Tag Archives: NAS

ASD – My Hospital Passport

Whilst doing some digging and research regarding ASD and visiting GPs – after today’s fiasco – I found out about this:

  

My Hospital Passport:
http://www.autism.org.uk/about/health/hospital-passport.aspx

 
 
The NAS created this alongside NHS England, who actively encourage its use under their “Think Autism” scheme.

I’ve had a look at it, and it’s pretty good.

I filled it in, using the added notes they offer with it. It allows you to say quite clearly to health professionals in any setting how your ASD affects you and what communication methods you prefer. It’s designed with hospital in-patient situations in mind – given how extraordinarily stressful and disruptive they are – but it’s perfect for any contact with healthcare professionals.

Because it’s a PDF file, you can either fill it out on an app like Adobe and then print it, or it can be printed and hand-written. It’s easy to use, and the notes explain anything that’s not entirely clear.

I wish I’d have known about it before. Alongside the Autism Alert Card and Autism Awareness Cards, this day might have gone easier.
 
Adults With Autistm

 

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Never-Ending Nightmare

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I cannot even explain how exhausted I am. Meltdown after meltdown – horrific ones – just don’t seem to ease, running into each other, causing complications that cause even more… It a nightmare that doesn’t seem to end. Pain, confusion, exhaustion, [on top of my usual] fatigue, disorientation, pure terror.

All apparently starting from a generic cold/fine virus I got… which  I completely missed, because the symptoms are just like a Fibro flareup: extreme temperature changes (often caused by my pain), aches, stiffness, fatigue. But the grogginess and disorientation that came with it should have been warning flags. The unfortunate thing was I was also in the middle of a rather big flareup at the time… It’s all been a nightmare.

I “black out” during meltdowns. I have no idea what’s going on, what I’m doing, what is happening around me or to me. I also don’t remember afterwards what happened either. There’s simply no memories being put down, so I haven’t a clue. This time, after I didn’t “come round” properly from it, I though it strange… then after a while I found bumps on my head, and when someone checked my head, found the top of my head not only had a few big bumps, but it was also bleeding from some cuts on it. Then I realised what was wrong with me… and old memory and familiarity: I had concussion. Groggy, slurred speech, confusion, disorientation, sleeping constantly (I never sleep; even at night I barely sleep)…

I’d been through this when I was 16 and had a horse riding accident, banging the back of my head quite badly and knocking myself out for a few seconds. I fell off backwards, hitting my head first and hurting my neck while I was at it. My back, hips and sacrum came down next, damaging my lumbar area. The cost of that accident has been lifelong… and the memory of concussion was one of those. It was a jarring realisation, but at least I knew what was causing it.

I’m lucky my mother’s a nurse. She checked me out, was happy(ish) with what she saw – pupils reacting and even, BP normal (for me, anyway), pulse fine, general consciousness OK apart from grogginess and some confusion, memory was OK (didn’t forget what was going on, meltdown notwithstanding). If she wasn’t concerned then I was not either – although to experience the side-effects is pretty scary. But I’m experienced enough after working as a Nursing Assistant/HCA for many years to know what’s right and to trust your nurse, and she is definitely one of the best (no I’m not biased, I’ve worked with many of them over the years and just know a good one…!).

 

Learn The First Time…

This same thing happened before, with the due to the very same problem. I missed it again, and I wasn’t looking after myself very well. I missed another trigger-point, the warning signs, everything.

Now there’s a new(ish) “rule”: Juiced drinks or smoothies every day, especially smoothies including vegetables and extra minerals if unable to eat properly (the pain depresses or muddles my appetite quite often). Back in London, I learned to use this rule and stuck rigidly to it, and my health was pretty good. I didn’t miss a day of anything from cold/flue viruses for the longest time, and even my asthma and temperament were better regulated. This is now being reinstated – I’d rather be healthy and broke than go through this again. Ready made pure juices smoothies like Innocent, Cold Pressed, Tropicana, etc., are difficult to afford but are clearly vital.

It’s hard to learn the triggers – I’m not exactly an “old” dog, but after spending over three decades trying to ignore and deal with certain “idiosyncrasies” of myself, it‘s so very hard to realise I have to be very aware of myself, and to understand that I can no longer be complacent or dismissive of them: they’re signs and “idiosyncrasies” of the Aspie in me, and they need to be looked at and checked for general trigger points. Illness has always (unknowingly, but quite clearly in hindsight) been a big trigger point for me. Add that to already learning to deal with another illness, a severe and debilitating condition, and it’s just going to be bonfires and gasoline. Taking the viruses out of the equation is an absolute necessity. One horrible illness at a time is enough for me, thank you very much.

 

Learning Curve

Learning all all these things comes at great cost. Emotional turmoil. Relationships. Exhaustion. Coherency. Injury. Concussion…

It sometimes just doesn’t seem fair that it’s possible to leave and ignore someone with such difficulties without assistance. I’ve been ignored or dismissed, or just lost in the system, my entire life – and it’s no different now. When I was a child no one had even heard of Asperger Syndrome. By the time I got the diagnosis I was too old for help – the buzzwords surround only the children these days, and adults are ignored. It’s even worse in North Wales… Everyone is ignored. Even the NAS (National Autistic Society) has virtually no resources invested here; everything is down the south coast, around Cardiff and the Brecon Beacons. They can’t even answer the phone.

Don’t even get me started about the local NHS and Betsi Cadwaladr health board… They haven’t even heard of their own backsides, and are medieval in their treatment of any psychological/neurological/mental health situation. But then, North East London Foundstion Trust was worse… so it seems a little petty to complain. At least coming to this area was a microscopic step up, though I miss my old GP immensely. He was a real gem when this all started and went to hell in a hand-basket.

This learning curve is painful. Physically and emotionally. It’s destructive. It’s mistake after mistake… A never-ending nightmare of never-ending meltdowns. Exhaustion, pain and confusion causing such extreme fear and terror they cause unimaginable meltdowns that are clearly very destructive. I am apparently can pose possible danger to myself and others, frightening me even more – so not helping there, becoming a trigger in and of itself. I am lost and I do not know what to do.

I have more coping strategies. I have more information. I have piles of beanie toys, which help me try and stay calm and comforted. But there are always new or unexpected triggers. Or everyone else is tired and not able to deal with me. They’re mean and get horrible with me, making it worse, escelating things, scaring me even more. I feel so alone, even more so when this happens. I have nowhere to turn and no one to really talk to, no one to help, no one to give guidance regarding understsnding my ASD and how to deal with it and Fibro.

The meltdowns were actually quite well controlled until I got ill [with cold/flue]. So I feel really bad it slipped past me – yet it may not have if I wasn’t already in a horrible fibro flareup already. But that probably helped cause it, destabilising my immune system and not allowing me to eat properly. I did not turn to juices/smoothies to increase my nutritional intake, and thus became ill. When I was reliant on them I had no issues – somehow the significance of this fact passed me by, not equating it to being able to help me now.

All I can do right now is hope that each costly mistake will have a return for the cost. That lessons will be learnt, better strategies or help will come from it. That there will be something to offset the hefty price. I’m currently paying for it with nightmare days, broken relationships, a broken family, multiple seriously-painful bumps on my head, multiple cuts on my head, concussion, emotional fragility, inability to cope, mild depression, suicidal thoughts, extreme pain, feeling confusion, feeling lost and alone.

And no, I still haven’t received any help. But then, I never have… so I hardly expect any now.

I keep asking, keep looking, keep hoping. But I’m starting to see it’s really nothing but a futile idealism now.

So I just have to keep paying the price… But my account is now severely getting into debt…

 

KeepGoing

 


Ripping The Scars That Bleed

When people say “It won’t be as bad as you think“… I wonder if they ever imagine that it won’t be because it’s simply so much worse than anyone can imagine?

That tribunal was a nightmare. One that just would never seem to end. It has now… but it still haunts me, days later. I felt… molested. They tore into every part of me without emotion, care, or regard for my wellbeing. I felt presented to them so they could eye me, judge me, penetrate my very soul.

It was just horrible. Intolerable. It felt they tore inside my soul and ripped out everything inside. Everything I never wanted to think about again. Everything I had spent a long time trying to forget. Everything that I couldn’t think of again if I wanted to continue to survive.

They wanted to know things I didn’t want to remember, to think about, analyse… I’d already done that so many times in the past 20 months since this started, I did not want to do it again. I had no therapist to get through it, I had no therapist to return to. I had no one to help me the first time around, and no one there to help me deal with the memories. I felt like I had finally got to a place where I could forget the details and accept where I was (for now, until I get better). Now, they wanted to rip those scars open and have me bleed over their pristine giant table.

They dredged the dark waters and poured out all monsters back into my soul. Coldheartedly. Devoid of emotion. Without wanting my own to insult theirs.

They looked into every weakness, every symptom, every difficulty, every secret, every memory of every moment of pain. I was laid bare in every way in front of them. I felt I had been completely ripped apart and they were judging the pieces they had taken, like butchers looking at what quality meat they had ripped from a carcass. Except I wasn’t dead… but right then, I wished I was.

I tried not to cry. I couldn’t look up, or look at them. The tears kept wanting to come. I was tired. Frightened. Speaking and thinking of upsetting things. All I could feel was their eyes on me, their disapproval of such a thing. I tried not to cry. I think I managed it. But I think now I wish I had, then I probably wouldn’t have had a horrible meltdown later.

 

Humiliating. Traumatising. Demeaning.

Having to think about every little detail whilst your fuzzy mind stumbles through memories better forgotten.

Having to think about every little detail that has traumatised your mind for 18 months. Every detail that you have tried hard to forget, so that horror no longer scars your life, your emotions or your mind.

I had a meltdown. It wasn’t until later in the day, until I was home. I just wasn’t able to deal with it all anymore – it all just kept going round and round in my mind.

Because of the meds? Because of my memory problems? Because I was beyond exhausted? Because I was so beyond anxious even before the day even came and now it was over the hill and past the horizon of awful? Because of the memories it dredged up with the minutiae of details? Because of my “condition”? (I still can’t really say the “A” word….)

My guess? All of them. And more.

 

It was like being somewhere that combines the head teacher’s office and Simon Cowell’s X-Factor panel. Only far more traumatising, humiliating, demeaning, and terrifying. I’ve done the Simon Cowell thing, I’ve done all the audition-panel things. I’ve sung solo in front of 1200 and alongside others in front of over 1500. This was nothing like that.

There was a room. It was so white it was horrible, so bright with sharp fluorescent lights it made me feel sick. It was a large room with a large table in the centre. On the other side were three quite old, stern-looking women. One was a judge, one was a doctor, and one was some kind of disability specialist. They were frightening in their imposing energy… I just felt myself wilt in fear in front of them. I kept my head down. I tried to speak to them, but… there are no words. I just couldn’t do it.

I had my friend but no advocate. No one to truly help me. I was alone.

Understanding Pain

They kept on asking me different questions, bouncing around with them, so I couldn’t keep my thoughts straight. I would try and answer, then forget the question, just think what I was thinking about and move off on a tangent. They kept asking me about distances I could walk over a year ago – how should I know? When you can’t even remember the last question posed before that, how is it possible to remember something from so long ago? They asked how far, distances in years, or miles, or meters, or even length of houses… I could never work out distances and now I don’t even have spacial awareness to the point that I couldn’t reference the length of 20 houses, or 100. I don’t even remember where places are anymore, and I always have to ask my friend which way we’re going and how to anywhere, because I no longer remember.

 

Inane question after inane question on historical facts kept coming. I couldn’t understand why now wasn’t relevant, and the judge mentioned that they could only take facts up to January 2015 because of the date of the last assessment. I was already in this state by then, so it was hardly any different to now, but it also meant trying to think back to a year ago and more. They wanted specifics… and I could only talk in disjointed vague memories better left forgotten. I honestly had no idea what I was saying or talking about.

The doctor even asked me that age-old gem that always really riles me up: “So, what do you think is wrong with you?” What I really thought was wrong with me was the NHS being an unhelpful butt-dragging arsehole. What I told her was that I didn’t know anything because no one cared to look, test, check… I didn’t know what was wrong with me, because no one had told me. I hate it when doctors do that – it’s their job to tell you what’s wrong. That’s why they’re there. To do that. I didn’t go to medical school, or work in clinics, or get an MD behind my name. Are they being lazy, or just intolerably insulting by expecting that everyone is aDr Google hypochondriac that thinks everything awful is wrong with them? I know it would be entirely unthinkable if I went around asking a simple database user what they thought was wrong with the system backend when they couldn’t do something on it… they’d look at me silly. What would they know about the coding, the access logs, the system details? No, I wouldn’t ask. I would just go and find out from the “symptoms” given as to what was wrong with the database. Damn doctors should do the same, too.

 

I tried my best to answer all their questions, but I’m certain my answers were as confused and chaotic as my mind felt. The light was almost suffocating and drowning me, these women were firing questions at me, expecting answers I didn’t know how to give them.

BagPuss_BeanieToy

Bagpuss

I clung to the little BagPuss beanie toy in my hand. My mother had given it to me a long time back, because it was my favourite show as a child. It comforted me, helped me. I squeezed him so tight, I’m surprised I didn’t somehow break it. It was a tiny plushie thing that was small enough to fit in my hand, and I hid it in my bag. I didn’t want them to see yet one more weakness.

I was already in such astronomical pain – I could barely keep myself together, let alone my mind. The anxiety, the painful and nauseating cab ride over, the physical exertion and extreme pain endured when I tried to use their bathroom, behind a horrible heavy, large door… it all added up to my state of mind before I even walking into that awful white room of bright lights and people.

I had no idea what to expect. I was confused and in pain. No one sat with me and explained what was going to happen or what was expected of me. I just went into that big white room and was faced with all this. It was unfair. If I was there to give myself a chance to explain myself, they set me up to fail. They may have “wheelchair access” but they were not by any means disability-friendly. They weren’t caring towards people with neurological or mental health conditions that would leave them scared and confused.

Maybe they just expect and assume that “someone else” will take care of these people… but who are they? I certainly couldn’t find anyone to help me go there who knew what they were doing. I have no therapist or social worker, care or case worker, or any other professional. Charities have limited people and too many applicants for such assistance because the NHS or care teams don’t provide them. I had no one. And that wasn’t really fair. It was also too late before I thought of the NAS, and that perhaps could help with finding an advocate… waiting lists are always far too long. If a similar thing is presented again, I will call, though.

 

I have been through it, yet (ironically?) I still have no idea what was actually expected of me. I told the truth, and that’s all anyone can do – but the confusion, inability to focus, incoherence, fear… it all goes towards how you communicate with them. I told them I couldn’t really communicate well with them. They were aware of it. What I don’t know if they take it into consideration when they think about the case. About my story. The story I can’t tell unless they read my writing, which they have not. Will not. Weren’t going to.

Weather The StormI don’t know what the outcome will be. I don’t know how long it’s going to take. I don’t even know if they understood me, believed me, got it right. My friend tried to help, but they didn’t really give her much of an opportunity to. They refused to let her help me speak. They forced me to do it on my own, and I know I got it wrong. My friend really tried to mop up a few of the mistakes I made that came across incorrectly, but there was only so much she could remember, since they asked me questions for some time.

I was confused and perturbed by the manner they spoke to me and the way they organised themselves, their questions, the procedure they used, by the fact they made me speak for myself without my friend helping me. They did nothing to help me make my case… in fact they made certain it was more difficult.

Now it’s been a few days since, I’m more angry with them for doing what they did, what they put me through, how truly badly they made me feel – penetrated, probed, torn up… a victim. They should have been there for the truth… their methods undoubtedly made me unable to tell it. To tell them much of anything that was of any use. If they had been calmer instead of stern, explained the entire process at all, helped me understand and be calm, didn’t make me feel rushed, had read my writing instead of ignoring it, asking me to read it when I was too scared to… Instead, I babbled, confused and frightened under the bright light in the big white room that was imposing and giving me a migraine and a panic attack, unable to really say not even half of what I wanted to or should have.

They had no idea how to get the truth out of me. They didn’t get lies, but they must have had unnecessary information instead of what they wanted from me. They quite possibly wasted my time and theirs because it didn’t go the way it should have. A little more care and attention into taking individuality into account, and their work would probably be much easier. A shame they don’t understand such things, and you’re nothing but a ticket or docket number to them.

 

I’m left daunted by it, and a little haunted. I don’t think either answer will really dilute the experience enough to forget it. It’s left its mark, and it shouldn’t be like that. The system should support everyone who truly needs it and squeeze out those who don’t. Right now, it’s the other way around. Those who are not ill and clear-headed and manipulative are able to con and convince the assessors and panel into believing them. Others, like me, can find it difficult to communicate properly for various reasons (not to mention that pain and exhaustion from illness doesn’t help in and of themselves) and not do a very good job of making our case.

Whatever the result, I did do my best. Unfortunately, it may not have been enough. But I did my best.

 


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