Category Archives: lost

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.


BETRAYED — BY CORONAVIRUS & NHS

I go through this Crap-Ass Existence in as much silence as possible these days… It’s easier, because writing about it requires Processing that I cannot manage anymore — a fact which hurts me and depresses me, because I’ve always used writing to deal with things my entire life…

BUT this time, I feel things have gone too far, and I finally REALLY have something to say…

Yes, many people are ill and some have succumbed to CoronavirusBUT… do they have to Further Destroy what non-life that I have left because of it? I may as well catch it — I have no life. Barely an existence… And now they’ve taken the ONE THING that could have helped give me at least a little bit of my pathetic existence back…


THEY CANCELLED MY SURGICAL OP FROM GODDAMNED CORONAVIRUS…

They called me TODAY – It was going to be on FRIDAY… 😠

I have waited For. OVER. TWO. YEARS… Had FOUR PRE-OP APPOINTMENTS since getting my Initial Consultation Appointment — in FEB 2019 — after waiting ONE YEAR for that alone! One of them was for Haematology for blood tests and Clotting Preparation, because it was FINALLY going ahead…!


All I needed was a SIMPLE SUPRAPUBIC to make my life even slightly worth living… I WAS SO GODDAMNED CLOSE…!!!

I am… DEVASTATED

My poor Aspie Autistic brain cannot deal with all this… My Mental Health is already virtually destroyed having to deal with this catheter situation… I don’t even know HOW to process this now… Having it come out on its own from constant agonising spasms, and doing it anywhere from 45 MINUTES to 3 weeks… It’s CRIPPLING & LIFE DESTROYING.

I do nothing but barely exist. I am a slave to this… Constant agony, loads of extra meds just to try and keep it from shoving itself out straight away… I had to be up in the middle of the night to about 4am on my BIRTHDAY for a nurse to come and shove one back in… and don’t get me started on the 24/7 agony of the bladder spasms, where I can’t even move and barely breathe… All day. Every day. For Two Years. And now Counting… That’s on top of paralysing and agonising Fibromyalgia and Hemiplegic Migraine, and a bunch of other crap to go along with them…

I was due to have it by LAST AUGUST… and yet, March 2020 (7 MONTHS LATER, from that) I’m being CANCELLED ON.

Ohand not even God himself knows if or when I will ever get it done in the future now, too… Yes, they basically verified that with me when I asked, ”When I am going to have it then?”…

Right now… I am doing my level best to fight a Screaming, Hating, Horrified & Terrifying Meltdown… It’s there, bubbling away inside me from Panic, Dragon of Disappointment, Horrified Realisation & Understanding… And the utterly Devastating realisation I’m going to have to suffer through this now quite probably for Many More Months To Come

Even my dog (and he’s a rather thick Staffy) knows very well they are NOT going to prioritise Coronavirus-Cancelled surgeries over the Regular, Normal Ones already booked in for whatever time it is that this insanity ends… We are going to be pushed back and slotted in, wherever they can shove and stuff us — regardless of the fact we were Technically There First

This is Definitely where Alexithymia Really puts me up shit’s creek without a paddle… I do Not know what to do with myself… I am a screaming mess, trapped inside my own head, and trapped inside my own body, with a million things suffocating me inside, without a goddamned clue as to what most of them are… It’s bloody goddamned Terrifying

I think I figured out a few… I have a book, so I’m trying to learn better… They’re in the Tags at the bottom… I’ve been punched in the gut and betrayed again and again and again by the NHS, and now this Really, Really Screws With My Head… And I Really, Really Don’t Want a Meltdown…

I literally do not know how to deal with this. I feel sickSickened… Right to my stomach. My Depression, Despair, Anguish, Grief… are all threatening to go ape-shit, and I am genuinely struggling with figuring out where the Point of Being Alive just Stops. I am more than well aware that if I were a cat, I’d have been put down a Long Time Ago, because it would have been the Merciful thing to do, since my Quality of Life would be Zero, and all I would ever experience was Pain… So, I wonder where that line for Humans really is…

I Hurt… Inside and Out… In my Heart and in my Soul. I am Scared…. And I am SO, SO Goddamned Exhausted… Having this form of Catheter is my Existence now…. Dictates everything… And now, I have to Continue to be a Prisoner In My Own Body, after being so ridiculously close…

And to make it even worse now? There’s no Paracetamol to be found, or virtually impossible to find!

Everyone is. “Stocking Up”…. and WHY? What is actually WRONG with THEM?

WITHOUT THE PARACETAMOL my Pain Meds WILL NOT WORK PROPERLY… I will be in even MORE agony — first I have to keep with this catheter Pain, now it has to be worse, because people want to have a caseload “JUST IN CASE”? My AGONY is NOW… and I just feel

DEFEATED.

🥺😢🥺🤬😖


I. Just. Cannot. Catch. A. Break. I am beyond Utterly EXHAUSTED. Another Goddamned Morning From ALL HELL…

AND I am in a LOT of pain, in my back – To make matters rather worse, the bed (Hypnos Mattress) requires flipping, and it causes a lot of pain when it’s getting soft and unsupportive.

This time it was the goddamned dogs again… Barking, even bloody howling, at the door… For Gods know what! But they were going ballistic – and Dad was doing absolutely nothing to help… They were edging on Red-Zone-Gone and he really didn’t understand this.

So – I Slid Down, All. The. Way. Down. The stairs to get to them. Souly went immediately quiet; Buddy did not. I focused on Buddy, then he went ape-shit crazy when I compronted him with a “Tch-Bite” with my hand – So, I picked him up by his collar to standing (as I do with Souly), and the damned Wackadoodle went and Nipped me… Cheeky Fuck! Cats do far worse than him when they’re chilled, so it was hardly anything to experience — but… The Damned Cheek of It!!!!

Well, He got Alpha Rolled (so much easier than Soul, who knew…!!…). Souly was pulled back because he lost his temper a bit at Buddy. Then I really let rip into them. A LOT. And I was furious with them for creating such a bloody Fracas! 

After that, some planes turned up, so they both just cowered. Not sure if it didn’t help make my point more, actually, showing something to be afraid of as part of my arse-ripping…? Well, I let them go, and had to then face the fact I had to climb my way back upstairs.

I did it – pulling one knee up at a time, leaning on the opposite side for stability, then hauling myself up each goddamned step.

I just about managed to make it up when I had to turn to comfort & soothe Souly more, for several more minutes on the stairs, when the building site noises across the road by the (former, now) primary school and Bedol land were upsetting him again, and making him bark. Apparently, he’s not a fan. Just like his Momee…

Once this was finally dealt with, I went back into my room, feeling, “Well, Now I think I am ready to get to Loughborough…!!”. 

It had all been so fast, so exhausting, so overwhelming, that I immediately went into ShutDown Mode. It took a while and a Buddy to start getting me to even start talking again.

This had all started when I was barely getting to be Awake & before I had any coffee. My first coffee was at 12:55pm. After EVERYTHING, including my ShutDown, was done with. And… Well, You’ve seen the Isobars… 999mb.

I. Am. Just… Done. Completely & Utterly. Done. So, So, So Exhausted. So, So, So Very Drained. Mentally, Psychologically Done In.

But now… There is packing to be done. Things to sort out Properly to go away for a WEEK. Last time went away for a long time was back in March, for my birthday, in Caernarfon for 10 days. And we all know how well that went…

This is also NOT the Time Of Year for all this… This is the Anniversary of EVERYTHINGS This Time Of Year. Maybe different months and years, but between October & March is when EVERYTHINGS happened at some point in time. Like the Gods just Insist I Hate This Time Of Year!

  • October 31st 2013 — The Beginning of EVERYTHINGS
  • November 2013 — Having to Move House & Settle Down in Leyton
  • November 2013 — Suffered from Pneumonia – Had to still walk the dog and ended up having to go back to work… a 4 hour Round-Trip Away
  • December 2013 — Fibromyalgia is starting it’s campaign to take hold of my body for itself
  • March 2014 — Had to give up my Job at the Brompton Hospital from being desperately ill, just before my birthday
  • May 2014 — See Pain Clinic Consultant, he wants an MRI Scan 
  • June 2014 — MRI Scan
  • November 2014 — “Officially” Diagnosed with ASD
  • February 2015 — Finally got to see the Pain Clinic Consultant re MRI Scan of lower lumbar area (Nearly 9 months later!)
  • June 2015 — Finally get “Officially” diagnosed with Fibro, then… Nothing. No followup or help given.
  • November 2015 — Dumped by Boo; Dumped with my Parents back in North Wales, at Nain & Taid’s old house.
  • December 2017 — C*****g Bitch at Roslin breaks my brain & My Very Soul
  • December 2017 — The pain in my tummy and pelvis turns into the Ripping & Searing Pain of All Mortal Agony, ripping everything inside me to shreds & leaving me Screaming at the top of my lungs in White-Hot-Agony-of-all-Agonies
  • January 2018 — Emergency Admission to Hospital. YGC Diagnose not one, but TWO different Blood Poisoning inside me, as well as Multiple Other Infections, too (Mainly Urine & Bowel, others unidentifiable).
  • March 2018 — Finally Released from hospital – the day after my birthday. Had 37th Birthday in Hospital.
  • October 2018 — Pain Clinic finally comes through with Physio+Therapy Treatment option for me, with a date. But then, CHANGE the date – to January 2019!
  • January 2019 — Unable to cope anymore with this appt hanging over my head, just shortly after the Anniversary of that Bitch in Roslin – Had Nervous Breakdown in the end. Had desperately tried to get Mam to agree that I shouldn’t go… But it was too little too late when she finally did cancel it — AFTER I’d had said breakdown
  • October 2019 — Have been dissociative and derealising since January, and now it’s going Supernova because it’s That Time Of Year, Again…

Powered by Journey Diary.

Painsomnia

 | 15°C

Painsomnia… Aptly-Named...

 

For days… weeks(?)… I’ve been unable to say words in writing. My head aches at the mere thought of making sense of my Feels enough to attach actual words to them… 

Dailyos haven’t been filled in (will have to do them retrospectively… Somehow… Using this log…). Even this Journey Journal hasn’t been used for anything much more than a LogBook. 

I’ve found this to be a Notably Reliable Indicator of Depression. Not the bad kind… No. The Really, Really, Badly Fucked Up Kind.


What’s been happening over the past few weeks, along with the God-Awful bitter hopelessness of recent times, is ensuring my brain is being cemented into the Wonderland of my Mind… And it seems I am, once again, being packed up and flung down that Rabbit Hole, ready to be destroyed and torn to pieces all over again. 

Chaos. Fatigue. Exhaustion. Grief. Confusion. The inability to process complicated Emotional Feels. Not enough time to process Complex Emotional Feels. It all just builds up and up and up, until I’m so completely and entirely overwhelmed…

I am done in… Distressed. Frustrated. Overwhelmed. Frightened. Anxious. Wound Up. Agitated. 

I fear sleeping again. I’m not even sure if I know why…

I am am in such a physical mess… And not just the Fibro. Not being able to wash my body, or my hair, or engage in any proper self-care at all is heartbreaking. But it also has an actual knock-on affect in so many other ways, too. You cannwot get properly cleaned with wet wipes. You don’t get properly washed to prevent catheter infections. Taking all your clothes off properly means that heat rash, allergens, creams and oils, groom and backside areas get properly washed, rinsed and sluiced. 

I need to get some kind of grip on it… Quickly. Before it become next to impossible to wrangle The Beast back without an all-out war…

#anxiety #anguish #asd #aggitatedPowered by Journey Diary.


🏴󠁧󠁢󠁷󠁬󠁳󠁿 FOR WALES — COMMUNITY MENTAL HEALTH HELPLINE 🏴󠁧󠁢󠁷󠁬󠁳󠁿


C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066

VISIT: www.callhelpline.org.uk



C.A.L.L. FOR Wales
🏴󠁧󠁢󠁷󠁬󠁳󠁿 Community Advice & Listening Line 🏴󠁧󠁢󠁷󠁬󠁳󠁿

🏴󠁧󠁢󠁷󠁬󠁳󠁿 C.A.L.L. I GYMRU — Yn Gymraeg 🏴󠁧󠁢󠁷󠁬󠁳󠁿
(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. 😖🤕😣😔

 

Powered by Journey Diary.

The One With The Near-Meltdown, Dragon of Disappointment, and Too Many Feels…

Weather | 11°C


Complicated. So Much… Too Much… Feels… Too Many.

… All over the place


I don’t know what to do with them. They’re scary and confusing. I can’t even make sense out of, or even try to unravel, them…!


Nightmare day before it even starts. Managing to get to sleep (as in longer than 2 hour naps), on occasion, now, but dreams still come. Disturbing, or weird, or… unnerving ones. When Mam comes to wake me up, sometimes it’s a little bouncy for my sensibilities, and this was one of those times, unfortunately. I felt rather… rattled — but this is actually quite unusual for me. I don’t think I’ve reacted this badly for a while. I didn’t really do anything about it; I explained it to Mam — or tried to, at least. I don’t think I made much sense. This day was already off to a bad and complicated, confusing start.

Then the dogs were screeching everywhere, and no one downstairs was stopping the goddamned Wackadoos. Once again, I talked to Mam about it. But she got upset, and it all rather went south from there.

Mam came up, and when I tried to talk to her (apparently “in the wrong way”… 😕🤔😞 Which, for me, is unfortunately more common than I’d ever appreciate… 🤨😒), she started getting even worse with the defensive, the frustrations, and the squeaky “up tones”… which always makes me upended and upset, off any even-keel, and unable to cope. Adding that to the state I was already in before, and how I felt after this morning, and it was a nightmare waiting to happen inside my brain.

This escalated into a Meltdown Situation — just about managing to stay on the right side of sane(ish). One which I kept precariously balanced on the knife-edge of Full Blown Nuclear Volcano Meltdown, all furiously bubbling away inside me. It felt like a six-tonne boulder, that I could barely keep holding above my head. One that was threatening to fall onto my head. I was actually physically shaking from trying to keep it in check… It was agonisingly painful, both physically and emotionally/psychologically. I managed, sort-of. It stayed out of Meltdown Mode, remaining in the pending tray instead. Keeping a grip on it, keeping it up off me. I still don’t know how I succeeded.


To make matters worse, my friend S (kindly, compassionately, clearly, and “safely” … this girl should get a Bomb-Disposal medal for executing this so perfectly…!) informed me she had accidentally opened up an Amazon package that had been holding my precious birthday present — The SSD for my PC C-Drive upgrade, which has been put to one side, untouched and unopened, until such time I am ready to be able to upgrade said computer system.

… Now, I realise it should already have been done — going to Caernarfon was a big mistake, and I should have stayed home to do up my Baby. Now, he’s buried behind random stuff and mess, and I can’t get at him, to open him up and change the drives. Not only that, but because of what happened there on that “break” away, and how I am subsequently feeling because of it, I’m also in no psychological place to safely make the “brain transfer” that my Baby needs, between my original 120GB and the new 256GB SSDs.

Technically, that sanctity of that Gift has now been sacrificed after this mistake, and the packaging of the parcel is an opened mess… No More “Untouched and Unopened”… None of that for me now, for my Birthday Present from S… 🥺😫🤯😓😥 My First Birthday Present from S, with her being here with me. But, instead of being shocked or frightened by it, I am soothed and supported into hearing it and comforted whilst processing it.

This is my Friend, S

This might be the first time that something usually so… catastrophic… does not go off and explode like an IED in my head. I’m upset. I’m horrified. I’m Hugely under the shadow of the Dragon of Disappointment. It smacks me hard, and it’s pretty awful that this happened. However, as I explained, it brought the Dragon of Disappointment, yet gave it nowhere to land. There was no Valley of Terror, Panic, Shock, Trauma, etc, for it to land in. So, he’s kinda flying around there, half-heartedly, until such time he gets bored and buggers off again. And I am free to just ignore him, because — although he’s there — he’s not really doing anything, nor (more importantlyDestroying anything.

Finally… Somebody gets it — Nailed it. The fact niggles, but it’s more like a bored and petulant huff in the background that you can’t really take very seriously. I’ll take it.


#anxiety #helplessness #frustration #ptsd #trauma #despairing #dragondisappointment #alexithymia #exhaustion #pain #depression #asd #lost #fibromyalgia #paraesthesia #drowningfeelsPowered by Journey Diary.