE IS NO SLEEP OR EVEN A BREAK. IT IS FUCKING RELENTLESS. I'M ALWAYS "RUNNING" AROUND LIKE A DEMENTED HEADLESS CHICKEN FROM ONE THING TO ANOTHER. DOING EVERTHING SHE NEEDS BECAUSE SHE CAN'T MANAGE IT.
I H AVE TO BE CONSTANTLY ON-THE-BALL. CONSTANTLY MOVING ABOUT [...SOMEHOW!!]. I HAVE TO BE READY FOR VOMITING, OR A REQUIEST AT A MOMENT'S NOTICE.
... HELL -- I AM SOMEONE WHO NEEDS A CARER, NOT BE ONE(!!), AND IN A SITUATION THAT IS PROBABLY AVOIDABLE.
I don't think this would HAPPEN if they did Properly Controlled Changes Every 4 Weeks like they're SUPPOSED TO. LIKE SHE FUCKING WELL NEEDS...
23.45pm - 23/04/23
I Just Flushed her for the THIRD time. It went straight in with minimal bypassing, meaning there was *almost nothing in her bladder.
Almost nothing drained in past four or six hours...🤷🏻♀️
It's been a Clulsterfuck Day.... But Still Wasn't Expecting To Be Coming Back from the Bathroom, after being there for nearly an hour, and nothing's happened with Lolli's Catheter's Draining ... It's looking like the Diverticular FlareUp attack has broken the Catheter again...
It's Now Been THREE flushes JUST TODAY and I'm getting Pretty Much NOTHING back - she can't even drink now.
STRONG Possibility Need Emergency Change Tomorrow... Her face is swollen and drooping on the left again, and left hand has basally a hemiplegia. It's bad...
She Can’t Drink — she's nauseated and too scared to in case she's sick, which is what happens when she has to go through this...
Shouldn't be a shock given no drinking. But she's ballooned and definitely has a swelled and drooping face. Which isn't good.
I'm half blacking out, Zoning Off. & Having Difficult, Realistic Hallucinations that freak me out... Exhausted. Drained. WRECKED...
COMPLETELY TRAIN-WRECKED
20.43pm
Flushing Lolli Again... Not draining right, still ... Left arm Hemiplegia-type problem (poss due to too much fluid around somewhere that matters) & has BAD Headache...
She perked up after Two BIG Bowel Movements... So something in them was Toxic 🤷🏻♀️🤨🫣 Caused a FlareUp...
Urine is thick-ish & dark; she hasn't much, but she's drunk enough that this isn't right...
18.45pm
Lolli has finally been sleeping... Real Resting... And I'm Just Too Wound Up & Agitated after being back & forth Relentlessly, all day... I can't DO Anything for myself. I sure as hell can't be thinking of food -- I am Literally Utterly Wrecked.
By 5pm, Lolli had finally taken some of her painkillers... And The Crime Show marathon in the background for her agitation has been turned off by her request, now... And I am SO OVERDONE I am Blacking Out -- somewhere between TMI PAIN and the Sensory Overload I didn't even know was there until I turned the video off...
16.54pm
Lolli has finally been sleeping... Real Resting... And I'm Just Too Wound Up & Agitated after being back & forth Relentlessly, all day... I can't DO Anything for myself. I sure as hell can't be thinking of food -- I am Literally Utterly Wrecked.
Had to wake her up in the end -- but it was worth it because Lolli has finally taken some of her painkillers... And The Crime Show marathon in the background for her agitation has been turned off by her request, now... And I am SO OVERDONE I am Blacking Out -- somewhere between TMI PAIN and the Sensory Overload I didn't even know was there until I turned the video off...
I haven't had a Second To Myself... It feels like the minute I might try... She needs me again, and it's constant. So I can't chill and I haven't since the early hours of the morning. It's Physically and Mentally Draining... Being A Carer when You Need One is... Something Else Altogether.
It's been a long afternoon... Lolli seems to at least not be getting worse, might even be getting better... I'm Just DRAINED, EXHAUSTED, TIRED... I Am In PAIN -- like STUPID PAIN...
14.12pm
Had to flush Lolli to make sure it's doing right cos it's being weird I think after Diverticular FlareUp 🤷🏻♀️...
Lolli is bypassing & having Spasms... And vomiting fluids....
Still no rest... Lolli hasn't been back to sleep, been restless, agitated & needing things... So, further chances to try and be OK...
She is hot and cold and can't settle... Sounds like it's been and gone and Waiting for Recovery Sucks...
Mam’s not been nice since she came in this morning and gave me a huge anxiety attack... Acting brusque, rude,demanding, like a 1960s Matron and I was her Skivvy Auxillary...
She's gone off out now so I'm by myself here with her agin... .
She's had her most important Meds, but nothing else. Not even the painkillers.She's had her most important Meds, but nothing else. Not even the painkillers.
09.43am
Lolli Vomited again, about 20 minutes ago... I've had to get out of bed now, to the floor, cos I can't help her being next to her on the bed... I'm ALREADY Exhausted & In AGONY... I'm SO Not OK To Go Through This Again.... Universe needs to FUCK. THE. FUCK. RIGHT. OFF. AND CHANGE ITS GODS-DAMNED TUNE....
Found out it was from her Catheter Leg Bag being FULL UP and therefore she was in Retention ... Which Equals Vomiting -- Every Single Time.
Had to get out and find Night Bags so I could Drain Her. It was PAINFUL AS HELL to get out of bed, to the floor (it's maybe 6 inches, at a push...)
Then she needed a clean dress on, because she'd been in it a couple of days, perspired heavily in it all night, and now had some Vomit on it, too...
Wasn't able to help her sit up in time -- she threw up outside of the bag from not holding it properly... Got it a bit on herself and then struggled to sit up with me...
She threw up on my dress, too, so I've had to not only help her get new clothes, but get myself changed, too. That involved going deep-diving through the bit Sea-Horses Laundry Bag I keep our spare clothes in, on the end of the bed.
Mam came up with clothes from her pile outside, instead cos I wasn't finding anything suitable for Right Now for either of us...
Got the Dress off, but.... Just Don't have the puff to even put a dress or skirt/top combo back on. In Too Much PAIN, from it all, too...
After going through the Sea-Horses Bag I have to then, put them back in -- because I'm literally buried in clothes after looking for something, anything. I can barely do that... So I'm Not Dressed Yet. I'm COLD because Lolli needs the fan on. COLD makes the PAIN Worse, too...
... So I'm in catch 22 now, having been frozen into MORE PAIN I can't really DO ANYTHING ANYMORE, NOW. Just Cannot Even Move.
Stuck. Screwed.... Too Fucking TIRED To Even THINK. Not even AWAKE this time, usually(!!
7.20am
Lolli Vomiting Again... Been REALLY ILL All Night. BOILING, restless, in Pain... HERE. WE. GO. AGAIN... Those couple of months before and after Christmas will always and forever be carved into my brain with a Blood-Hot Chisel.
Thing is she ONLY Slept before i has to get her up for Making Meds — and that's literally the same as Every Day 🤷🏻♀️BUT It's NOT good when she's poorly, like now.
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