Category Archives: fatigue

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.


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.

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

Powered by Journey Diary.

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

Powered by Journey Diary.

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

Powered by Journey Diary.

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

Powered by Journey Diary.


CBT for an Aspie…

I am in a fugue… A Haze… A Nightmarish Dream. It does not ever seem to get better… But – I do not think I can say anymore that I am doing everything I can about it.

Meaning…? I was thinking yesterday about why the past was always so present, why my mind seemed always to be there – when I had, in fact, spent a lot of time and effort getting “into” being HERE and embracing it.

But.. Then I realised that was Before the Ococcusses. It dawned on me that I was still tormented by it, disturbed, distraught… Traumatised. The Social Worker & OT Bitches, The Rosalind C**t, Then Frikin Screaming and Screaming and Screaming all day, everyday for goddamned WEEKS, before finally being dragged into hospital, only to find out I had not one but TWO deadly bacterial blood infections that could have killed me already.

And then… The Aftermath. I lost all everything entirely from the sternum down and became entirely reliant on my hands and arms in a way I hadn’t had to be before.

My shower at home was so unsuitable for me now, it was beyond dangerous for me to be in it. I spent nearly two years in goddamned Agony because I couldn’t have a shower to ease my Fibro, essentially ensuring that I was Room-bound and Housebound from then on.

I did nothing. Spent an absolute FORTUNE on hotels rooms at the Premier Inn & Travelodge to try and have sporadic showers, when the pain became FAR too much to bear. In the end requiring an extra 50% dose of Morphine in my meds 4x Per Day, over 2 doses, effectively having to take Morphine 8 times a bloody day for AGES (that stuff is disgusting, and it was entirely unnecessary). Then, the pain from the spasms and rock-hard spasmed muscles all over just became more than too much, bad enough that not even the Morphine could mask it much any longer. It was just unbearable, and moving became optional… and occasionally so did even Breathing

To say this was all beyond distressing, over a very long period of time, after having been discharged from hospital after a very close call, would be the Understatement of the Year. I had full-blown PTSD about this, As Well. As well as from being left undiagnosed and untreated, as well as from losing my job and my career, as well as being thrown here, from London, on Zero Notice. On top of what I’d had to endure as a child.

So… Now… I am left in this… Fucked Up Limbo of Hell. Me being here, stumbling over where I have somehow ended up, with all its confusing and terrifying turmoil… And on the other side… There’s my Mind, all the way in the past of 6 years ago, in Leyton, before this all happened. When I could still walk, had my career, my life, my home, my London…

I tried being Present & Accepting before… Then the Occocuses turned up and tsunami-ed absolutely everything away. Leaving nothing behind. Nothing…

I am starting all over again. But I cannot deal with that – that is far too much to deal with. I do not WANT to look around me and Really See what is going on here. I do Not Want to be like this, in this way – so Helpless Vulnerable


And Yet, Ironically…

Doing Just That… Would actually turn the tables on so much of that. To be Present, In Control, Pro-Active, Planning, Calculating, Being Within My Own Power & My Own Mind Palace… Wouldn’t that be an efficient and acceptable Patch Fix on what cannot otherwise be changed?

Core Code may be set in stone… but why put up with the severe glitches of the old & worn foundation, when a Patch Fix can be applied to compensate & help the program do what you need it to do?

You Just Would… Wouldn’t You…? 

This is… New Thinking. Just came into my head now. As I was writing. But… It makes more sense, doesn’t it? See, this is why I Just Hate Bloody “Feelings”. Emotions are such a waste of bloody time! They just confuse everything and get in the way of common logic. 

~ No wonder the NTs screw everything up all of the time…! ~ 

I am here. I have to be here. I have to try harder & Not Be Afraid of All Of This that’s going on.

Change is horrendous & frightening. Disaster… Well, that is mind-blowingly horrifying & Terrorising.

As if… The Server was hijacked and destroyed. Now… the arduous task of reclaiming and re-purposing it for something else. For more. For something that has to be done & rebuilt from scratch. But… It’s a Server. It’s hard work, grafting, with hard thinking & communication within the brain to face and solve difficult or troubling issues — Freezes. Crashes. Not Booting, or Rebooting…

But slowly, yet most assuredly, it’s rebuilt once again, then the systems and software are installed, then the data it holds is slowly put in. And eventually, the data held starts talking back, all of it fully installed and able to do whatever you tell it to do.

This is… Troubleshooting…! When did **I** not know how to sort out Troubleshooting…?!!??

I was the QA Queen – it was my job, my soul, to be the best at Troubleshooting. My Work, My Life, I saw a problem, and I went head on at it to fix it. Right now… I do not know where that person is…

But she’s seriously letting me down here at the moment.

#anguish #dentist #grief #exhaustion #fibroplegia #devestated #dragondisappointment #helplessness #drowningfeels #despairing #aggitated #frustration #concerned #crushingfeels #dismal #fatigue #distressed #drained #feels #fibromyalgia #disaster #asd #anxietyPowered by Journey Diary.


%d bloggers like this: