Category Archives: stress

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…                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      


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.

🥺😢🥺🤬😖


Changes…

 | 14°C |

Brain so traumatised flashbacks are so very easy to trigger… So many things inside my head, burning it, terrorising it.

Living with horrors, with so much actual real physical agony pain, the agony of emotions & Feels, I can’t help the Symptoms of Trauma coming back to haunt me… 😢😣😔

The  chaos, the “Landfill”, the lack of control, the despairing desperation of just things thrown on top of each other – simply because pain makes it too unbearable to sort it out or put things away properly… It’s everything I was… I don’t really think I am quite that anymore, and coming slowly out of it.

But still, things are yet to be available to me — like being able to move completely freely (within the confines that I have), to be able to manage to do things without paying in pain afterwards, to think clearly (for all “EDI” being here, powering “her” takes extreme effort and energy I quite often do not have at all, and when she whirrs up & powers on, to use herself automatically, the exhaustion and drained emptiness inside is more than Real), to physically do what are still quite demanding things… Despite being stronger, despite being without that level of pain, it’s still difficult. Draining. Demoralising. Downright Confusing.

All these things come with Feels I do not like, and certainly do not understand. None of this makes sense to me — and at least what I have found out recently has answered a lot of questions I had about this, so at least now, it’s a lot less scary for this to actually happen. If Still Not Just As Confusing

When you have Alexithymia and ASD, the strong and confusing Feels that come from having absolutely terrifying conditions run by high-rate emotions, is downright goddamned Terrifying

CPTSD triggers traumatic emotions, responses, reminders, Flashbacks, Fears, … All things that to someone who barely knows Feels even exist, is utterly, utterly bewildering, terrifying… & Out of my Depth, and WAY out of my Control

BPD (Borderline Personality Disorder)… All the things I read in what that makes your brain do, is right there in me… And without knowing all of that — it’s been utterly, completely, mind-blowingly off-the-charts Confusing & White-Hot Terrifying

Now I know there are these… Gaps… inside me & my Brain, I realise that maybe, like Lolli keeping saying, I never will truly understand them… But at least now I know where the are coming from, which is a goddamned BIG DEAL. Like an Epiphany. Boo also said, when I showed her BPD, “Did you write this…?”, because it described everything that nothing else seemed to quite cover — the extent of my behaviour didn’t correlate with what was already “normal” for ASD.

Like the Alexithymia — ASD people have difficulty with Feels, but they figure it out. I never have, and Now I know that I never will. It’s a relief to know. It’s a relief to know about the others, too. There might be no changing their… “Quirks”However, there are plenty of ways to balance them out and manage them. Understand them.

It makes a Difference.

It makes All the Sodding Difference In The World

It’s just that… Right Now… I Just Have No Idea Where To Even Start With It

#aggitated #anxiety #dismal #confused #frustration #disturbed #asd #alexithymia #upset #bpd #distressed #trauma

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‘The NHS has been destroyed’: Boris Johnson confronted by father of sick child | Politics | The Guardian

Man accuses PM of visiting Whipps Cross hospital in London for press opportunity
— Read on www.theguardian.com/politics/2019/sep/18/nhs-destroyed-boris-johnson-father-sick-child-hospital-london

Whips Cross Hospital is indeed a derelict pile of complete rubbish… Services cut to the bone, An ancient Victorian set of buildings falling apart at the seams, waiting lists too long… Has been under Special Measures yet has just become worse…

Six Years age Now… This hospital screwed with my health & helped destroy my life… 4 months for a pain management clinic referral, 9 months wait for MRI *Results*… Further 4 months wait for Rheumatology referral… 5 minute consultation to be told had “one of the worst cases of #Fibromyalgia he had ever seen, especially on a young(ish) person… Then discharged me with no follow up, care or health plan. Just… Nothing. I was left to fend for myself.

18 months in total, start to finish, it took altogether for me & my tireless GP to get the Fibro Diagnosis Of… well, Anyone… Then, Without care I ended up so ill, I lost the use of my legs through disruptive nerve issues from Fibro & Hemiplegic Migraine.

With proper immediate diagnosis & care, this would NEVER HAVE HAPPENED… 😧😰😩🥺😢😡🤬🤯

So… Whipps Cross… I have no words as to how broken, downtrodden, buggered… this place actually is. I wish I could have given the **CEOs** of that death-trap hospital a piece of my mind… They’re the god-awful culpable ones…


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.


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



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

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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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