FEELIN’ [WAY TOO] HOT HOT HOT…!!

I Literally Feel EVEN WORSE now than I already have done since this Weather Thing started … I. REALLY. H.U.R.T. Today… I Just Have NOT Hurt THIS Much Since Before I Was In Hospital… And I was given my Oramorph & Tramadol… Now it’s Worsening??

 

I feel like every cell is in its own Iron Cage, Spikes not only impaling mercilessly, but also Electrified and Turned  ALL THE WAY UP To “BRAIN-CRUSHING LIGHTENING STORM” Level…

 

… Then… ALSO Installed the WORST, EVILEST TENS MACHINE EVER MADE IN THE ENTIRE GALAXY and Turned THAT All The Way Up to “AAAAAAGGGGGHHHHHHH….!!!!!!” Level…So everything is ALSO VIBRATING, BUZZING, TINGLING INCESSANTLY, CONSTANTLY, RELENTLESSLY, At a Level that is Literally Impossible To Tolerate…

 

… On TOP of The Billions of Electrocuting, Impaling Spikes of Death that have had their points SLAMMED right Inside you, Right Down To Your Bones ….

… EVERY CELL having to deal with all this separately, leaving YOU — the sum of the parts — In Utter Mortal AGONISING BRAIN-DESTROYING AGONY….

 

Welcome.

To.

Fibro.

Come in. Take A Seat. I Promise That
You’ll
HATE EVERY GODDAMNED SECOND…(!!!)

 

… I feel like I’m going to throw up my shoes any minute… And every pair of shoes I’ve ever worn, owned and just plain Liked (And That Is A LOT Of Shoes…)…

 

It’s TOO INTENSE… BRAIN-DESTROYINGEvery Movement, even Breathing… Is… Screaming In My Head… Because I can’t Scream Out Loud… It Would HURT TOO MUCH…. The Irony… 

 

I haven’t been able to Drink Coffee… ME..!!!! It’s like — aren’t I being Punished Enough Here…?! AND I have to Drink More Water — Which, (BTW, Dear DAMNED Weather..!)…  HURTS Me to drink when The Pain Is  LIKE THISIt’s Never-Freaking-Ending…!

 

I am MISERABLY MISERABLE… Struggling to breathe — my SmartWatch too often records 95% these days — oh and I know it’s right; hospital monitors themselves have recorded 93-94% more often than not when I am in this much pain… So, 95% seems relatively Quite Good, you see.

 

Apparently, it’s NOT going to be Forever (Certainly Freaking Feels like it…!) … As you can see in the pics, it’s showing signs of… Abating somewhat. But What’s Quite Disturbing… Is the Isobar pattern As Of TOMORROW… It’s DROPPING LIKE IT GOT KICKED OUT OF A PLANS SANS PARACHUTE20 millibars in less than 48 hours??

 


NOT. GOOD.

 

 

 


“Care & Repair” Needs To Change It’s Name…

It was August 2019 when I had my New Shower Equipment Finally Installed in my Wet Room… And it was a LONG Time ComingNearly TWO YEARS in the making. Had to Buy THIS Chair Myself (theirs were a bit useless) and the guy who put it in was… Brusque… to put it nicely. And Mildly... (but… tbh… Dismissive, Short & Rude might be better suited…)

That Shower Chair & Accessible Shower Set-Up Changed Everything… and… left me bereft and Traumatised about what was Lost and What Could Have Been, if they’d have put it in SOONER

Comfortable and Really Easy To Use; It’s Been A LifeSaver. I have always preferred to Spin into seats like from a high surface like a chair into Kushtie (my wheelchair), And also Out of Kushtie, into toilet seats, shower chairs, the seated weighing scales, normal beds (you get the gist)

CUT to Wednesday 30th June 2021 — I went in the shower with a pile of hair slathered in hair dye gel all wrapped up in a makeshift shower cap (aka a plastic shopping bag from the local chippy – Recycling with class[!]). The “cap” was removed. I prepared myself to transfer into the shower from Kushtie, grabbing the two handles on each side of the shower chair. Like Always. Every Single Time I Use It.

So. Naturally I Never Expected It To Try And Injure/Kill Me…!!

It was REALLY Fortunate I was moving slowly (I was in a LOT of pain) when the Right Hand Drop-Down Handle gave an Almighty Cracking sound and Came Away From The Wall… If I’d been doing my usual “Fast Spin” turn into it, then I would have gone down like an avalanche

It’s truly Astounding that ANOTHER REFERRAL IS ACTUALLY REQUIRED TO GET THE BROKEN SHOWER RAIL FIXED BY THE CARE & REPAIR D****EADS WHO DIDN’T DO A PROPER JOB IN THE FIRST PLACE???!! THAT is what C&R Just. Told. Mam. about fixing the stupid thing…!!! 

I checked on my Journey Journal, when it was installed… It was 13th August 2019. So. It’s been in Less Than TWO YEARS…??! Nice one… Leaving ME now, WITHOUT A F*****G SHOWER…??!! AGAIN!!

.. YEH… NICE. ONE.

Hah! – Even then… It’s not even just ME who can’t use it, either! Lolli can’t use it, Dad can’t use it, and the dogs can’t be washed, either (they, on the other hand, might be bouncing to the ceiling with joy…!). Whilst Dad might theoretically be able to use the upstairs shower, Lolli and I will ABSOLUTELY STRUGGLE until this situation is RESOLVED

Back to where we were before. TWO. YEARS. AGO

After discussing it, we decided to see if we call the phone number on the Council Website for Social Care Contact.

Mam Came back from calling “First Point of Contact“… these are the idiots people you have to call for EVERY-LITTLE-SOCIAL-CARE-THING…

Someone called “Janet” (apparently) was “Nice” enough to Put In The Referral

THAT NEVER SHOULD HAVE BEEN NEEDED IN THE FIRST PLACE…!!

NOW… It’s Just. WAIT. And who KNOWS how long it’s going to be…?!

Here We Go Again…

GAH!!


The Autie & The Allergy (Silicone, This Time)

Well. And there was me thinking the most annoying part of finding out I was Allergic To Silicone was having my [First] Suprapubic Catheter implode, after giving me one almighty skin rash that looked more like I was being burned…

Huh. Apparently Not…

That Realisation comes when you also realise that the red, blotchy, marked skin with raising welts under your Smart Watch are from An Allergy To Silicone… As are the nasty red marks and peeling skin under your “Please Be Patient I have Autism” wristbands. SoNot Heat Rash After All Then…

Off came the wrist bands and the Smart Watch. The Very Helpful Smart Watch, which made it Very Clear when I wasn’t feeling too happy (Heart Rate in Triple Figures, Check…), or proof that I really had slept badly (I basically need a mallet to the face to take notice of such things, and this works)… AND The Most Important One Of AllThe Breathing Regulator. This has probably been The Most Helpful thing I’ve had in a Long Time AND it’s always with me, on my wrist. Well. Until now…

That Breathing Regulator was the Tool that myself and my friend S always use to help me calm down Extreme Anxiety and even Impending Meltdowns. Most important of all — I Could Use It By Myself, especially if I was alone and no one was around to help me [yet], it was something I could turn to for support and comfort, to help me try and control my breathingTo Remain In Control. It’s helped me keep hold of frantically-building Meltdowns coming from Extreme Anxiety or Panic Attacks… Long enough for someone to come and help me (I’m never completely alone right now; it’s too… Dangerous, really [sad face]…)

And now I realise I am almost burning my skin with this Silicone Allergy… I Am Without The Breathing Regulator… As well as being without a Smart Watch, and everything else that one does…


Is There A Needle Even In
This Haystack…??

For now, I’m borrowing an older Smart Watch that S still had, after upgrading — and amazingly, said watch’s band is actually made from PU Leather. But there’s a Problem… Or Two. One, it doesn’t have the Breathing Regulator. And Two…? It’s Baby bloody Pink… (!!!) So. No. I need to get another one.

I have considered re-strapping my Silicone one… But it’s already over a year old and it’s got a big crack through the middle. It’s better to look for a new one, really… And anyway, the newer ones would be better, right…?

Hah! Yes, that might be true if you want a nice shiny one with a Big Fat (or thin and flimsy) Silicone Strap! There’s Mountains Of Those, nowadays!

Stuck looking for a [PU / Real] Leather or Stainless Steel wrist-banded Smart Watch, the pool of choice is Significantly Low… Especially since what I want is Very Specific. And so far… Only ONE has ALL of what I wanted. Except it’s not nice. And designed for men – as in, the style of wristband inevitably means that it’s going to be too big, even at it’s “tightest”. And it did not have good reviews. But it’s the Only non-Silicone one to have a Breathing Regulator option on it.

There are barely a few others that have what I need as well… The headcount is not even in double figures.

And any other option means getting one that also has compatible stainless steel wristbands to purchase separately. And they cost enough on their own, without adding more expense to them. And I’m not even talking about the High End ones.

It does make it a lot more difficult to try and find something that might work when the sellers who put these items on Amazon insist on focusing more on the fact it has Social Media messages and ovulation trackers, than it does on whether it does anything else at all

The best ones I’ve seen is by mid-range companies Garmin & Honor, where some watches activate “short breathing activity” option, if your Obs come back high enough to be classed as “Stressed”. To actually have it offered up-front in a stress-out state would be immensely helpful… It’s just a shame that it’s way more than double the price of anything I could ever afford… But I am gratified to know that there are watches out there that can do that. still…

To actually find something that will manage to cover even some of what I want…. Well. It honestly simply feels like a lost cause, I admit…

It’s not even that it’s unavailable — it’s that they all have the Silcone bands. To make them usable, I then have to shell out for a non-Silicone wristband as well. Seems rather unfair, really…


Wheelchair Autie Vs Ticket Office

You know, it’s bad enough being a Wheelchair User when it comes to Public Transport. Adding my Fretful, Vexing, Social-Phobic Aspie Brain to that, means that it never goes well when it comes to using them.

Now, I am glad to say, in hindsight, that this was the only thing that went wrong with this journey, but it’s still an important thing. To me, anyway.

In fairness, Merseyrail have been the best when it comes to going on Public Transport, especially when it comes to trains (don’t even think about getting me started on Virgin Trains!).

However. There clearly needs some call for better training, when it comes to Automatic Entitlement to discounted tickets for certain Disabilities when going on their trains.


I am a Full Time Wheelchair User, so I get to use those special “cut out” sections by the doors, the one that has the flip-up seat. I don’t use up a chair.

Therefore (as I should be!), I was under the impression – and so it says on their own pamphlet “Helping Older and Disabled Passengers – that I was entitled to:

34% off Anytime Single / Day” Tickets
50% Off Return” Tickets on Merseyrail.

The policy on the Pamphlet actually states:

You are entitled to these discounts if you are: a wheelchair user staying in your wheelchair during the journey (the discount also applies to one person travelling with you)”.


And Yet, when I presented myself at the Ticket Office (located within a Convenience Store) of Liverpool Central Station, a few weeks ago, the person at the counter gave both myself and my companion (who was herself having to use a Rollator for mobility) Full-Priced Adult Tickets.

Fortunately, I was only getting the Anytime Return: Central to Fazakerley. I’m glad it was nothing over-expensive, otherwise I would have really been struggling.

I was charged £4.15 for “Adult Standard Class” Ticket. My Companion got the same one. I was charged £8.30 in total. Therefore I can be well aware I did not get the Correct Fare given to me.

And, yes: My Companion was also due the same Discounted Fare, as well: This did not happen either.

As an Autistic person, I have difficulty speaking to people at alland I would always prefer the ticket machine to a cashier any dayBut this is how you get your Automated Discount, so I swallowed my (chilling, nauseating, intimidating) Fear and Big Fat Did It Anyway.

Unfortunately, this time, my courage was for naught when we came away with our Full Price Tickets anyway.

I may as well have spared myself that anxiety attack and gone to the machine after all!

<p class="has-text-align-justify" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong>Because of my extreme social anxiety, and the fact we were running late to meet our designated train</strong> (<em>I  had already booked Assistance and I had a hospital appointment to keep</em>), along with our aforementioned combined mobility issues, it meant we had no time to stop and argue the point. So I didn’t. <strong>I <em>couldn’t</em></strong>.Because of my extreme social anxiety, and the fact we were running late to meet our designated train (I  had already booked Assistance and I had a hospital appointment to keep), along with our aforementioned combined mobility issues, it meant we had no time to stop and argue the point. So I didn’t. I couldn’t.

So, I picked up the aforementioned Pamphlet, just to check, because this what I always do; go to the ticket office and I get the discounted price. This may the first time I think it hasn’t happened. I wanted to check if it was an oversight or changed policy.


<p class="has-text-align-justify" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">Since it was <em>not </em>due to changed Policy, it would <strong><em><span style="text-decoration: underline;">HOPE</span> </em></strong>that this incident was due to <em>oversight or lack of training</em>; although it <em><strong>would </strong></em>seem that it is rather <strong><em>difficult</em> </strong>to have <span style="text-decoration: underline;">any </span><strong>oversight over someone in a wheelchair</strong> coming up to your till and <strong><em>not</em></strong> thinking they required one of the abovementioned <strong>Automated Discounts</strong>.Since it was not due to changed Policy, it would HOPE that this incident was due to oversight or lack of training; although it would seem that it is rather difficult to have any oversight over someone in a wheelchair coming up to your till and not thinking they required one of the abovementioned Automated Discounts.

<p class="has-text-align-center has-background" style="background-color:#ead8a8" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong>Clearly – <em>this is an oversight of Discrimination and unfair charging against its own Policies</em></strong>. I feel I deserve more respect and understanding than to be charged the Full Price when your policies dictate otherwise.Clearly – this is an oversight of Discrimination and unfair charging against its own Policies. I feel I deserve more respect and understanding than to be charged the Full Price when your policies dictate otherwise.

I do not take up a “normal” space, or sit in a chair. I cannot just waltz up to a station and get on any train I wish like everyone else.

I must pre-plan, call ahead within at least one hour, arrange myself to ensure I get the right train so I can be helped on and off the train at either end. Having to go through all of this also scares me to death.

The discount is justified and earned. To be looked at right in the eye, seen, then denied the rightful Fare seems preposterous; and not one member of staff can claim they “didn’t know”.


To be honest, I sincerely doubt I would ever have the courage to bring this oversight up, even if I wasn’t late for the train – I am generally far too frightened to speak to people, and especially to question or query something that doesn’t seem right. I am also very scared of going on the train, so I have enough to deal with there, without having to add anything else, as well.

And, to be fair, I shouldn’t really have to point it out or argue it, should I?

I am sitting in a wheelchair, shoving it along, wheeling it up to a counter far too high for me to feel empowered, or see the person or till properly, let alone comfortably reach the chip and pin machine to pay. I’m definitely not going to be getting out to use a seat.

There’s not really any question about my situation; therefore there should be no mistake in giving me the correct Fare up-front. I also even have my “Autism” lanyard on, so that’s obvious, too – meaning I probably won’t be engaging with people to tell them if they made a mistake.


<p class="has-text-align-center has-vivid-purple-color has-text-color has-background" style="background-color:#bbf7e6" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong><em><span style="text-decoration: underline;">That Staff Member/ Representative looked me right in the eye and stated the Full Fare</span></em></strong>, therefore my cynicism is piqued.That Staff Member/ Representative looked me right in the eye and stated the Full Fare, therefore my cynicism is piqued.

<p class="has-text-align-center" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong><em>I have seen that, in how much of a “mistake” it could have been; some people can be unkind. I was too afraid to say anything – for both speaking up, and missing my train, and being late to the hospital.</em></strong>I have seen that, in how much of a “mistake” it could have been; some people can be unkind. I was too afraid to say anything – for both speaking up, and missing my train, and being late to the hospital.

On the other hand, it’s not just me who wouldn’t say anything; plenty of “Neurotypical” people also wouldn’t like to “cause a fuss” or “be embarrassed” by challenging the person handing you your ticket.

Believe me, it can feel Humiliating enough to be in a Wheelchair, asking for help, always at the mercy of other “Better-Abled” people, having to “be different” or treated “special”. You don’t want to be up there arguing your Rights as well, causing more of a fanfare about your Disability/ies than you already have. Even if it’s for just £2.07 discount per ticket on an Anytime Return to Fazakerley.

It’s the Principle of the Matter that is important. Not the money, though it helps: It can be a financial relief, too, obviously, but what it also does is show respect for your position. It shows understanding. It is significant for more than the financial side of things.

However: To have someone look right at you sitting in your wheelchair, then make you pay full price for your Ticket, is immensely insulting… I’m not sure if anyone not in that situation understands quite how much it really is jaw-droppingly insulting it actually feels.

It’s not even just about Proper Training. It’s just about Being Respectful. Plain and Simple!

But there IS Following Company Policies. Giving the Correct Fare:

It is surely unthinkable that a walking person would be automatically given the Wheelchair Discount, Right? There would be all kinds of repercussions – as well as it being so Very Obviously Barmy!


It should be same the other way around, too!


“Black Heart” by DelphineMusic

~ Singer – Songwriter ~

DelphineMusic

DelphineMusic Tracks
& Vocal Tracks

Can Be Found On Various Albums At:

Including:


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…                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      


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