Tag Archives: meltdown

My ASD: Mistakes. Are. Bad… Very. Bad.

I’m not even sure why they even exist… but these physiotherapists are just such a waste of time. She screwed up again – and I pretty much had a meltdown about it, also causing a big set of severe Fibro spasm attacks. Hoorah

After going to so much trouble to get the right date this week so my mother was here with me, the damn physio wrote in the wrong date anyway into the diary when she got back, and after waiting and waiting and waiting, I only find this out after I call when she’s an hour late. So that’s two ruined days because of her, which has just sent an already troubling and difficult week into a horrible tailspin.

It is clear that no matter what acts or policies that are in place, nobody cares about how they treat you when you have ASD. It’s OK for them – they’re not the ones who have to deal with the meltdown (or at least severe anxiety attack) that is the result of this god-awful thoughtlessness. After trying to deal with it all afternoon, I had an anxiety attack and mini-meltdown later on in the evening, after that panic built and built and built. It in turn ended up in a series of severe spasm attacks that were horrific and painful. But she didn’t have to care about that, did she? No. She could be ignorant of it, never know about it, never need to care about it. It doesn’t affect her. So why should she care, right?

Apparently, that’s how they all think. It’s certainly how they all behave… And it’s just horrible. To the point of being traumatising.

20160920_173759000_iOSWhen appointments are made, stick to them. Don’t be late. Call if you’re going to be late. Isn’t that “NT” politeness anyway? Well, it’s vital in my world. I’ve already had PIP mess me around. I’ve already been thrown into hell with the isobars down at 1000mb level, unable to even breathe sometimes it’s so painful. I’ve already had a hell of a morning, starting with 3-4 hours of going through the motions of trying to get up – yes, that’s how hard it is. And I’ve had to get up super-early so there’s enough time to do all this and regain an equilibrium before the appointment…

And then after all of my efforts I find the physio didn’t even try to get this right. After we brought out the calander and showed her all the dates my mother was available. She still couldn’t get it right. The emotional turmoil of this, of all my efforts for nothing, that the fact she could make such a mistake that cost me so much… It’s just too much to bare.

There’s also the other point that I cannot even begin to cope with changes… as well as the horrifying realisation that she probably didn’t get the message I left with their reception to cancel the appointment she wrote up, and that she might come tomorrow anyway. When she wasn’t supposed to. When I told her not to… And then I have to cope with that thought, with that change, with that intrusion, because she wasn’t supposed to come tomorrow… It’s horrifying to think that she thinks it’s OK to put me though such a thing, just because she can’t concentrate long enough to put the correct date down. It seems so unfair. It’s not like they don’t know I have ASD… They just don’t care, or have a clue about it. Or care to have a clue about it.

Proving legislation and policy  is a complete and utter waste of time.

Tomorrow, either I’m going to be home alone when she comes, or my father remains here with me instead of attending his weekly visit to see his elderly mother. I don’t understand emotion generally, but I know that uncomfortable feeling of guilt. And that last option makes me feel a lot of that. The former terrifies the bejeezus out of me – I have no intention of being there alone with her. I’ll either say nothing, or say precisely what’s on my mind… which I’ve learnt that NTs do not want to hear. Apparently they’re allergic to the truth. The polite fluff they engage in is still beyond me, even though I generally attempt to emulate it. Probably quite badly, but hey… at least I try. Which is more that can be said for the other way – not many NTs [professionals] try to understand ASD-Land at all.

Like the physiotherapist. And PIP.

GrumpyBearI am “ranting”, but it’s so very horrible. “NT” people never seem to understand this – although some at least accept it. I’m terrified of tomorrow (and that’s actually an understatement), and the fact the isobars are still on the floor are not helping. It’s going to be a long morning, at the end of which, I have to call the receptionist back tomorrow to verify the appointment has been cancelled and the physio is not coming. She was supposed to call about it (the physio, that is) and reschedule, and she never did. With that evidence I can only conclude she thinks she’s still coming here. It seems that if she has a mobile phone, neither her receptionist nor myself have the details of it to contact her directly when she’s out.

I knew they were a waste of time, but since the initial attempt at contact was a farce. It’s not ending, either. It still is. I can’t see any reason to continue with this – it’s one extra burden I can do without, given there’s no payoff from it. I’m already ahead of her game, and so far she can offer nothing better. So I’m wondering why I’m spending the effort of enduring hours of pain and torment to get up in time for her to come, when she’s not actually even coming in the end, because she couldn’t do one simple thing right – write an appointment in her diary on the correct day. And repeating it all again in case she turns up tomorrow. It’s harrowing.

I really am honestly scared of facing tomorrow. I hope I get some sleep… It’s “only” 1:49am as I write this now. And there’s a long night ahead…

 

A Question of Sanity

 

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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

 


Five Stages of Misery…

Five Stages of Grief In Chronic Illness…?

 

It seems logical to go through it when you have a chronic illness… Grief is loss. With long-term chronic illness, you lose a lot, if not all, of your former life. You are thrown into a new one… one you didn’t ask for. One that is difficult, painful, traumatising, miserable… one where everything you once knew is no longer there. It’s all gone. Maybe even people have gone.

One day you were living your normal life, then one day – poof – it’s all gone. Everything is turned on its head. Upside down. Your world has imploded. Nothing will ever be the same again. Maybe you’re not dead, but it’s the death of your life. Grieving is surely inevitable… no?

Perhaps you get there – to Acceptance – quicker if you know what it is? Why this is happening.

It is difficult to accept an illness that remains undiagnosed and you don’t have a name. There is nothing to accept. There’s no answer.

So, you never get to that last stage. Not until you have something to accept.

 

Kübler-Ross Model:

  1. Anger
  2. Denial
  3. Bargaining
  4. Depression
  5. Acceptance

 

I feel three out of the five, oftentimes all at once: Anger, Depression, and Denial. They’re strong things to go through. I’m also really sure that the Aspergers in my brain is clouding everything more than normal. I have no idea what someone without it experiences – we’re all different – but being emotionally-incompetant cannot help one jot.

Let GoFibromyalgia, and other chronic pain, tends to come with a lot of emotional side effects, and the neuropathic pills adds to that. “Fibro Fog” turns up in patients with Fibromyalgia, then one of the more common symptoms of Pregabalin, at least, is various kinds of memory impairments.

I imagine the “Fibro Fog” turns up because dealing with so much pain is too much for the brain and mind to cope with, so it shuts down. It’s a fuse box with a switch that gets flicked – you can’t turn off one thing on its own; the brain has an “all or nothing” psychological reaction to such things as trauma… and that much pain is trauma. So it shuts down everything in the head, and “Fibo Fog” turns up, leaving the mind incapable of functioning.

Add Aspergers to that – where, basically, the mind is all you have to manage life and the world – and you have a volcano of confusion and frustration to contend with. I deal with things through my mind; I have no proper emotion, and what I do have doesn’t make sense and scares me. Makes me act out. Turns me into a terrified six-year-old child again. With every meltdown, the world stops, my brain disintegrates, and everything falls apart into a horrific nightmare that I can’t seem to wake up from… at least on my own.

 

Moving On?

My EQ is through the floor and somewhere past the centre of the earth. I don’t know how to cope with it – those three things. I don’t know if that is what I really feel either. I know I’m scared. Terrified. I now grieve for the things that have gone – I deeply miss everything that I’ve lost. ASD doesn’t allow much room for being able to deal with changes in any way. Taking everything away from someone like that is never going to end well… Usually in meltdowns. Which is what happened. Is happening. What keeps happening.

Tests In LifeIt’s been a year and a half, and I still can’t adjust to it. I have no answers. No help. I’ve received no therapy. The only medical intervention has been an MRI scan focused only on one small section of my spine. No other diagnostics has been carried out, unless you count some blood tests about a year and a half ago to try and rule out rheumatism.

It’s no wonder I’m stuck circling three of the Five Stages.

Answers are important. Knowing what’s wrong is important. It might not stop anyone going through the stages, but it probably helps you go through them faster. Acceptance is important to reach. I want to get there… but I have no idea how, especially since I have no clue as to what I am accepting.

What is it that’s making me this way? Can it be treated? Can it be cured? Is it long-term manageable? Will I always be unable to walk and need a wheelchair – or will I get better? Or at least be able to walk a little, even with a cane – maybe with the dog again? Can I do anything to make it better? Am I doing something wrong, that’s making it worse?  Something is making it worse… Unless it’s just progressing to whatever horrible conclusion it’s going to…

Just… what is it? What is making me like this? I need answers… I need to accept this.

 

Circles In My Mind…

So I keep circling. I have nowhere else to go. I’m not doing the Bargaining thing… it’s very pointless to try and compromise with an omnipotent being. So I’m stuck with the other three. One at a time, two maybe, and too often all of them all at once.

I can’t make sense of it. It’s all a jumble, everything all mixed up. Circling and spinning and jumbling. Kinda the reason why I asked for therapy over a year ago… but nothing turned up. After a year and a half, there’s nothing. I have no answers; I have no closure. Not even a real diagnosis. Not even my GP accepts the “Fibromyalgia” right now, because it’s a “diagnosis of elimination” and, frankly, nothing has been eliminated except a slipped disc. Sort of. Not even MRIs catch those sometimes. As a diagnosis of elimination goes, that kinda sucks. The Pain Clinic’s attempt at “eliminating everything” kinda stopped at one MRI and poking me once in the spine nine months before I saw them again. Somehow, I don’t think that completely qualifies.

I’m lucky; I have a GP that wants real answers and cares that I get better. Or at least have answers. He’s a good doctor.  I don’t expect to have a different diagnosis, but I want to know it’s definitely that. Not anything else. That everything else really has been eliminated. I suppose no one wants to have the wrong diagnosis, to have the wrong treatment – or worse,  no treatment.

I already went through that once with the depression/Asperger thing. I’m not willing to accept the first thing someone says.

 But until I do get something that is as concrete as possible, I really don’t know how I’m going to get to Acceptance anytime soon, or before… But somehow, I really want to try.