Author Archives: delphinemusic

About delphinemusic

Over-enthusiastic Gamer, Goth, Geek, Techaholic, Dabbling Writer & Blogger, and Raging Coffeeholic ~ Loves Gadgets, Games, Tech... And Coffee. Lots and lots of coffee. ~ Obsessively-loving: Dragon Age Series, Mass Effect Triligy, The Witcher Games, Skyrim Special Edition, Elder Scrolls Online, Divinity: Original Sin Series (amongst others!) ~ ~ Self-Built Gaming Rig: i7-4970K, 16GB RAM, 240GB SSD Boot, 1TB + 3TB HDD Storage, RTX 2080 8GB EVGA Super Black Gaphics, 1150 ASUS Z97-A ATX mobo, Windows 10 64-bit ... Oh, and did I mention I love coffee...?

The Auti & The Dentist: SO – No Emergency NHS Direct or Dentistry in North Wales…??

Right… So my face exploded – for the second time – with an abscess on a broken tooth. It’s in the middle-ish of my lower left jaw bone. Literally overnight (it wasn’t like this yesterday!), this time, it sprang up and doubled in size; this thing is a Monster that’s already made me look somewhat like the Elephant Man already – and I am not particularly interested in a Second Go.

I already had this issue back in February, and it took over almost my entire face and neck by the time I actually got “Treatment” – and that was via A&E and two different hospitals, AND and overnight stay for emergency IV antibiotics, before it burst. Yes, that’s how long it took. I couldn’t really swallow (barely able to take basic medication), and it was affecting my breathing. It was hell… And then finally, they did something about it.

In the end that one was drained by the second A&E department, after they made me switch hospitals (that time it was also a weekend, and the hospital I went to didn’t have a maxillofacial department out of hours. Naturally…). So, after overnight IV antibiotics, I was transferred the next afternoon over to the other hospital. Where they stuck me with an enormous needle, and drained the stupid thing out. Seconds later, my face felt and looked pretty normal…

And funnily enough, I really didn’t want to go through that again.

CALLING FOR HELP…

So… Like a sensible person, the first call was to Out of Hours. I’m in pain, and my poor Autie (aka Autistic) Brain is all over the place, so my Mam (bless her), is doing the phoning (she’s a nurse, so that’s useful at times like these)…

They said, because it’s Dentristy, it’s “Call NHS Direct for them to tell you where you can go” (thanks COVID-19 for messing something else to do with my health up). Fine. Fair Enough. Just call 111, Right…? …. RIGHT..??


Ohhhhh NoNope. Nope. Nope!

Not in North Wales…!

Possibly the ONLY place in the UK where CANNOT USE 111 phone number – their FREEPHONE phone number…

WE HAVE TO PAY!!

In North Wales, under Betsi Cadwaledr Health Board, the people of poverty-ridden North Wales (and that’s before COVID-19) MUST CALL AN 0845 number to reach NHS DIRECT!

0845 46 47

Calls to NHS 111 Wales are free from landlines and mobiles. Calls to 0845 46 47 cost 2p per minute, this will be in addition to the telephone providers access charge.


Nooo, I’m NOT Mad, or Angry… No. I am Stunned. Horrified. Fuming. Furious. Disgusted! And My Mother has to put £10 Credit (as opposed to using her normal GiffGaff “Goodybag”) onto her phone to try and call them. Unbelievable!

It takes about 20 Minutes to get hold of them… And then… then they wanted to talk to me Oh Dear. That is not very Auti-Friendly, but they wanted to talk to me about my symptomology.

I managed it… Just. They told me I needed to phone a specific number, and they would be open between 1pm and 4:30pm today. A free one at least, starting with 0300, and a Code to go with it, as a Reference.

0300 0856 230

She proceeded to give me other gems, like using ice packs or not having things too cold or too hot. Nothing sweet (if that’s the case they really need to re-think how they make Oramorph…!). Just in case I was a complete moron. And That Was That.

And You Know What? That phone call cost £7.76... Nearly £8 for that! It makes me want to throw up and cry all at the same time…

Am I actually being Victimised because I am… Welsh, and in the Northern End?!

The Upshot of this Phone Number thing is that they have amalgamated all kinds of things into that one number. Including Dentistry. And apparently they do not answer their phones, because all it did was ring and ring, then ring off… Over and over and over again.

Just over £2 was all that was left of my Mother’s phone Credit, from that initial £10. She put another £15 on to call NHS Direct back about this, to see if there was something we were missing, and obviously didn’t know how long she was going to end up having to wait.

It was indeed another long wait. Only then to be told, by the person who finally answered, that, actually and in fact, that Dentistry Amalgamation phone number wasn’t actually open in the afternoons on weekends, at all, after all… It’s only open on weekends from 9-12pm. And you have to just keep on ringing until some douchbag answers the phone. Maybe. And it’s not like this is even Common Knowledge – or on the Internet. I looked. A lot

Now, the Second Time We Called — NHS Direct cost £8.66...

A Grand Total of £16.42 basically WASTEDand £25 of Credit Purchased…

It’s not like we have any money to spare or waste, let alone THAT much…

But worse — could you imagine someone with even less means needing to contact them? I mean… They just wouldn’t…(!)

SORRY, NO WE CAN’T HELP…

A little while after all that, NHS Direct Triage calls back. She insists on talking to me… and I don’t like her voice; it’s difficult to concentrate on and I have to listen for intonations, enunciation, tone, etc – or “Vocal Language” (like Body Language), as I call it in my own head…

It didn’t take long for the Sheen (that’s the veil of “Normal, NT” communication that I force on) to fall down, so I handed her back to my Mother when it was clear she didn’t like the way I was talking now. I was scared, overwhelmed, and utterly drained and exhaustedand I did not have enough Spoons to play along with NT voice tone games right then, whatsoever

The final answer at the end of all this ludicrously ridiculous – and ridiculously expensive(!) – debacle, was — dear Gods help me — to do what we could have figured out for ourselves, if we’d only just realised there was No Other Help out there. To an NHS community hospital (sort of), right next to where my mam works along the prom, where they hold a dental clinic in the very early mornings, with a walk-in centre…

As InThe very place we spent all that time, effort and money, trying to Avoid…(!!)

Now, I have been left with No Choice… And I am forced to do something that is just going to make me all the more ill. Especially with my Fibro, and my Autism.

Tomorrow, I have to be at this community hospital by or before 8:00am, so I can join what will be an ever-expanding queue (Auti part very upset about this bit), for a clinic that doesn’t even start until 9am.

To manage this, I have to be awake All Night — This is because that between my pain, my meds, and the utter exhaustion, I cannot get up until at least 11am, and not entirely lucid until 12 or 1 pm and counting. If I do not sleep, I don’t have that problem, so… No Choice.

I’m Scared. I’m Overwhelmed. I’m Exhausted Beyond Anything and Everything.

And somehow, I now also need to do this. After wasting all that time and money, and effort.

Gods Help Me…


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…                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      


First Consequences of Cancelled Surgery…

… And this is only the beginning of them…


I’m SO exhausted and in So Much Fucking Pain, that I am Severely Blacking Out again — as I have been all day… 

I am looking at having to suffer through a Third Sleepless Night In A Row… And I just can’t get my head around it. This obviously shouldn’t be happening — this should have already been All Over With By Now

The Utterly, Utterly brain-exploding Blinding White Agony has been tormenting me all day… Like last night. And yesterday. And the night before that. And the day before that…

Immensely Agonising, Unrelenting, Cruel, Exhsusting… These Spasms have kept me awake for two entire nights, consecutively…  Never ending. Needing to sit through immensely intense, unbearable, bladder spasms.

Screaming and writhing for even more days after that stupid thing should have been removed and Replaced… 

My head is Spinning… I literally cannot see straight   — my eyesight wavers and twitches rapidly, blanks out, cannot focus… And all I want to do is to go to Sleep… 

I have been Blacking Out All Goddamned Day… It’s been horrible. So stressful. So Anxiety-Inducing… I am Vibrating from the Physical & Emotional Stress — and unable do to much of anything except have to endure the Agony Ripping through my body, every time  a  Spasm explodes inside…

My lower back is in Horrendous Pain; most of this is stemming from the fact I need to go Make… And. I. Just. Cannot. Go…!!!! Even trying, it could only just come right out wo…

I can’t lie down — or even sit up — in bed, because of the Spasms… One wrong breath and the damned Catheter will Shove itself the fuck out.  

Getting annihilated by wanting to do something good for myself…. How utterly cruel can you get…?

As long as I am doing something, something that involves some physical challenges involving some effortlike building a squares cupboard, and having to rearrange your bedroom to re-rig your computer — then I am playing with Fire. Brilliant-White Mind-Exploding Agonising was Fire.

Powered by Journey Diary.


The Corona Effect…

SoThe Rest Of The World Finally Has To Find Out How It Feels To Be Unemployed, Housebound & Helpless…

In the blink of an eye, overnight, without warning
Your. Entire. Life. As. You. Know. It. Has.

Completely. Vanished.
Without Warning.

Covid-19 — CoronaVirus is forcing people to face what it feels like to have your life dissolved, taken away from you, without you getting a single goddamned say in it…

One moment everything was perfectly normal, and you had nothing to worry about but normal life stuff… Then — Snap! It’s all so very suddenly just Gone

Perhaps, now, at least, we might get a little more Empathy & Understanding when it comes with our own circumstances, given those of us who have no choice, will not be walking away when their Three Months‘ Quarantine is done.

For the last Six and a Half Years — and especially for the last three years I’ve not been able to walk at all — I’ve believed that Life has become way too surreal

Somehow… Now… That experience and sensation has actually been surpassed even more, by the latest turn of events with the CoronaVirus Lockdown.

I think I suspect that I’m shutting down on talking, discussing, messaging, writing, blogging, right now, because I simply do not wish to acknowledge or remember what it’s like to… Exist… right now..

And I wish that was because of a stupid CoronaVirus… That’s the least interesting thing at the moment to me… If anything, the rules are everything I’ve ever wanted or dreamed of, especially as a confused child and teenager… I mean, seriously… Where the hell was this thing when I was younger?!! NO going outside! NO being around people! NO going to the shops! NO Visitors! NO Gatherings! NO Travelling! NO CROWDS! NO TOUCHING!! NO SCHOOL!!! SOCIAL DISTANCING!! 

Crikey…I’d have been freaking Bouncing…!

Guess I might be one of the few Auties who’s actually Not having their lives disrupted and destroyed at the moment…? Am I one of the few people in general where life pretty much just goes on as normal…?

If I was living my life as I had been, I’d have been utterly, utterly distraught and destroyed… And I know that, because I already went through it Six and a Half Years Ago, when all this and more was taken from me, forced upon me, and annihilated life as I knew it…

It’s taken me this long to even start thinking about the possibility of Acceptance for it… And the Frustration, Resentment, Anger, Fear; they’re all still raw, alive and well…

Clearly, I’m going to get a PhD in this Isolation and Social Distancing after all the years of practice I’ve had here…! I’ve been trapped in my room, in this house, for over Five Years…

Seriously, parts of me thinks it is darkly, ironically Hilarious how people are panicking and Stockpiling (toilet roll…??! Really, crazy people?!!) at the thought of having to be isolated at home for a period of time, as of its the Apocalypse or 28 Days Later… I mean, come on, it really isn’t worth so much Drama!

It’s just 12 WEEKS people! Three MONTHS! … I’ve been doing this for 6 YEARS… And I’ve survived. Ish… And, suddenly, I’m the one looking at others with pity and distain for freaking out about doing something I just do every day…

Come and live in Our World, People…! Here, this is All. Normal…! (So just get on with it, like we do..? Like you all Expect, us to...?)

Seeing people bemoaning the fact they’re in self-isolation online, that they’re forced to not see people, forced to not work, forced to only see family over Video Call, even forced out of work because you cannot leave the house… Well… This is how I live… and I never have received any sympathies, extended support, or outreach because of it, and have clearly been expected just to… suck it up…

So… Shouldn’t. Everybody. Else. Now…?

Well, of course the answer to that is No… It wasn’t right to expect me to, and not right to expect everyone else to… But, my point is the hypocritical attitudes of people… When it was “just me”, I was ignored or pitied… Left to my own devices to just do it. It was a “Sad and Unfortunate” situation. — “Oh, dear, you poor thing… Now let me just get on with my life…”

But now it is they who are also so suddenly forced into the same situation…?

Well, now it’s suddenly up unimaginable to people that they have to so suddenly live this way… So… WHY is it only NOW all this is so TERRIBLE? It wasn’t so terrible to them when it was all forced onto me… and plenty of others who are also in the same situation.

Oh, and you know what else all us housebound and ill people didn’t do….?

FREAKING STOCKPILE!!!!

“Normal” people, “Able” people, “Healthy” people… They Are All Hating This. Others are pouring and heaping their sympathies on them, wishing them well, offering support, being kind…Where they hell was all that when I was suddenly permanently housebound? Where the hell was the sympathies and kindness and understanding from people when there was no more going out or being normal ever again when I could no longer leave?

It wasn’t there, because people didn’t want to think about it, or be associated with it, or acknowledged.

Where was the extra support when my already fragile mental health was Destroyed by being room-bound, helpless, imprisoned, isolated, and really ill…? Over the YEARS…? 

It wasn’t there, because they didn’t want to know. Or didn’t understand. Or if frightened them too much to think about it, or to be faced with it. Now, of course, those very people will expect (or at least hope for) the very same sympathy and support they refused to give others, when devastating illness or conditions controlled, broke, and confined those people, when they became too ill or controlled to do anything anymore...

I’m not the only one by far with lifelong or long-term chronic illness or condition that’s had scowly-faces, derogatory remarks, heavy exasperation, being told to (effectively), “buck up, it’s not that bad having to be home all day”, or people dropping out of your life because you don’t do anything or go anywhere any more..?

Now… Everybody gets to understand just what this is like — Being imprisoned within a small building. With other people. Unable to leave, unless it’s exceptional circumstances. Forced into it, because if you don’t you’re going to pay, or you’ll affect others negatively, or you’ll have to suffer the consequences by being very, very poorly… 

Literally nothing about my life has changed. This is my life. Now everyone else gets to see what it’s like.

  • When they’re forced to stay indoors and not leave their home.
  • Imprisoned because “they’re in a vulnerable condition” & Forced to rely on others who aren’t.
  • Forced into being separated from Family & Friends
  • Forcibly prevented from going out to places, meeting up with friends or family. 
  • Forced into living on the Internet for all forms of actions, reaching out and even communicating with friends and family.
  • Forced into No Travelling. 
  • Forced into knowing that if they left, they’re making themselves prone to being really ill or even dying. 

WELCOME. TO. MY. LIFE.

WELCOME. TO. HOW. SO. MANY. PEOPLE. WITH. CHRONIC, TERMINAL, DANGEROUS, ILLNESSES & CONDITIONS. LIVE. 

EVERY. FREAKING. GODDAMNED. DAY. FOREVER. 

  
THE SELF-ISOLATERS will get to GO BACK TO NORMAL.

THEY only have to do it for a FEW MONTHS.


THE REST OF US TO WHOM THIS EXISTENCE IS OUR LIVES…

WELL… WE. NEVER. EVER. WILL.


JUST… THINK ABOUT THAT

… Just Imagine That Was You

So… Now, Everyone gets to live this shit… They get to understand why we’re angry, frustrated, depressed, hopeless, Helpless… Bored… you feel when in this situation…

 Now, they are in the same boat…

Except, y’know… They have a set time-frame. They will get to go back to normal. They will get out again. They will be freed from this prison. 

I. Won’t.

We. Won’t.


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…

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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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