As the early light of Friday morning broke through the damp cover of night I lay in bed counting the minutes until my Drs practice opened. The pain in my lower back had been agony all night and I suspected my ongoing UTI had progressed. After a night of no sleep 8am couldn’t arrive quick enough.
By the time I arrived at my doctor’s for my 11am appointment my temp had hit 40.3c and I was in urinary retention, my heart rate and blood pressure were through the roof. I can vaguely remember being encouraged out of my wheelchair chair and onto the bed whilst they phoned an ambulance. Shivering with fever chills, and desperately tired. Three hours later I was in the back of an ambulance on my way to the hospital.
I don’t think I’ve ever seen A&E so busy. The staff were amazing and after quickly establishing my veins were playing hide and collapse they had an ultrasound out to guide them. They hooked me straight up to antibiotics for an upper kidney infection and told me urology would make me a plan.
Saturday morning three burly Urology consultants appeared at the end of my bed. “What would you like us to do?” The question caught me offguard. I’m rather used to staying quiet and listening so as not insult god complexes, or putting my thoughts across in a tonned down manner. When I explained I’d be happy to be guided by them, it was really refreshing as they took the moment to explain my options. I could that day under local anesthesia have a suprapubic catheter put in: this would involve a small incision in the tummy allowing them to put the catheter through and to the bladder. Alternatively I could have an indwelling urethera catheter and go home, to come back at a later to have the suprapubic catheter put in under a general. I chose the latter option giving them a brief explanation about my Ehlers-Danlos and how due to EDS you can pump me full of local but I’ll still feel everything. They happily accepted my decision .
Back in 2019 whilst pregnant with my daughter I’d agreed to surgery where they attempted to remove a large suspicious mole from my breast without pain relief or sedation due to the pregnancy. The local failed. I felt every cut. The team did their best to distract me but the whole thing was traumatic. I made the decision at the time to not put myself back in that situation ever again. So even though the suprapubic catheter is meant to be better long term I’m happy to wait a few extra days/weeks for it if it means they can put me under.
So why has this all happened? My guess is that it’s down to the Ehlers-Danlos. My bladder has been dodgy for well over a decade, it’s just recently sped up in its decline. I’m feeling a little emotionally up and down, frustrated mainly but I think it’s healthy to acknowledge that. I know this will all feel normal soon.
*On a side note if you use catheters and have any tips on making it more comfortable please get in touch!
Dystonia and Me 