Category Archives: sad

Catheter’s Curse Forced To Continue…

For more than Two Years I have endured my Catheter’s Torment… And I came So Damned Close to escaping it this week… Instead, I get to endure its strange ways for even longer now.

There has been nothing but Blinding, Brain-Exploding, White-Hot, Agonising Pain for Days

I have had no sleep for three nights straight — awake all night through solely from blinding agony and extraordinarily constant, non-stop, Bladder Spasms.

The pain wouldn’t even allow me the vague comfort lying in bed. It forces me to sit on the floor, shaking and yelling in agony… For hours and hours on end. If there is any reprieve, it means the pain is less (and in no way gone)… But I still cannot move.

I am constantly Blacking Out — completely losing consciousness, from a few moments to several minutes. This is what the agony & the exhaustion of this situation has done to me. I have even suffered with these episodes for several hours before. They’re frightening. These come from the immense and combined effects of having to endure constant blinding pain and the sheer physical exhaustion of dealing with sleep deprivation and enduring insane levels of Agony that hits nowhere near the 10-Score Pain Scale.

These Black Outs are not just “dropping off”, like you might do if you’re a “bit tired”... It’s not like sleeping, not at all… You don’t even know you’re going off; certainly have no clue if you’ve gone. Coming round, though, is an absolutely Horrible experience…

Upon being roused — which usually can also take a while — I always end up struggling greatly with temporary full amnesia anywhere from a moment or two, up to a lot more than several seconds… And when (not ”if”) it takes a really long time for my existence to come back to me, it’s Freaking Terrifying

Arguably, the really worst part of this problem, is all the Hallucinating. More Vivid… More Real… Than Any Dreams I’ve had… Enough for me to believe they really are real, whilst both experiencing them and even for some time after being roused. It’s one of the biggest reasons I have no idea about any conscious reality when I open my eyes

I cannot argue any of this is new… In fact, that it isn’t, is the entire point… And that it should no longer be occurringbecause I should already have a Suprapubic Catheter by now, meaning

NONE OF THIS SHOULD BE HAPPENING…

Devastation

Five Days Ago…I was supposed to FINALLYGoddamned FINALLY!! —  Get my Suprapubic Catheter Installed…

I was SUPPOSED TO Get. My. Goddamned Life. Back. At least a little bit

However, instead of managing to figure out the First Steps of living with a Suprapubic… I end up in even more Dire Straights than I have been for a while

Quite Frankly, it is unconscionable… And Being So Goddamned Freaking Close to that Finishing Line… Neither my head nor my heart can truly bear it or Process It And What makes it worse is that since then, there has been blisteringly blinding white-hot agony from the Bladder Spasms like nobody’s business…

This should have been concluded by last August (2019)..

But! Not because of the Disppointment — I wish it was, quite frankly!… It’s because that just at that specific time (ha! The time I truly needed that goddamned Suprapubic to be in…!!!😳🤬😤),  two things turned up that really really would have gone So Much Better  if I’d had the surgery before having to deal with those two things…                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      


My (Nightmare) Catheter and I…

… 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 intenseI 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 4:15amI 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 AgonyIt 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 AgonisingThe Bladder Spasms then almost do not stop at allIf 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 WhatsoeverOne 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 wrongdespite 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 inincluding 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 AgoraphobiaBPD, 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.


October 01, 2019 3:47 pm

Glan Dulyn | 11°C

I talked to Mam. A lot. When she really puts her “Momee Hat” on, she manages to completely disassemble things that completely baffle and “Bewilder” (her word; a very good word…) into perspective, in a way that is so proficient and clear, I am able to file it away or use it in my own… Analyses. 

This time… It was BPD – but ALSO… She answered the biggest head-fuck of my life: The BEWILDERMENT, TORMENT and UTTER & COMPLETE MIND-FUCK of just how I went from My Life In London to… Well, THIS

And it ALL started — NOT JUST THAT — with… ASD.

Or rather, the lack of willing support, understanding, help, kindness, patience, and Diagnosis of it. NO ONE KNEW. 

 

And from the beginning… Basically…

 

I Was Born To Die.

To Suffer… 

To Be Tormented…

To Fail.

I. Never. Stood. A. Single. Chance. In. Hell…

 

The lack of everything I ever needed for ASD was NOT THERE.

 

Instead, I became more and more terrified, confused, befuddled… AND TRAUMATISED > THAT TRAUMA CREATED BPD, in a child who became terrified of Abandonment, of the Emotions that Erupted because of it that SHE DIDN’T — COULDN’T!! — EVER UNDERSTAND, of the confusion that NEVER EVER MADE ANY SENSE… This list keeps going on, and on, and ON…

I. WAS. ALWAYS. DOOMED. TO. FAILIURE.

And everything spiralled from there.

No one was able to stop my Nightmare Crucible from happening when I was a child.

There was no one there to tell me to go to the Docs to seek help before Pneumonia started… or to stop me from doing what I did afterwards whilst I had it.

I had to leave Finsbury Park and the only person who could & would have done that… 

There was no one there to help me in Leyton when I got sicker & sicker… The NE London Foundation Trust was just as sick as I was

There was no one to help me stop the BPD from taking over, the sicker and sicker I got, or to keep EDI Online… Because NO ONE HAD A GODDAMNED CLUE ABOUT EITHER OF THEM…

And so… There we go. Here we are. Biggest Question Now: What to do with said information? Obviously, it’s a new Filter, for nearly pretty much Everything to be processed through.

Processing the Data will take time… That’s a lot of crunching, even for a Supercomputer(!). I’m not Quite Quantum… Yet…(!)

#resentment #uncomfortable #personalinsights #trauma #uncertainty #scared #confused #overwhelmed #sad #mam #disassociation #illness #selfawareness #cptsd #pain #aggitated #panic #terrified #anguish #miserable #helplessness #exhaustion #waitingfordoom #upset #crushingfeels #disturbed #mixedfeels #independence #asd #depression #ptsd #imprisonedfeels #mentalhealth #disability #stressed #anxiety #selfcare #memories #inspiring #despairing #alexithymia #aspie #hypervigilance #bpd #skittish #distressed #caredfor #paranoid #drained #fatigue #vibratingscared #grief #chaos

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September 21, 2019 2:39 pm

4 Glandulyn | 23°C





I Still Can’t Quite Process This…

Borderline Personality Disorder

It is Imperative to know… However…

ASD, Alexithymia, perhaps even BDP Itself, disallows me to be able to manage to process anything about knowing it, understanding it, or thinking about progressively accepting & researching this…

Well… No there’s problem Accepting it… It explains everything OTT inside me that ASD just doesn’t do to that extent. Like the Alexithymia takes lack of emotional understanding to a whole new level. 

Disassociation. Extreme Fatigue. Confusion. Exhaustion. Traumatised & Demoralised. Therefore… No chance of processing something so big & shiny-new…

But… I guess it’s the same rules as ASD and the Lexi… These thing are an “is” — the symptoms, the effects, what it does to your brain… Then figure out “workarounds”… Right…?

The other thing is… Formal diagnosis or not? The ASD was mind-blowingly life-changing. But this…? When it’s a co-morbid secondary issue, I’m not sure if it’s really worth it. There’s nothing they can really do about it, is there…? Well, I mean, not for me… Specifically. Not in general. Other people can take the treatments listed. But I cannot. 

The information alone lone is worth more than anything else. Easier to fight or control an enemy you’re not only aware of, but know everything about. 

What to do… This is tough one. It should be a no-brainer… But after my life, my life-experiences? Decades of everything going wrong when it comes to these things… I’ve been burned so many times, inside I’m more like a crispy corpse. I’d have naught but scar tissue everywhere from the burns. I have no space left for more, now.

I’m kinda done with formal NHS Metal Health, now. Including this, possibly. Probably? It’s still a Question-Mark. Maybe it’s important to have. Or at least to know. For certain? But it’s a weird psychological issue again, and again another debated about everywhere. Not understood properly.

Might it bring more understanding, more relief, like the ASD one did? That there’s a “Name” for all this terrifying, horrific things inside me that lash out and terrify my ASD & Alexithymia more than half to death? 

I hate these questions. I hate that they even are questions. I used to know the answers before they were even posed. 

I’m not here. And I am terrified…

#uncomfortable #weird #personalinsights #asd #exhaustion #fatigue #anguish #researching #helplessness #sad #aggitated #drained #alexithymia #frustration #bpd #stressed #anxiety #disassociation #selfawareness #uncertainty #upset #disturbed #distressed #pictures #feels #confused #drowningfeels #suffocatingfeels #research #overwhelmed #panic #tmi

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Borderline Personality Curiosity…

| 23°C |

I Still Can’t Quite Process This…

Borderline Personality Disorder

It is Imperative to know… However…

ASDAlexithymia, perhaps even BDP Itself, disallows me to be able to manage to process anything about knowing it, understanding it, or thinking about progressively accepting & researching this…

Well… No there’s problem Accepting it… It explains everything OTT inside me that ASD just doesn’t do to that extent. Like the Alexithymia takes lack of emotional understanding to a whole new level. 

Disassociation. Extreme Fatigue. Confusion. Exhaustion. Traumatised & Demoralised. Therefore… No chance of processing something so big & shiny-new…

But… I guess it’s the same rules as ASD and the Lexi… These thing are an “is” — the symptoms, the effects, what it does to your brain… Then figure out “workarounds”… Right…?

The other thing is… Formal diagnosis or not? The ASD was mind-blowingly life-changing. But this…? When it’s a co-morbid secondary issue, I’m not sure if it’s really worth it. There’s nothing they can really do about it, is there…? Well, I mean, not for meSpecifically. Not in general. Other people can take the treatments listed. But I cannot. 

The information alone is worth more than anything else. Easier to fight or control an enemy you’re not only aware of, but know everything about. 

What to do… This is tough one. It should be a no-brainer… But after my life, my life-experiences? Decades of everything going wrong when it comes to these things… I’ve been burned so many times, inside I’m more like a crispy corpse. I’d have naught but scar tissue everywhere from the burns. I have no space left for more, now.

I’m kinda done with formal NHS Metal Health, now. Including this, possibly. Probably? It’s still a Question-Mark. Maybe it’s important to have. Or at least to know. For certain? But it’s a weird psychological issue again, and again another debated about everywhere. Not understood properly.

Might it bring more understanding, more relief, like the ASD one did? That there’s a “Name” for all this terrifying, horrific things inside me that lash out and terrify my ASD & Alexithymia more than half to death? 

I hate these questions. I hate that they even are questions. I used to know the answers before they were even posed. 

I’m not here. And I am terrified…

#research #panic #pictures #frustration #anguish #selfawareness #feels #personalinsights #suffocatingfeels #sad #drowningfeels #uncomfortable #uncertainty #drained #disturbed #upset #weird #asd #alexithymia #anxiety #overwhelmed #distressed #confused #disassociation #stressed #helplessness #exhaustion #researching #aggitated #fatigue #bpd #tmi

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Just… Isobar Nightmares Again..

 | 15°C

More Storms…

More Miserables…

More Skydiving Isobars...

 

This is what I have to look forward to Friday through Saturday, now…😟🤯☹️😖😣😥😢

 

… To make it worse, all of Friday is in the 900s too…

#weather #pain #isobars #anxietyPowered by Journey Diary.


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C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066

VISIT: www.callhelpline.org.uk



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(In Welsh)

💜💝… With All The Love & Care That There Can Be… 💝💜


A Futile Fibro Flare-Up Day…

Temp| 8°C

Still can’t think beyond the pain. My brain is zoned out.

I’m in no shape of, or for, anything.

Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.

Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.

It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺


There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.

I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢

I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔

… I could really do with her right now… 



I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…

  • I’ve been rushing around checking into, and booking, Premier Inns…
  • Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
  • I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
  • My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
  • I’ve had a good couple of mini-ish Meltdowns caused by other people…
  • My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
  • I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
  • I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.

 


There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.


 

NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

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