Tag Archives: north wales

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.

🥺😢🥺🤬😖


Please Make The Stupid People Go Away… (The PIP Fiasco Continues…)

It’s come to the point of I’m getting scared of what’s going to happen to me next. How much the people out there who are supposed to help you are not only just going to ignore you, but they’re going to kick you in the nuts when you’re down, too. With Jibgle Bells on their toes.

Two bad things happened today, and I’m wondering how much more shambles there’s going to be in out beloved Health & Social “Care” system before most of this place falls apart because no one can get the help they need to be even vaguely productive. Or even alive.

The DWP are even worse than a joke… It’s almost like they’re in the business of causing as much suffering as possible. Constantly, consistently, and completely.

I have tried and I can’t find anyone else quite like me… and it seems that because I’m quite unique everyone wants to put me down. Even downright lie.

Today I got the PIP assessment outcome. Turns out that they give with one hand and take with the other.

Firstly, I finally got the “Higher Mobility” component – lets get the one single good thing out of the way.

20160701_221010000_iOSSecondly, it turns out they lied outright on some of the “Daily Living” parts, leaving me with the same “Standard Daily Living” Component. I know this because I called the guy who looked at the case and made his decision. He explained what “evidence” he had been given by the person I saw… and it turns out they omitted some things and downright lied on others. They hadn’t listened. Clearly rushed the report. Missed giving them vital evidence and letters. Misheard or misreported what I had told her (how the hell am I supposed to be able to be able to still code and do my own sites etc “competently” or game when I’m like this???!). She even missed giving them verbal communication and somehow “saw” I had “good” dexterity – whatever hands she actually saw, I totally want them instead! 😤😡

In hindsight, she was all “Oh I’ll do this right now for you so it’s all done and with them”… and ergo clearly rushed it and did not do a good enough job at all. Or she was just mean. Either way, I got screwed.

When I called, at least the guy on the other end was willing to put me into the first stage of Appeal (some sort of re-review). He stated he would send me a copy of the main report, and I was to note my responses to them and why they were wrong. I was also to send a copy of the letter from the neurologist regarding the Hemiplegic Migraine diagnosis.

You know why…??

Because that inebriate I saw negated to send the diagnosis letter I gave her or mention it whatsoever. At all. It wasn’t even in the notes. We talked extensively about it.

So I’m hopping harder than a bag of frogs, and as pretty furious as my emotions will allow me to be without going into meltdown.

20160920_173759000_iOS

Now… You’d think the horrible would stop there. But, oh no. This is my life we’re talking about. Sod and his Law wasn’t done with me yet…

Next, the letter that came with the PIP letter today was from a stock and repair centre for basic mobility. I was wondering why they had sent me what could possibly me the least specific, least helpful letter ever.

I understand from our Approvved Repairer that they have not been successful in contacting you to arrange an appointment to either deliver/collect/repair equipment etc., [sic]

I hall be most greatful if you will contact [them] to agree a mutually convenient deliver date and time.

I had no idea what it was about… Who the hell would? So of course I rang them. And the frogs swallowed a Tigger and they started hopping to the roof.

I had never been contacted by these people before, so what the hell were they talking about? Well, it turns out it was for a wheelchair. Some off-the-peg piece of crap they had probably dug out of the back room. You may be unsurprised to hear that was not the agreement nor what I requested whatsoever.

I had asked the physio (a wet blanket if I ever saw one…) to be referred to ALAC (Artificial Limb & Appliance Service) of Wales (based in Wrexham around here) to be assessed for a proper wheelchair for my long term needs. What do they do instead? They don’t even contact me, sending some nightmare chair to their distribution and delivery centre without even talking to me first… I cannot explain just how bad and unprofessional that is.

Let’s just say if that was a professional private company, they’d have their ass handed to them via the serious complaints system of the corporation. My mother is still a professional nurse in a care home, works with them all the time, and even when I told her, her reaction was… “What?? Why?!” It was three ways from Sunday deplorable. And of course I told the service centre guys to send it the hell back.

My reaction was absolute astounded horror. Actually, that doesn’t even cover it, but it’s the closest the English Language has, I think. I couldn’t even think or move (well, as much as I might be able to anyway). It was a good thing my father was home. He helped calm me, then I spoke to my mam at work so she could give me some decent jargon to throw back at them. But when I was all ready to go, no one even answered the phone. All I got was voicemail. Frickin voicemail. On a Friday early afternoon. Talk about a message of “bugger off and don’t spoil my weekend”…

Thus I sent them a rather lecturing and detailed email. With big words. Well, they asked for it, the buggers.

I’m already struggling with my own current wheelchair (do not ever go to Ableworld Specialist Department – they’re rediculous and pathetic, and I wish I had never, ever chosen them to get my chair though… They do not know what they’re doing 😤 They ruined my chair measurements and centre of gravity, got fittings wrong, and did not give me what I asked of them… And now they’re arguing with me about it!!  😲 ). I did not need all this as well. In this country [Wales] they are not taking disabilities, ASD, or chronic illness seriously at all (except for a few professional individuals). I’m 36 and struggling. I should not be struggling, illness and ASD or not. It’s not right or fair or even logical to stop people reaching their potential because you just get in their way.

… My answer is what I have come to call The Queen of Darkness. With age I realised that this part of my Aspie (as I know it to be now) took over and just barrel-rolled over everything and everyone in her way. Darkness is her home. Bad things are her air. She fixes the wrong and doesn’t take crap from people. She [I] made it clear that “no” was not an option. That walking over her was not an option. That being an idiot wasn’t an option. It’s something that came out of me through necessity to survive my later teen years and 20s. Then… “She” disappeared.

Perhaps because that part of me was no longer needed. However, now it seems that she needs to return. So I guess someone’s going to have to put her Big Girl Panties on and get serious with people and life again. Otherwise I’m never going to get anywhere.

If there’s people out there who can lie and rig the system to the point they can defraud the DWP for years, there is most certainly a way to package the truth to also get what I require to help me live my life. To save my life. To get the same thing, but for real reasons. It’s certainly not right that I struggle so much, and these struggles get pushed under the carpet by the PIP people without another care in the world, as if they – if I – do not matter.

Nope. Not OK. At all.

She’s coming now to kick their asses. Hard.

 


Sunrays Through The Clouds…

PIP Day.

It went pretty well, to be honest… which has shocked me no end. I felt confident going in, the day was lovely, isobars were right up at 1025mb, temperature around 23ºC, I got there early… Everything executed astoundingly well. We got a little lost, because it’s in a weird place by the Menai Bridge, to get to Anglesey, but Google Maps sorted that one out.. 😉

We actually went in right away after we got there. We were early, and it looked like the assesseor was ready to go hom early. So we were able to go on in about 20 minutes sooner, which was great.

The woman I saw was really nice; a real nurse. She was sympathetic to my situation and could see what was going on – and seemed shocked that I didn’t have everything set up already, given this has been going on so long. She was also shocked when I pointed out it had taken six months for PIP to get around to seeing me after seeing my application. All in all, she seemed on “my side”, which was of course a huge difference to the previous idiot I saw, when I first got PIP.

She talked to me, listened to me, took my 14 page “dossier” of every detail I could think of that I’ve recorded and updated as things have become worse. What I didn’t remember, couldn’t say, or couldn’t portray properly, was all in there, so they had all the information they required right there, so they didn’t have to remember everything. Hopefully, it came in useful.

I was amazed it seemed so easy. That she made is so easy – she was lovely, affable, friendly, talkative, and your typical nice nurse, really. I was very lucky to get her, really. She made it easy to talk to her, was familiar with the neurologist who diagnosed me, and seemed very well-versed on my Asperger’s. I’m not used to that!

I hope I will at least receive a fair assessment this time. She seemed to understand the situation, at least. All I want is for their official paperwork to reflect what I have to go through, and not undermine it. She said she would get the report sent out by the end of the day today. There’s a chance I could get a PIP rate that reflects my circumstances, rather than one that undermines it. If they’re as fast as she is, then I will hopefully get the upgraded PIP level sooner, too.

… Yeh, OK, probably not, but you never know…!

 


Waiting For The Axe To Fall…

So… today is the last day before my PIP re-assessment. Needless to say I’m terrified and freaked out.

They’re not nice people, and their job is to try and find ways of undermining your suffering to make sure they don’t have to give you money to live on.

Thus, I am not looking forward to it. Funny that.

Today has already been a nightmare without even factoring in that hovering over my head like a black cloud on Eyore. The isobars have been on the floor again (1007mb) and I could barely move my fingers, let alone myself. It was a big struggle, and although I am glad I got some things done, I am not pleased that I did it. It was really difficult, painful and completely draining.

img_0886It wasn’t even anything big… Well, it was to me, given the weather (torrential rain and chilly), but in and of itself it wasn’t big. I was barely able to get out of bed, or downstairs to my chair, or function. So doing this did feel like a huge mountain to climb.

I was in constant panic attacks and major anxiety (and I still am – my mother, a nurse, came up with a clever way of helping me by emulating the paper-bag trick but using my inhaler – taking it without actually using the pump… it works!). Eventually, I managed to get myself together enough to go out to the new Waitrose in Chester, so I could get some good food to get more nutrition and look after myself better. The place was great and I got some lovely things, including fruit to go in my new Purition protein smoothies. Now I’ll at least have an entire week of nothing but good, wholesome and nutritious food, with my new mountain of fruit and veggies from there.

Unfortunately, it was also extraordinarily exhausting to do this, and by the time I got home I couldn’t even function: I could barely transfer from the car to the chair, I fell when I went to the bathroom, and I had multiple panic attacks. I have no doubt I will not be going to sleep at a reasonable (as in before 6am…) hour – although I can’t imagine what I am going to be doing with myself now. I’d like to think it would be playing games, but I can’t see it somehow…

On the up side, I finally got the Mass Effect Andromeda Loot Crate that I pre-ordered back in March… And it was well worth the wait!

  •  A Gorgeous Pathfinder hoodie
  • 2 lovely plastic children’s(esque) cereal bowls emblazed with the Mass Effect Andromeda Cereal logo around it (especially for geeks!)
  • 2 gorgeaous, heavy (real) whiskey glasses embossed with the logo of the Nexus’ club, Vortex
  • An adorable model of the Nomad
  • An Andromeda Initiative Medalian Coin (huge and heavy!)
  • A Pathfinder Patch
  • Pins of Tempest and Andromeda Initiative
  • A [short] Dark Horse graphic novel: Mass Effect Discovery #1
  • A Normandy Datapad-shaped card with all the details of the Crate on it

I was amazed by it – it was really so nerdy! Worth the wait and the price. I’ve no doubt I will be hiding that hoodie as soon as winter comes! 😋🤓😎

And now… Well, I just wait. Wait to go and face the guillotine that is Capita, PIP [Mis-] Representatives.

Oh, Lordy, I so do not want to go!

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Never Rains But It Storms…

On 14th February 2017 I received a text message to state that a PIP update form I sent them two weeks before had been received. Today, on an already-terrible Summer Solstice day, I received a letter package from them – over four months later – to go and see them next month.

I’m scared about this. I’m barely managing as it is, and this is terrifying. You hear on the news of these so-called Health “Professionals” being downright terrible and respectful, even abusive, about their “clients”. About them meeting targets by writing off the sick and the vulnerable. About how they force you to go to tribunals to get what you deserve. What little that is, anyway. It’s not like PIP is a liveable amount, not when even simple things you need are so expensive (clearly no one at PIP has ever been to Ableworld or had to personally finance things the NHS either refuse or never get around to). They’ve even written off a friend, taking everything away, despite her having all the evidence and more required to prove how ill she is.

It’s a terrifying prospect having to meet them again. The last time was several years ago, when I lived in London, about a year after I  became ill. It was one of the most stressful times, and my best friend was my amazing rock and I will be forever grateful to her for all her help around it. We travelled to some place I’d never heard of quite far out of London, and had to pay (a horrific amount, about £90) for a cab both there and back. I had to go in my first god-awful wheelchair, which was so uncomfortable, and we were forced to wait for hours to be seen.

I was so ill when I went in to see the person – some guy who was an uninterested and arrogant sod, who also took no interest in the fact I was there in a wheelchair and clearly traumatised. I shouldn’t have gone in there alone, but I did… and it was only to my detriment. He basically lied about a bunch of crap, played everything down, and then the outcome was I barely scraped enough to cover basic Standard Daily Living. I saw red, got help to make an appeal, and my friend and I eventually went to a tribunal. They awarded me Standard Mobility as well, without question. It’s was so horrifically stressful to go there, but at least this time I saw three older, highly intelligent women who had reached the top of their professions. To them, it seemed it was a no-brainer.

So… I’m not looking forward to seeing some other inebriate again.

Arguably, I can at least say that it seems like they read my dossier that I sent with my update form. I rather expected they wouldn’t. It was rather the tome… But in the 4 months hence, things have become even worse, to the point – as we all know – where I’m imprisoned in my own home until I (eventually) received the special chair that was ordered. You know, the one that’s not going to try and kill me. I even had to push back their original date (3rd July) for another, where – hopefully – said chair will have finally arrived (with the new date being on 12th July). So… in three weeks’ time then, give or take. That better be long enough, because if I have to go in the other one, I’ll probably just die and it won’t matter what the hell they think then.

Once again the paperwork has to be dragged out (another tome of reading!) for them to photocopy (Lols… their time and dime, and karmic punishment, quite frankly, for not realising it’s the 21st Century and everything’s digital) and hopefully read at least some of. I’ll throw in pretty much everything for good measure – I always do, you never know what rubbish they’re going to be looking at whenever these things turn up. At least then they can’t complain. Or say you didn’t tell them, finding a nice, tidy loophole to wriggle right out of. It’s bad enough that my chronic conditions are weird and no one understands them. Hopefully, these whackadoodles will, and will see that I unfortunately cannot manage their general expectations of someone who qualifies for “Standard” anything on this.

I honestly don’t care about the money. Yes, given how ridiculous prices are compared what you don’t have to spare, money can be rather handy. However, I prefer the recognition. Where they stand there, nod, and acknowledge I go through this, that I must live and struggle in this way possibly forever. That’s what I really want.

It’s wasn’t as if today wasn’t bad enough, before all this, having not slept all night due to paraesthesia and hyperactivity due to my confinement (again… Haven’t slept properly in probably a week) and suffering “Isobar Flue”, thanks to them dropping down to 1011mb and bringing huge storms along with them to suffer with. The storms are on their way as I write. I hope they’re not bad enough to be named… I certainly do not require such turbulence now… nor am I now in any position to cope with it.

I’m so upset now, I’ve got through at least 5 gluten-dairy-free chocolate chip cookies. At least there’s no ice cream…

 

 


Practical ASD Assistance In Wales

There is not a lot of ASD assistance in Wales. The usual people haven’t really come through, particularly in North Wales. Having moved here from London, I’ve been astounded to find there is actually nothing here. And I mean nothing.

Zero. Zilch. Null.

Whilst there is stuff in the South, although predominantly only around the Cardiff and Swansea area (as if the rest of the entire country doesn’t exist), the rest of us are generally ignored. There is no help out there… unless you’re under 18, then perhaps there’s at least a little. For adult? Nada.

In compensation, there is a website, for ASD Info Wales. This has a few things that can be of practical self-help, and it does have a good amount of documentation for people with and without ASD to assist with life and interactions.

The ASD Planner – found at ASD Info Wales – is a good example. It’s an app for Android or iOS which is an easy and useful “tool” to use to help deal with situations that may arise… rather like a cheat-sheet for things.

 I’ve found it useful, so I thought I would share it.  🙂

 


MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.

 

 


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