Tag Archives: aspie

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…


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.

🥺😢🥺🤬😖


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.

💖💖💖💖💖💖💖💖💖💖💖💖
💝💝💝💝💝💝💝💝💝💝💝💝💝


A Different Physio Pain: When NTs Harm Without Consideration…


I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.


Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.

No. Shame.

This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!

The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.

Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.

As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…” etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.

It. Hurt.

It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.



This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.

What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.

Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.

I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤

I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.

No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.

Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨

In other words, we can’t just manifest crap because we prefer it.

If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤

I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..

Maybe it’s the ASD. Maybe it’s just (or/andAlexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?

What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.



So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?

Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.


Pathetic.

To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.

I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.

I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.

I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.

I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.

It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.

There really is only so much that a person can take… and I passed my limit a long time ago.


A Victim. A Survivor. A Warrior.
Keep Fighting.


The Biggest Reality Check of All…

Someone I haven’t spoken to in a while over text sent me a quite innocent message yesterday, with Are you still alivewritten on it. A running joke when catching up after a while. It meant nothing, had no other significant meaning. They didn’t know it was not so this time.

This time, it wasn’t so funny. This time I really meant it when I wrote back, Yeh, just about

It was a literal answer… and one I was decidedly uncomfortable with. Especially when I didn’t tell them that, or why.

How do you answer someone else… Yourself… When the rest of the answer to that question is I could have died…?

I was desperately ill and point-blank refusing treatment and, well, in all honesty and reality, getting close to dying. Literally screaming myself hoarse in agony, until I was lost consciousness from the pain, for hours every day for a month, not realising my body was being attacked by a silent killer, tearing up my insides and leaving me barely conscious on a daily basis. But I still refused any help or medial treatment. The scars, the terror, the shame of the way I had been treated by medical “professionals” in the past meant I was too traumatised, especially in my current state, to go anywhere near them.

What an utterly terrifying thought… and nauseating right now, with 30/20 hindsight. I did it to myself. Unwittingly. But I still did it. And I quite possibly came a bit to close to maybe not making it. I became unreasonable, delirious, the agony too indescribable apart from being able to say it felt like actual torture.

Eventually, it seemed something in my brain snapped and I somehow, for some reason, decided to finally allow my parents to seek emergency treatment for me. I must have finally realised somewhere inside my subconscious my money was up and it was now or never, the last chance saloon. I don’t know because I don’t remember anything of that day except coming to around 5:30pm in a strange place, in a strange bed, somewhere that I only recognised as “a hospital”. Which or where I hadn’t a clue. My mother had to fill me in on the rest.

I was told I was dragged, barely conscious, downstairs and to the car, then taken to the out-of-hours GP service located in the main general hospital on Saturday 27th January.  The time on my discharge note shows it as being logged in to see them just after 12pm. They rushed me in to the Surgical Assessment Unit and ran tests, put me in x-ray and gave me a CT scan. They pushed fluids for severe dehydration and vast amounts of strong painkillers to stop me screaming. I was apparently there for five hours before I became coherent enough to come around, the pain subsided much, but still quite agonising – although nowhere near what it had been – and I had to be told what happened to me and why there were lines in my arm and why I was in a hospital. And especially the question, Which hospital?

After negative scans and intensive blood tests, it turned out I had blood poisoning and a “horrendous” [their words] UTI (urine infection). Specifically, I had contracted Staphylococcus and Streptococcus. And I’d probably had it for weeks, if not months. The entire time I’d been feeling very ill all the way to the point where I’d spent an entire month screaming myself into unconsciousness from the mind-exploding incomprehensible agony I was enduring.

I ended up being hooked up to some kick-ass antibiotics for 3 weeks before I was getting better. But us took 6 weeks before I was given the all-clear to finally go home with clean and clear blood with zero infections left in it. Even when the ococcus infections had been dimming down, I still got 2 other infections on top of it, and one of them remains an actual mystery to this day, but it was so bad I got a temperature higher than I’d even had with the blood infection – hitting 40.7˚C at its worst. They couldn’t find the actual cause (and they looked a lot) so they dumped me right back on the antibiotics (I’d just got rid of that damn cannula the day before, too!) for another week and a half or so.

So, I spent 6 weeks in hospital trying to recover from my stupidity. For the first couple of weeks I felt it acutely that it was a fight, a real battle, to get on top of this thing (or things) and get rid of it. Once I started to get the upper hand, it was a slow but assured ascent to the top of the mountain of recovery. A couple of minor setbacks is expected, and otherwise it was a fairly smooth ride, if not long. Very, very long…!

I was very lucky the people there were really good and helped me with my little Aspie quirks, and were quite happy to help and make it as easy as possible for me. I also  got a lot out of it that wasn’t just my life, or recovery too. I got actually got my life back in a different sense. Whilst I was there, I got more than I ever expected, and although the way I got there was, frankly, terrifying, I clearly needed to go there to get everything I got from it.

Institutionalisation, at certain points of extreme chaos, apparently suits me. It allows me to reset, obtain new and better habits, in a safe environment of regiment and set patterns. Whilst at hospital, their set mealtimes reset my non-functional non-eating habits that for a long time had kept blowing between starvation and binge-eating. Even stopped me being completely terrified of food after realising there were bland and basic things that could be eaten without feeling overwhelmed and shaking. I learned that some medication didn’t outrightly hate me and worked well – and for the first time in 4 years I had adequate pain control that did not require a distillery. It was such a relief. Even anti-nausea medication given alleviated the horrible nausea from the pain and allowed me to eat easier. Even Oramorph for when the pain momentarily got out of control again. Not one single side effect – just what it was made for, for a change.

I actually got people to arrange referrals for me to help with the fibromyalgia, as well as a few followups regarding what I had been through. This was the first time I’d ever received adequate assistance, support and referrals for my condition… and that was probably because this was the first time that medical professionals had spent 24/7 over 6 weeks to see what I was going through. I even had a wonderful OT (Occupational Therapist) organise my being able to see my dog downstairs whilst I was stuck there, and I ended up managing it twice, which was wonderful.

By the time I left, I really was ready to go home. As in I was clear of any and all infections, everything had been put into place, and I was going home with support and medication that was going to make my life easier to live with. It may not have been the best way to end up getting help, but somehow having a serious illness had managed to bring the never-ending freefall of Hell I had been spinning in, and send me in a completely new direction.

Yes.. Life Is Strange…

 

 

 


A Little Bit Safe

I’m finally back upstairs now… It’s been about 3 months since I was up here.

After a horrific time at the Premier Inn at the Black Cat, I came home determined to overhaul my room to make it more safe, more “mine”. We changed the room around yesterday, so the TV is under the back window, with the bed almost right in front of it, so it’s like a safe hidey-hole. It was a massive effort, and somehow, I managed to build the TV stand (with Dad) myself – which amazed me.

I immediately felt safe – something I hadn’t felt here since I arrived. It’s pretty amazing really.

Today I saw a new doc at the new surgery… and shares my birth-name, which is a pretty rare one, even in Wales. Like me, she’s also sensible, efficient, and knows what she’s doing, and does it the right and proficient way. She even shut me up and cut me off when I was going on, without apology.

She had a few home truths to offer regarding my tummy problems and my eating disorder(s) – namely that erratic eating patterns, starvation, binging, eating at random, all contributes to IBS problems. Which is obviously very, very true… and she gave me some basic antispasmodic meds to try to see if it helps with any bowel spasms that might be causing a lot of the issues,  given that the spasm causes backlog in the bowel, pushing gasses and yukky stuff back up, and causes bloating and pain in and of itself.

Also, because I have such a bad reaction to gluten foods, she’s giving  me a test for Coeliac’s Disease,  to rule it in or out. Oh, well… it’ll hurt to eat a bunch of gluten for it, but it’ll definitely taste nice!

The main reason to really go, though, was for the CFS specialist team referral. Which she did for me. It’s amazing how easy it is to go to this surgery… I’m so sad I didn’t go there first…​

20141027_000017000_iOS

 

Weather’s getting worse now – another reason I hastened changing my room, because the tent now blocks cold and draughts coming up from the hallway downstairs. I’m getting constant alerts for Weather Warnings on my phone, mainly for ice, as temperatures continue to plummet. No snow yet, but I wouldn’t be surprised if we had some.

It’s of course wrecking havoc in my Fibro, and (very unfortunately) my temperament. But that has been somewhat tapered with more calm from changing the room up into a safe little den, or Hobbit-hole. I’ve managed t be inspired to do this just in time before being frozen. Now I’m safe, comfortable and toasty-warm  in my room, and I’m actually happy to stay here for the first time.

To top it off today, I also got a new tablet/hybrid: The Lenovo Yoga Book (2-in-1 2017 edition) today. I’m sick to death of Apple (don’t get me started on them now!) and saw this and thought it was pretty cool and more like what I needed, but also more…  modern, techie, innovative and imaginative.

It also runs full Windows 10, has a hybrid pen that has a stylus pen for on-screen drawing and real ink nibs available to write on supplied special paper, which gets transferred into the system via the pressure plate that sits where the physical keyboard usually is. This plate also doubles as a holo-keyboard, known as the Halo Keyboard. It appears as a hepatic holographic or Augmented Reality virtual keyboard on the aforementioned pressure plate, and takes a bit of getting used to, especially as a touch-typist.

My Dad is getting my iPad, and with it being excellent condition, he’s getting a good deal! Instead of buying a new iPad for himself, he’s got me this, which was nearly half price in the Amazon Cyber Monday sale, at £299 (supposed RRP £549). Hopefully this now means everybody wins…

lenovo-yoga-book-windows

 


The Tribunal Dilema

My PIP “mandatory reconsideration” was a few weeks back now. Ever since I’ve struggled with extreme pain, illness and stress. There have been two huge storms. My niece was born prematurely. I’ve been under such enormous stress from all angles, I’ve just broken down. I’m being tested for CFS/ME. My Hemiplegic (and normal) Migraine is acting up. Don’t even get me started on the Paraesthesia. I’m a wreck, and only getting worse.

Thoughts of a subsequent Tribunal took a backseat. This is not a system that helps those desperately ill, exhausted, crippled, mentally drained and disturbed, or have chronic illness of any kind. This is a system only designed for those who are robust enough to endure it. The hypocritical irony would be laughable if it didn’t destroy so many lives.

Thusly… Now I think it’s just not worth it.

I’ve been asked about it and I’ve thought about it, especially having written my part on the Parliament forum about it. However, how can I justify – and better still, how can they justify – putting myself through applying for a Tribunal, going through the immense stress, strain, pain, anguish, and super-hyper anxiety that would go with it? As one person on the forum put it, the entire thing is barbaric.

However, both the PIP woman and the Mandatory Reconsideration knob lied through their teeth when it came to summarising the case they put forward. How do I let them get away with that? How can I stand by and allow them to desecrate what I endure every moment of every god-damned day? How can I let them be so crass, derogatory, hurtful, harmful, and not put their words and myself in front of a Tribunal?

I printed out the “booklet” for writing up the form for applying to the Tribunal. It’s 35 pages long and just huge. How are people like me, and especially worse, supposed to be able to manage to read that and write up their form? It’s not like the DWP or PIP have people available to assist in writing them out for you… Instead you have to go and hope the CAB has an opening for someone to assist you. Or if you’re like me, write the whole thing out for you too, because [hand] writing is so hard. Way too hard. Typing is hard enough.

I return to Spoon Theory. I like Spoon Theory because it makes sense, it’s logical and it’s about number and not feelings. I am in “Spoon Bankruptcy” right now – if it were a currency, I’d be homeless and living in a box.

I don’t even have the Spoons to even go to the bathroom, I need help with even that now… So what Spoons do I possibly have to concentrate, study, and then write up the Tribunal form… even before the anguish and stress of not only waiting for the reply, but then having meltdown after meltdown worrying about it before I go, more meltdowns after I’ve been, and then more after that as I wait for the result. And no matter the result, I’ll have a meltdown because of it – because at the end of the day, it’s emotionally all too much.

This system wasn’t built for people like me… i.e. the chronically ill. You know, the people it’s there for… We struggle with enough, that’s why we need it. It’s even worse for those with emotional and psychological difficulties and understanding. There is no excuse in making matters worse, making us more ill, by having such a flawed system it punishes those who need it the most. Those who are healthy are the ones who can get whatever they want from it, because they have the physical and emotional capacity to do whatever the hell the system asks them to. We don’t. It’s messed up completely.

Should I take this to Tribunal? Oh, with jingle bells on every toes I should. However, in doing so, I am jeopardising my health, my psychology, my conditions, my family life, my parents’ health (and they’re over 60 now). Do they take that into account when they do this to you? Hell, no. I am torn between protecting what little I – we – have, and doing the right thing.

It’s my very own Kobayashi Maru… and I don’t think there’s any way of cheating in this one…

 


Oh. Dead. Lord… I’m Surrounded By Idiots…!! 😣😱😤

I just don’t know what to think. Or how to properly identify or deal with these feelings… Incensed? Angry? Horrified? Hurt? Sad? Violated? Victimised? Traumatised? Grief-Stricken?

Who knows…? I certainly don’t.

The PIP Fiasco Continues still… I read the full case notes the unebelivably horrible woman I saw at PIP wrote… and it’s vile. And lies. And I literally cannot believe it. As in it’s unable to be fathomed.

After all her (turn out, disingenuous) pandering and “Oh dear!”s throughout, serious nodding, and looking very sympathetic, it turns out she was writing mainly made up crap and copying and pasting the same sentance over and over again. Typos were everywhere, the omitted “not”s in can not as well as the “un” in unable. She made it look like I was a step away from being perfectly fine and perfectly able to practically hack myself into the Pentagon… It was just such a load of crap it was rediculous.

She was in a rush when she wanted to write it up (quickly, of course…) and just made up crap about me. Withheld vital information, omitted context, and even didn’t acknowledge my mother was right there with me, helping me work out what she was saying, communicating my difficulties, backing me up. And she even spelt my mother’s name wrong, even as my mother spelled it for her. Astounding.

Incensed (I think), I spent four days creating a 25 page rebuke with long lectures about victimisation and outright lying and omitting relevant data. It was detailed, concise and at least true. Let them put it before a judge were they can see and make a decision themselves, with firsthand interaction with me. I’m much better off. I was last time, they kicked the PIP and DWP’s assess and gave me a monumental backpay.

It took them over 6 months to get me an appointment (4 months later than the maximum target they themselves have, very clearly stated on their own answer service). But because DWP will only pay backpay to when the appointment was, that’s all you get. So I got one month backpay, even though they sent me that damned form to fill out back in January. I hate them all… They’re just *insert many expletives*…

It hurts to be victimised like that. It was horrible what she wrote and how she wrote it. Saw she added things in about how I could do this or that when she could see I couldn’t. Outright lied about other things, and (hopefully) misspelled things without “not” and “un” (as abovementioned).

So I hope they suck on those documents I sent back and choke on them… They hurt me badly, and the stress has already greatly impacted the severity of all my conditions, and I literally cannot cope. The entire thing makes no logical sense, or even is within bounds of basic imagination… And frankly, if you’re going to screw me I’d like at least one drink first and a bacon sandwich after.  But not this.

The one postisive side was she was forced to give me “Higher Mobility” because I have to have round wheels now instead of using my legs. With that I get a little more money, but there are other benefits like being eligible for Motorbility, or getting 100% off car tax on a normal car that’s used for you. So we’ve used the car tax discount for now whilst I research what benefits Motorbility offers instead that’s any better (if there is anything better they offer) than what my parents do now with their cars, and whether it’s worth losing that money to them in lieu of a (hopefully) suitable car. Since I can’t drive, this may not be of benefit right now.

On top of that, I’m still also trying to get some sense out of Ableworld Specialists regarding my chair (Friefly). The Sales Rep (who told her it was simple to email her with other requests) refuses to talk to me nor answer her emails. She’s made a mistake with the Centre of Gravity (COG) on my chair, as well as the length of the seat, and now she refuses to acknowledge me.

The one and only time I got her on the phone she spoke with brusque, rude, and semi-indignance (I think – I know it was rude) and barely even discussed it with me. Ironically, she had a rebuke about changing the COG and tipping too far back, when the reality is because it’s too far back I tip forward because it isn’t balanced. Since it’s not her sitting in it all day every day, she should really listen to the person actually in it.

So I sent a complaint directly to customer services. And because she never answered my last email, I’m naming names, because I’m tired of chasing her unprofessional ass through Kingdom Come and back. It was a fairly extensive and detailed email, and I’ve told them to reply within a certain time, with the BHTA to come if they didn’t fix it. So I really hope they do it, because I don’t want to contact even more people.

This is already far and away too much

 

 

 


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