… Throwback Thought…
Today, I got a call from Urology stating that the Suprapubic Surgery I have been waiting Two Years For has been Cancelled — Four Days Before it was due (20th March 2020). Due To The Coronavirus Pandemonium.
This was after waiting One Year to see the consultant — on 14th February 2019 — then having to be forced through THREE Pre-Operative Appointments (the first being in May 2019) and a further consultation with Haematology 10 days before the surgery.
This procedure should have been completed by August 2019, when the first Pre-Op ran out. Instead, I had to wait an ENTRE YEAR just to get that Surgical Appointment. Which they have now just taken from me mere days before it was due to go ahead.
Now, I face untold amount of further waiting. And therefore, untold amount of further Catheter Expulsions, more agonising pain, more bladder spasms, more of my energy being drained and depleted even further than they already have been, further stresses and anxieties related to this, and no ability to basically go anywhere, lest it falls out whilst I am outside. If I had the actual energy to go. Or the lack of spasms and pain to go. Or, frankly, do much of anything, either.
First of all, the Catheter in and of itself is painful to have inside my bladder. Bladder spasms are Constant, extremely agonising, and are throughout the day, every day. During each spasm, the pain is so intense, I cannot breathe, and I cannot move. I have to try and calm my physical self down, otherwise any movement at all will result in immediateexpulsion of the Balloon. They can last from seconds, to a few minutes, to half an hour or more. It entirely depends on what it feels like. And with this, comes the obvious bypassing. And eventually, (or extremely rapidly!), the Balloon with inevitably get shoved out by all those spasms I am getting.
Whilst the Catheter is in, I have extreme difficulty moving my bowels. If I manage to go and move my bowels, and more often it’s when I do not, I also have to spend a long time in the bathroom – and almost always over an hour, each and every time – fighting with my body’s reaction to the Catheter, so as to ensure that it does not expel itself. Too often, I lose this battle, but every time I have to try.
More often than not, I cannot go and move my bowel for days on end — and it has nothing to do with the state of my bowel, and nor am I constipated. Instead, I cannot let myself pass stool on most days, because any stool that is extracted will take that Catheter right out with it. In fact, that happens so often now, it’s a 50-50 chance as to whether it’s a bowel movement or a bladder spasm that pushes them out. In So Many Cases… It’s the two of them Together, in Unison.
There’s also the problem that spasms meant for Peristalsis ends up being sent to my bladder and trigging spasms in there, causing the catheter to immediately be expelled if I don’t take immediate action. This has been going on since before I went to hospital for Sepsis – they were so bad then I literally would scream my lungs out. Now, it’s not quite that bad, but it’s still extremely painful now, regardless.
This issue with the strange interaction with my bowel creates its own [secondary] issues, obviously. Since the stool is technically capable of leaving, could be excreted, it seems ridiculous that I shouldn’t be able to manage it — but I am not willing to have my catheter expelled along with it. The upshot of that, of course, is a lot of bowel issues, because I cannot afford to secrete it if it’s going to also shove the Catheter out along with it.
The thing with that also is that I end up going 2 or maybe 3 times to the bathroom in a day, and often in the early hours of the morning – for instance, this morning I was back in from 3:30am until about 4:15am. I often pass out whilst I am there, usually from Exhaustion, and Pain. It’s a difficult, painful, draining trip for me to make, from my room to the bathroom, trying to crawl or drag myself there, then pull myself up onto the toilet using the bars set up for me, which takes a good lot of strength and effort to manage, because I have to hoist my entire body up there and place myself on the toilet, and come back off again, using just my arms.
The implications of the Catheter expelling is horrendous. It’s not straightforward. It’s not simple. It’s not easy. It comes out with the Balloon intact, each and every time. It triggers even more spasms, which are even more intense. Causes Retention. Becomes nothing less than Blinding Agony. It Requires Treatment in the shortest Possible Time, or it spasms shut.
And it’s (almost literally) happened too many times to count over the past Two Years — in some cases I have had more Catheters within a single month than almost everybody else has In One Year.
The problem is that as soon as the Catheter comes out, everything goes into a locked-in spasm around my pelvis — my Gluteus, the top of my legs, and my bladder — and it is Agonising. The Bladder Spasms then almost do not stop at all. If there is any amount of what is basically leakage from the bladder, it feels like acid, then I cannot breathe or move, like with all the other bladder spasms I get..
I have found out (to my detriment, and over many instances) that If The Catheter Is Out For More than Three Hours, it is almost impossible to get another one in. It requires high doses of extra Oramorph. To say this is Highly Stressful and Distressing is a damned understatement and a half. I hate it. A lot.
This becomes a big problem if a certain someone answers the phone there (and by that, I mean I literally don’t know who they are, but it’s always the same person doing it).. When my mother calls up the district nurses during the day (or even if I somehow manage to), and a certain person answers the phone at the District Nurse’s office, I am lucky if I see anyone that day, frankly. I do not know who this person is, since she has never given her name to me — but she is… Surly. Dismissive. Rude. Downright Actively Refuses To Listen. Doesn’t Take My Situation Seriously Whatsoever. One time, I was in tears because of her — I was Desperate for someone to reinsert the Catheter ASAP, but instead, I was very rudely told that I was fine and there was nothing wrong, despite my telling her several times I was in great pain and in Retention! If she is one of the nurses, I hope she never comes to see me. She is awful, insensitive, cruel and rude.
On that day [that I cried], I was pushed back in the queue so far down, and I was in Desperate Agony and Retention Long before anyone came. Despite first calling in at around 3pm with a Catheter Expulsion, she put me on the back-burner over and over, until I was on the Out of Hours List, and only seen to around SEVEN HOURS LATER.
It then took 20-30 minutes to get a Catheter back in, including requiring a total of 10ml (20mg) Extra of Oramorph to settle the Massive Spasms & Retention my body had gone into during that time.
The more the Catheter comes out, the more drained and exhausted, and non-functional from it, I become. This last time it came out, it was On. My. Birthday… at around 5am… I was seen to around 8:30am by Out Of Hours. The rest of the day involved anything but celebrating. Instead, on my 39th Birthday, I was upstairs in my room, crippled with the severe spasms and immense pain that comes with every new catheter, frankly wishing that I was dead. That is no way to spend anybody’sday, let alone birthday. And yet, that is my Every Day.
The knock-on effect of all this is Life-Changing. In a Very Bad Way. The Frank Truth is that I am Very Miserably, Permanently Housebound. All day, Every day. To Go Outside Now— it’s a minefield of balancing and battling a multitude of issues, other Conditions, medication, extra pain relief, Catheter Go-Bags, Extra Pads, and going only in reasonable reach of a functional 24hr A&E.
My Mental Health hasn’t just been affected — it has been Damaged Immeasurably… Or destroyed… My Confidence Just Vanished. Shame & Self-Loathing Runs Rampant. Utterly Depleted Exhaustion is a way of life. My Autism is permanently on a knife’s Edge of TMI Sensory Overloads and constant threats of Meltdowns, driven by the unknown, by chaos, by fear, by pain, by tumultuous things and never ending Extreme Stress. My Agoraphobia, BPD, and other Anxieties have flared severely and with a vengeance. My Depression is fully alive and well, along with despair and hopelessness. Once again, I struggle with my will to live… It’s too, too, too Exhausting to manage or even think about it.
The reason it quite often lasts more than a few days these days, is literally that I Do Not Move, or Gonywhere. Ever… Because I Just I Can’t. The result is that the lack of movement means the muscles around the catheter balloon are less likely to activate. It’s a double-edged sword…
And I shouldn’t be faced with either of those sides. Just trying to do anything, results in more expulsions, so I am forced to be as sedentary as possible, which I hate! The thing is, that if I ever need to do anything that involves a lot of effort, or moving around on the floor, it will not stay in. Not only that, but beforehand the pain and intensity of the spasms become immensely agonising.
It traps me inside a body that is already severely limited. Disabled my more than anything else does. Dictates Everything about me, my life, my family’s life… I am becoming Damaged and Traumatised by this, beyond repair. And yet, now, despite fighting So Goddamned Hard and being being So Goddamned Close… we have no idea If or When they might get round to doing this again for me…
Maybe Making This My Forever.