For SOME of us… There is NO SUCH THING as “JUST” An Appointment. One Thing about Disbled, Chronically Ill People that NOBODY seems to GET, is what and how much doing ANYTHING takes out of you. So when you’re forced into someothing a LOT bigger than say, breathing, or moving less than 2 feet from “here to there” in the same room, it absolutely, utterly ANNIHILATES EVERYTHING that is You.
Hyper-Fatigue is... A Living Nightmare. Where you're drugged up to the eyeballs. With the Hangover From HELL. After clearly being turned into GRANITE, somehow.
And instead of Air in the Atmosphere, the world has turned to super-thick, cold, custardy-porridge, and you're forced to move through it... In THAT State.
This is DAY 2 after going out. The Pain & Paresthesia is turned up to 1000. There’s a horrible Buzzing vibrating right under my skin. I can’t see properly becuase the wort FND symptoms are Screaming at me and the hazy film and swimmy vision is a big part of it. Those are probably two of the most annoying symptoms. There’s even less dexterity, more tremours. I can’t take my meds; fel so nauseaous and then I aspirate on them because I’m too weak & WRECKED to concentrate properly. That’s not even the half of it.
There is NO SUCH THING as “JUST” An Appointment. It takes SO much more than what I have to give, and so takes Days - maybe weeks - to get back what I lost from it. IF I ever do.
Sometimes I don’t... And they all burnt me into a New Baseline; a New, Horrible, Nightmarish “Normal”…
I didn’t sleep the night before. Barely a couple of catnaps, and two or three full BlackOut Seizures before that. And in the days and weeks prior to it, I had the very same experience. I went there not even running on fumes - just Pure Stubborness, Adrenaline and Fear.
BetweenThat AND having being FORCED to barely Exist with AWFUL, Distressing, Debilitating, Dehumanising, Demeaning, and Severely Damaging Full Incontinance for over Two Months ~ already... This was a LONG-awaited Pre-Op appointment... ONLY by THIS POINT — I was barely functioning, it had been SO long since this started...
In fact it came just shy of a week after the Two Month Anniversary of my Suprapubic closing up.
The last time I had to have the SP Catheter RE-insertion, on the URGENT List, it was in the middle of the COVID Pandemic, December 2020 and nearly Christmas.
Within JUST SEVEN WEEKS they had me BACK into surgery already, all fixed and sorted.
This is the NINTH WEEK and this time, and I only JUST had my Pre-Op ... No Pandemic... And at this rate, I'm freaking starting to wish there WOULD Have Been - which is bordering on Clinically Insane, but is actually SO JUST GODDAMNED DESPERATE.
Because THIS is NOT ANY kind of ANYONE'S definition of “URGENT”...
It took Six HOURS to Leave The House at 12:30pm, for a 2pm appt. I’m already TOO Exhausted To Move even at that point, so I have to grit my teeth whilst someone pushes me to the car.
Then an hour’s drive, to make sure we get there with enough time to park, to get me ouo wherever we were going. By this time I’m struggling with consiosness and the BlackOut Seizures are right there, humming in the background and growing in intensity.
Out of the car, the Autistic Masking gets going. I don’t even have to try after all this time. But it IS Draining and Fatiguing to the point of Heavily Exhausting.
The waiting room isn’t full, but it was NOISY. The TV has been left on and there was still a lot of activity. I hid in a corner, but it didn’t really make anything better at all. But at least I didn’t have to wait long. First it was Blood Tests and an ECG. They also took my blood pressure… They probably shouldn’t have.
My BP was 163/100. I nearly broke the machine.
That’s what you get for forcing someone outside to a Petrifying hospsital appointment that’s a draining car-ride away, who has to Mask to DEAL with Being There, and for whom every breath and movement is so compoundingly OVERWHELMINGLY EXHAUSTING... Doesn’t help being 100,000% Agoraphobic about everywhere outside her bedroom.
Then, Exhasted even more afterhaving to transfer in and out of a weighing scales with a chair -- and I told them I specifically di NOT want to know. My Anorexic Brain wouldn’t be able to take it.
I wasn’t able to eat or drink anything - between Dysphagia, Nausea and the sick feeling in the pit of my stomach, I wasn’t going to be managing anything of the kind.
So… Recovery is going to be SLOW… IF I recover. After all, I am this bad because there were times that I Did Not Recover — AT ALL.
I won’t be given much of a chance though… In One Week, there’s another trip to Liverpool. To a Premier Inn there, for a week. Booked before the Catheter closed up and for a hospital appointment. …. AGAIN.
There will not be enough time to rest up before having to gear up to go back out. AGAIN…
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