Another Suprapubic Catheter Gone

I already have NO WORDS to describe just HOW MUCH I Hate being Chronically Ill and Disabled.

But tonight… There was a Monumental New Low.

Turns out my Suprapubic Catheter has closed itself… Inexplicably, I might add… And That means am Screwed Six ways from Sunday… and then some.

I was supposed to be my routine catheter change; they happen Every 4 Weeks like clockwork. It’s Routine. This termed out to be a literal Living, Waking Gods-Damned Nightmare.

Two sets of nurses tried — bladder was in Massive Spasm. But after 2 hours of rest, of serious Meds, and the second set turning up after I’d done some relaxing things… I had to accept that there was NO Getting It In. It was DONE.

I’m in… Stunned Shock.

I feel sick to my stomach.

This will be the SECOND TIME this happened to me… And I’m looking at my THIRD procedure, in FIVE Years for it. The last one was December 2020.

These procedures are not simple; I have a bleeding disorder, Type 1 Von Willebrand’s Disease [VWD] (they REALLY need to change the name of that to “Disorder” …), and require Haematology to sign off on things before I go anywhere near anything. These procedures include blood tests for clotting and being given drips of a synthetic agent of Factor VIII [8] called DDAVP or Desmopressin, at exactly specified times relating to the procedure on the day, with the blood tests being ones beforehand, right after the infusion, and 8 hours later.

Other people would get to rock up to A&E and probably offered an overnight stay and be shoved into the next day's waiting list for a new one, because it takes less than half an hour and they're generally really simple things to do. Naturally... That cannot happen with me. There can be NOTHING simple about my existence in ANY WAY. 

I am PETRIFIED of Hospitals. Of Medical Professionals — with good reason. I’ll give ya, my other two Catheter Procedures weren’t so bad; but that’s not anywhere near enough to feel better OR safer about what else happened to me...

I’m now fully incontinent — AGAIN. I bypass into my Tena Pants, and I have to sit on Dry Nite Incontinence sheets. My bladder now is nothing more than a sieve, and unless it puts itself into spasm and retention, it holds Nothing. My Tena Pants are always Soaked Through. Quite often the Dry Nite is as well... BUT. There is No Way I can  change them unless - or until - unless my body physically. When I can, and do, change them, it is an Ordeal of Fatigue and Pain, and resulting in complete exhaustion... Regardless of the

I have NO IDEA what happens next, and I am Simply WHITE-HOT TERRIFIED about this.