Tag Archives: fibromyalgia

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.

🥺😢🥺🤬😖


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

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

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

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

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

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

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

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


Painsomnia

 | 15°C

Painsomnia… Aptly-Named...

 

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

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

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


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

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

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

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

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

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

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


Just… Isobar Nightmares Again..

 | 15°C

More Storms…

More Miserables…

More Skydiving Isobars...

 

This is what I have to look forward to Friday through Saturday, now…😟🤯☹️😖😣😥😢

 

… To make it worse, all of Friday is in the 900s too…

#weather #pain #isobars #anxietyPowered by Journey Diary.


Surviving Trauma with ASD

My Story… My Life…

The Second Time My World Imploded into PTSD…

When I was 34, literally my entire world fell apart. I was so ill I couldn’t move and was in 24/7 agony from Fibromyalgia, and after 2 years of this illness and 10 years together, my partner snapped and she sent me home to live with my parents. Actually, she asked them to come and get me.

Just one random day. She stopped texting me. Then vanished. Never came home. I freaked the crap out. Turns out she went to her mums house. I had to track her down. And her step dad was a bitch to me on the phone.

Then she told me everything was done, we were done, and she wasn’t coming back until, I was packed up and ready to go.

My. World. Died. And. Ended. In. That. Moment.

She took the last remnants of things I had left — and I had already lost the career I loved and the data migration project I was just about to start. And destroyed them. Just one random day. Just like that.

It was nearly 4 years ago, this November it will be.

It was utterly sheer hell. I didn’t know if or how I was ever going to survive. I was delirious with agony and pain, screaming and blacking out from it every day, my parents were yelling at me, screaming at me, doing other bad things at me. I had several meltdowns per day. Everyday. The worst ever kinds. I used to come round to disaster and injuries I had no idea about constantly. It was horrendous…

It went on for years… I tried to OD twice. Was in an ambulance for it. It was a waking nightmare of exceptional proportions.

I don’t know how or why I am still here… But I am. And, frankly, I’m proud of myself for that.

And I survived long enough to get a very special person back in my life. And it’s in a better way this time too …. 🤔

So… I get it. I truly undoubtedly do.

And, also, that is how I know that others can survive this. Because I have, I do. We do. Cos we’re strong and kick ass and have to take far more than anyone could ever frikkin imagine. All. Day. Every. Day.

💖💖💖💖💖💖💖💖💖💖💖💖
💝💝💝💝💝💝💝💝💝💝💝💝💝


JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞


TMI

| 9°C |

Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.

I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.

Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.

I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.

I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.

Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end

Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming MeDestructive, Harmful, Destroying.

I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy

The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.

Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.

These Feels are… Heavy… And I don’t like them. I only want them to go away.

#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration

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