Tag Archives: lost

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

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

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

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

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

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“You Don’t Know What Damage You’ve Done…”

There Should Be No Shame…

But… There. Is. 

So. Much. Shame.

I can’t work. I can’t breathe. I cannot seem to stop it running around in my headDepression, Panic, Hopelessness, Despair… All claiming me. Claiming my attention. I cannot relax. I can’t even take a deep breath — both literally and figuratively.

This idea has burned up my brainShaking, Shaken, Shame, Horror, Sickened Disappointment, all running rampant, until now I can barely move, I’m so frightened.

I read today on Twitter one single Tweet that stuck in my mind, saying:

 
If you’re living with this illness and functioning at all it’s something to be proud of, not ashamed of.
 

Carrie Fisher

This is what she has taken away from me. That physiotherapist.

Every Hacker, even every kind of Fighter, knows it takes one tiny flaw, one minuscule hole or weakness in the armour, and you can wriggle in and destroy what you’re going after. My armour was nowhere near strong enough to take this. It was new, vulnerable, still setting in its place. I am not sure if I ever even had a glimmer of a chance to survive such an onslaught of horrific demons and emotions from that one simple curse laid upon me.

My mind feels… Dead. Hopeless.

I’ve been trying to play Skyrim. No avail. Between my head’s cacophony of daemons, and the dogs’ constant barking (which dad ignores until I yell at him over text to fix), I’m in Emotional Hell. With Alexithymia and ASD. Meaning, I got no way in all hell’s universes of getting through this or managing this alone.

The constant barking screams it all home — if I was OK, if I wasn’t trapped here, if my legs workedthey wouldn’t be barking. I’d be there, telling them what to do until they figured out it wasn’t in their best interests not to make a peep. Dogs hate lectures. A lot. They love huggles and praises. So, it works like a charm to lecture their ears off, and they really think hard before doing it again. (Go on try it…!)

QueueHatred, Resentment, and Breaking Inside Till I Shatter & Die. Because I am not a good Mother. I am not a Good “Dog Owner” (hate the term). I am letting my babies down by not being there enough for them. All of this right now, once again, just Feels Wrong.

Not “OK”, like it did before. Like I fought so hard to feel. No. The horror inside I endured for nearly 5 years is back again, and doesn’t seem to anything but cruelly relentless and suffocatingly strong.

 
Utter Shame. Overwhelming Resentment. Clawing & Churning Despair Inside. Extreme Self-Hatred. Suffocating Feelings of Pointless & Being Troublesome. Disturbing Thoughts of Death.
 

I got them all to go away. I chased them out… But they apparently only got as far as a holding pen outside of my consciousness. And a fickle one at that. Now Queue Dragon of Disappointment to come and join in, and sit on my head again. All having a party in my brain, destroying it like it is a hotel room and it’s the band’s last night.

I’m trapped inside it, being tormented by it all. Imprisoned in my head, as well as everywhere else.

I’ve done this. I’ve done this before, and I’ve gotten away. I’ve done this before… so, so many times

… So, why do I have to go it again…?

#depression #quote #drowningfeels #suffocatingfeels #trauma #ptsd #imprisonedfeels #fibroplegia #lost #fibromyalgia #dragondisappointment #despairing

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Alone Without Precedent

The more I am in this situation, the more it eludes and confounds me. It doesn’t help that it thus far has no definitive name. What really doesn’t help is the psychological aspect.

I checked around the Internet… There seems to be really little on ASD/ Autism/ Asperger Syndrome with neurological or physical chronic illnesses. There seems to be no precedent, nothing out there from other people  who are or have been in a similar situation. There’s one or the other – but not both together.

I feel I am wondering out in the wilderness with no way of knowing which way to go, or where I am even going. There is so little help… Nothing but Waiting Lists, and then some. Lots and lots of them – Neurology, Occupational Therapy, Psychological Services… and then there’s more to come for diagnostics, physiotherapy, treatment, more appointments… A never-ending carousel of waiting. With no one to help in the meantime. Without a clue as to what might be wrong with you or why you’re suddenly like… this.

All I know is that it’s no longer Fibromyalgia. Last time I checked that required pain. Mine is all gone, replaced by horrible other things instead. No longer hyper-sensitive to cold, no longer in that pain I was in, no longer able to feel… well, almost anything. I’ve never hit my “funny bone” before and barely noticed. The dog can walk or bounce on me, chew [gently] on my arm and play with it. I don’t notice bumping into things, or people accidentally knocking into me, or things falling on me, or even touching my own arm or leg. I’ve been told there’s a terrible rash on my back and neck as a response to using oils – and I would be none the wiser if they hadn’t told me. I can’t feel it and it doesn’t even bother me. But when I touch it, it feels pretty rotten, I must admit…

img_0886Today my fingers went really numb… like someone had tied super-tight string at the bottom of each one; that feeling of the blood flow being cut off – and yet there was nothing on my hands at all. Not even gloves. I have also had a very hard time with extreme Fatigue (and I do presume I have a cold, to be honest), argued with gathering a Shard on Dragon Age: Inquisition, and my back and legs (especially my legs) have been quite “buzzing” and/or tingling (varying through the day). This morning I couldn’t even move or feel my own self to even try.

Right now I have to manage on the – rather genius and amazing – essential oil recipes for neuropathy and then for fatigue/brain focus, Devil’s Claw, Magnesium Oil (amazing), Neurozan vitamins, and coffee. Occasionally there’s minimal Co-Codramol (8mg/500mg) – almost always when I have a cold or infection – and Boots Botanics Ylang Ylang & Manderin “Aromatic Rollerball”. That’s on top of maxed-out Pregabalin pills. But without a definitive diagnosis, we’re all just pissing in the wind, guessing and hoping for the best.

I feel alone. Lonely. Because it really does seem I’m all by myself with this. Yes, peopleimg_9891 have neuropathic chronic illnesses, and yes, people have ASD. I am yet to find someone else out there who has experienced this and at least attempted to navigate this.

With the NHS in turmoil, and Social Care drastically underfunded, I’ve pretty much relegated myself to the Raggydoll pile. I just now wish to be the best I can be, especially psychologically. It’s a big ask, but it’s all I can focus on – and the only thing I can control now. There is just nothing left in my life I have any control over, and I have no idea. I am in the middle of it and I don’t understand any of this – so it’s hardly like you can expect anyone else to… But I do wish that at least I did. And this new numbness twist? That just hurts my head.

I am just lost, and I do not like that at all.


Keep Sane… Keep Going…

I would have expected that after more than two and a half years I might be used to this by now… the pain, the exhaustion, the enormously excessive fatigue, the lack of mobility, lack of focus, lack of concentration, lack of my usual ability to fixate obsessively… but I am not.

I find that I feel quite lost without those things – particularly the lack of focus and obsessiveness, inability to mange to do the thing I love. It seems unreal that after all this time I still suffer like this with it. Other people with Fibro don’t seem to go through quite the same thing… I am quite despondent from it – I wonder what I am doing wrong if other people can manage their Fibro condition, but I cannot.

Is it as simple because I have complications in my symptoms from the AS? I have sensory hypersensitivity as it is, so that must exacerbate it. Is there something else? Do they get a better NHS service? Are they overseen by a pain clinic that helps them? Is it because they can take medication that I can’t? Is it because I suffer is quite strong and unfortunate side-effects from the Pregabalin? I do not know. I have no specialist; I never have. Not in London, not in Wales. There is no one to ask. No one to help – the NHS, the GP services… everything is all in turmoil, and as always, I am left to my own devices. Nothing has changed there in 25 years.

The thoughts, these troubles, run rampant inside me constantly. The questions spin ceaselessly through my head and burn my mind… what’s left of it. Right now I am so exhausted I am in another world, zombified, zoned out as if I’ve been given some massive tranquilliser doses. I can barely focus on what I write, and must re-read what I am saying and attempt to write quickly what is on my mind before it genuinely forgets it all. I am at a loss to know how to help myself – I push myself, I rest, I attempt things that require concentration… and if I remember what I’m doing and realise that I can’t, that’s when the tears of frustration start burning in my chest and anxiety rises all the more. The worst part is nothing seems to work, and I am a slave to the weather. Meaning so far within the last eight months I have managed to do very little of what I hoped that I would. Particularly this summer.

Some days have been nice, some days awful, and some days so bad you can’t even see out the window for all the fog and rain… Yes, just like my life.

Once again, the rain comes tearing down, hammering off the roof and windows. Wimbledon is playing its one single game under the now-domed Centre Court. And people are lucky if they don’t require a boat to get around. The pain, the aches, the stiffness, the immense pain and unimaginable fatigue, all makes even a simple existence difficult. I would be quite happy watching the tennis with one eye and reading one of my copious amounts of (Kindle) books with the other – there’s quite a virual mountain of them still going unread, because I cannot read now. Not that I don’t know words (obviously), but because I do not remember what I have read, nor retain any information about it, not five minutes later.

I am used to retaining most things. I am used to my brain working in multi-core processing at hyper-speed. I am used to being able to do things. I am still not used to not being able to  do almost anything. I have all the time in the world on my hands… and my mind, my brain, my lifeblood, seems to have been taken away from me. Thus I cannot seem to utilise that time in the manner I would prefer. I would be able to get so much done – read books and magazines, install and become accustomed to using Linux, coding, and networking, get better at chess and Hearthstone, listen to audiobooks.

On the other side, I have ended up mindlessly watching TV catching up on virtual online streaming “box sets”…

Perhaps the most obvious thing to suggest here is to just “rest and sleep”. “Resting” makes me mentally hyperactive and frustrated to the point of meltdown (on occasion). Sleep… well I can’t sleep. Never have been able to. Now it’s just worse. Throw in the nightmares and it becomes even less inviting… though these have become less frequent of late, thanks to finding the “Sensory Diet” and implementing it, resulting in less meltodowns too (going down from several a day, to no big ones for several weeks).

However, the lack of ability to allow my excessively hyperactive brain to “run”, to get rid of its energy, to approptiately use this free time to learn, to read, to practice I what I’ve learned… it all gets too much sometimes. Like today. Like most other days. My brain wants to take a massive run at a whole bunch of things… but the focus and energy required to do it is lacking. Missing. Gone. Sometimes there’s a flare of it, but it is short-lived. I am quickly exhausted within a short time, so I feel there is little point even starting when I cannot finish.

Sedentary life is not for me – not the mental sedentary life anyway. I’m not generally worried so much on the physical (a little yoga and dance has made me quite happy there). But without the ability to mentally “go nuts”, I am frustrated, irritated, easily annoyed, fidgety, broody, shut down. The pain of movement, of thought, of even sitting and sitting and typing, of trying to organise anything, is awful to the point of excrutiating. To the point where I feel it’s just not worth the pain. The pain sears by brain, short-circuits it, burns it. I wish I knew how to stop it.

 I wish I knew how to be calm. Remember how to be… me.

I miss being me.

 

 


Wonderland

Annie sang about “Tomorrow”. Everyone talks about “Tomorrow”. Everybody waits for “Tomorrow”. It’s “only a day away”… Right?

But what if tomorrow never comes? And if you think is has, it’s probably just an illusion. One that shatters really easily as soon as you let your guard down. When you’re vulnerable to attack.

I thought “Tomorrow” had finally come. I had what I had always wanted, and thought I had found some peace. I thought I was now far away from the Lewis Carroll-esque madness of Wonderland.

But… no. I was not.

I was a moment from being pulled back down that rabbit hole again… and here I am. Again. Living in that same fire-and-brimstone, crazy, bizarre, seriously-gone-wrong hallucination even Tim Burton couldn’t imagine. The one that is oh-so-familiar, because I’ve been here  before. In fact I lived here for many years. Way over a decade. And now I’m back. Hello “Wonderland”. My “Tomorrow”… and every other day after that.

I am hurt (falling down fictitious, imaginary rabbit-holes to a form of tripping hell apparently hurts…), I am confused (who wouldn’t be…?), I am scared (same again), and there is apparently no way out (…great). After two and a half years of living in it, after being away, free to live my own life in “normal-ville”, my “old home” is now more of a stranger to me than perhaps it was when it was new.

Have you ever left home, gone away for many years, then come back and not really known what to do with it anymore? They’ve changed some of the roadways. There’s some new areas, new buildings, new and expanded sectors of real-estate – where there were once fields, there are now homes with families long living in them, new shops where familiar ones were, or you just don’t remember your way around anymore. It’s a place with a huge culture difference, even a language or accent/dialect difference.

As you can guess, I’m going to say returning to “Wonderland” is very much like that.

 

Wonderland

And what exactly is “Wonderland”? It’s a dark place where your worst nightmares come true, where unbearable pain is constant and consistently agonising (whether physical, emotional, or both), where the incredible and unbelievable (in a bad way) happen, where there are catastrophic events exploding over and over again, where if there can be a set of events that can ensure the worse that happen, it absolutely will. It is a dark and abstract place that doesn’t feel like your life, and yet – somehow – it is.

The only way to survive living here is to keep your hope close and your cynicism and wariness closer. Where you expect the worst, and maybe hope for the best… or at least something that isn’t the worst. And sometimes it’s where you’ve got to simply expect something literally unimaginable: This is the place where “imagining the worst” doesn’t even come close to what actually  ends up happening. You cannot relax for a moment – letting your guard down is a chink in the armour. Then it will get you and take you down into deeper darkness again.

To (hopefully) many, this sounds over-dramaticCatastrophic. Probably even bizarre. But it really isn’t when you’re living it. There’s a strange life some of us have to lead where pretty much nothing goes right. Ever. I call it Wonderland – because it’s as cold, dark and trippingly-bizarre as the place in the books. It’s a place of nightmares where nothing seems real, and that it really all just a dream you are going to wake up from. Any time now. No, really. You will…

It’s the place where you live those real nightmare every day, and you can never wake up because you’re already awake. Where everything has been taken away from you, leaving you with nothing. Just a crumpled ruin on the floor left in pain and still being kicked. Where the moment you think you’ve managed to run away and escape it, it sucks you back in.

 

My Wonderland

The first time round, I was a child with (as I now know) undiagnosed Asperger Syndrome, severely bullied at school, living with a family going through its own excessive, and quite frankly cruel, trauma and turmoil. It was a long, complex, agonising, confusing and heartbreaking 15 years of my life, which was added to the first 11 years before of simply being “difficult”. What happened after that age was simply impossible and (not an over-dramatisation in the least) incredibly traumatic. Even to point of being treated for PTSD by the time I was 18.

I was labelled “Depressed” and everything was left at that. As if it was the magic word and it was the beginning and the end of everything. It didn’t come close to even touching on what was actually wrong, and I wouldn’t know for another 21 years what was actually going on. In fact, this “diagnosis” only compounded the situation and only made everything so much worse. It included drugs and therapy that was highly inappropriate, no support for what was really the problem, and ongoing despair because nothing seemed to work to “fix” it. No matter what I did, I never seemed to get any better. It wasn’t until I discarded everything that I presumed that I should do and did what I wanted to do that I started to get somewhere helpful, and to a place where I felt a lot more comfortable with myself, even if it wasn’t exactly perfect or completely “fixed”. It was still so much better than it had been  before.

Coming out of that just before turning 30, I thought I was going to be “home free”. I was climbing out of Wonderland. I was living better, with a exciting and interesting new career I was damn good at, that I worked by backside off for, and with a sort-of new family of my very own. Even a new dog. It was too good to be true. I even wrote about how great things where going in my (handwritten) diary. It was my last entry of that year. And it was too good to be true.

Because then Wonderland called again.

And when the darkness calls, when it beckons, and you don’t comply… Well… It comes and finds you to drag you back in again, even if you are kicking and screaming.

It was October 31 2013. Halloween, of all days. Samhain (pronounced ‘sow’inn’) is Pagan New Year. And what a New Year’s present it was that I received. Early in the morning I was walking the dog with my roommate and best friend in the park. This is the day where he was subjected to an ongoing ferocious attack by another dog, actually instigated by an well-known and unstable dog-walker/owner (no-one knows which) – I actually heard her call the dog to attack mine and I was horrified.

My friend and I were left to the two dogs fighting, whilst the other person literally ran away. It took maybe 15 long minutes of ferocious dog-fighting to get the two of them apart – and my friend took away the other dog (who once was taken away was back to normal, since it he was only doing it on command). I was left with Soul (our dog), with him injured and me being able to no longer breathe. The ambulance was called because we both presumed it was an asthma attack (horrible, but run-of-the-mill, as things go). But they got this strange look on their faces and told me it was not asthma and that I urgently needed to see my GP – who saw me right away after I explained what had happened and what they had said.

I was stunned to find out it indeed was not asthma. Oh no. Life is just not that simple. It was sodding pneumonia. Right at the onset if it, which is why I hadn’t been massively affected, with symptoms that I had assumed was just down to asthma. This wouldn’t have been such a complicated matter if this wasn’t also the very same week that – on top of my dog being savagely attacked – my friend and I were moving apartments. To the other side of London. Due to this illness, I managed to wheedle a few days off work to move house and try to deal with the pneumonia whilst packing boxes and sending them across the city. I had the antibiotics, I had taken the dog to the vet (straight after seeing my GP), and had very ignorantly presumed it would all right itself out in the end.

When we arrived at the new place there was unpacking to do and an injured, freaked out dog to deal with, who also needed walking in an unfamiliar area and living in a new home. At the same time, I was also expected back at work after just a week because there was an “emergency” there, along with vital things to do that no one else was trained for. I walked the dog every morning before work and then made my way on the 3+ hours’ round-trip journey to work from my new place, which included getting a bus, then the tube, changing tube lines, then getting another bus. Each way. And squeezing in a 7 hour working day as well. So to say I got absolutely no rest from the minute I was diagnosed and onwards was an understatement. In fact, I had not done so much at once for several years… let alone whilst being unable to breathe properly with a temperature and constant, quite violent, coughing fits.

I had drastically underestimated the severity of my illness. It is almost needless to say that it just simply went downhill from there. I gave my body not one moment of true real rest or respite to recuperate from the illness… so it just got worse. Out of hand. My body basically started breaking down – instead of being allowed to get better, it simply deteriorated. It couldn’t get better, so it just got worse. Every day for two years it deteriorated, each day being worse than the next. The awful decisions I made began a terrible chain of events that sent me on a downwards spiralling tailspin I could never recover from… and that is something I will always have to live with for the rest of my life.

Consequently, I was dragged back into Wonderland. Only I couldn’t really be kicking and screaming because I could no longer actually particularly move. My life as I had known it was over. Now the nightmare really had begun. Wonderland beckoned once more, and I had no choice but to fall down that terrifying portal-esque rabbit-hole again.

 

A Life In Wonderland…

Fibromyalgia was my burden to bare for my choices. My choice to stay employed. My choice to return and help out at work. My choice to look after my new house. My choice to keep earning money to pay the new (much higher) rent, along with the bills. My choice to look after my dog. My choice was to support my friend by walking the dog on my own because my working hours weren’t set and hers were.

My choice was not to look after myself.

So Wonderland called.

Living here again has been heartbreaking and terrifying. One by one I lost everything I had as I descended into the rabbit-hole… my career, my mobility, my dignity and self-respect, my mind… then finally my best friend and my home.

I was effectively sent home to live with my parents again, like I was regressed to being a small child, because they were the only ones who could look after me. My father was only part-time employed (after retirement) and my mother a nurse, so she had the perfect background and skills to help me. I required almost round-the-clock care because I could no longer do most things for myself – much to my immense frustration and despair. I was 35 and was having to live like a toddler again… and one in complete and constant agony. It was – is – quite frankly, humiliating, heartbreaking, and soul-destroying.

But that is what Wonderland is. That’s what it’s all about. There’s no sunshine, bunnies and rainbows for you here… this place is about breaking you until you have no more to give, and yet still absolutely expected to be carrying on with the fight.

Giving someone with hyper-sensitivity to pain from Asperger Syndrome Fibromyalilga, of all things, is just cruel. It’s like locking two mean adversaries into a single, small room and locking the door. Without looking back and throwing away the key. You can guarantee they will not play well together whatsoever. The reaction is explosive and the destruction is absolute. They will not agree and they refuse to even agree to disagree. Ergo there is nothing but chaos and turmoil… both of which are also great arch-enemies of Aperger’s. There are no happy endings to be found here… nothing left but ruination and rubble from the war inside. Everything is destroyed, and there is simply nothing you can do to rebuild it no matter how hard you try.

So, I have no job. Not much mobility whatsoever (but I’m working on that). An existence that involves living every waking second in extreme pain (and that’s before trying to move).  I lost my home. I lost my best friend. I’m living with my parents. I am alone. I lost most my memories and half my mental capacity and focus from the pain and medication. It’s now difficult to remember and learn new things, to focus, to concentrate, to even cope with new things. I have suddenly found it so difficult to focus on reading for the first time in my entire life. The pain in my hands makes if difficult to type or play games. I can no longer sing, play piano, or think of music. It feels like I left everything behind back on the “surface”, before falling down the hole. It feels like I have nothing, and I have lost everything.

Well, there is, regardless, a flip-side… Wonderland takes away everything, but in that it also teaches you a lot of things.

When you are forced to live in the dark, you learn to see in the dark. You learn to adapt. You learn to prepare for the worst, and to expect those things you feared the most to become reality. You need to have the will to survive, or you die in there. Every day is a lesson learned, a new way to survive, to learn to live in Wonderland, in the nightmare you cannot believe can be real, despite actually living it every day… hoping every day you get to wake up from it… and never doing so. Where you wake up from nightmares into another one. Where the darkness and despair never really goes away.

Somewhere in this mess, I have learnt who – well, what – I really am… I discovered all those things I went through as a child, and even when I was all grown up, was down to my having Asperger Syndrome. At the very least it complicated matters that were already complicated, if it didn’t cause them directly. Discovering and confirming this fact that I otherwise never would have found without this… disaster… has brought at least something positive in with it, taught me a lot about myself, acting like a candle in the dark. One I can see a little with, so I don’t feel quite so… lost and alone.

However, this small candle gives cold comfort in a world where nightmares and worst-case-scenarios are not just real but actually “normal”… It’s literally where my greatest fears and waking nightmares have happened, where those worst-case-scenarios I had imagined were candy-floss and kitten-fluff in comparison to what really happened. I can’t walk. I can’t really move much. Some days I can hardly breathe, all from the pain. I have nothing left of the life I once had, and I’ve been ripped apart from almost everything I used to hold dear. A small candle cannot extinguish that kind of pitch-black that fills the air around the world I am now forced to inhabit once more.

This life hardens you. Even when you’re weak, you are not. You never give up because you can’t. If you do, then it will take you down to its greatest depths of obsoleteness and despair… which by then most people can never fight their way out of. So you keep fighting before you get there. Some of us were born to struggle. To fight. To slay demons. To be warriors in the dark, fighting frightening, strong, and terrifying shadows whilst being broken by utter and complete heartbreak. It wants to see how much you’ve got, what you have to give, how far it can push you, how far it must to go break you. Then when you are broken beyond repair, it sees whether you can still drag yourself up and fight on. Regardless of the pain you are in. Regardless of the burdens you bare, and of the pain inside.

Victim or Victor… it wants to see what you decide.

 

 

Final_Diary_Entry_26.08.13[image2].jpg

The final tipping point of even ground, and the threshold of demons: Too good to be true… And it was.

 A snapshot in time – Moments before it all went so wrong: The final diary entry before everything crashed and burned around me…

 

Nobody_Will_Hit_As_Hard_As_Life.png
 


And Then There Was Two…

It’s one thing to like having things done a certain way… it’s another when you’re almost completely reliant on someone else, or other people, to ensure that they still happen that way.

Having an illness that strips away your ability to physically do things yourself after being always (physically) independent is incredibly… awful. Being unable to dress yourself, get your own coffee, make food, shower, walk, move – at least without a lot of help and/or extreme pain – is heartbreaking, upsetting, frustrating. The pain sears my brain, and I’m left asking for help. I don’t like asking for help and I prefer to do as much of everything that I can myself. Left like this is a living nightmare… especially the part on being reliant on someone else other than myself for things. I’m a firm believer in if you want something done, do it yourself. Now I have no choice but to get someone else to do it instead.

Carry MeThe worst part of that is that I like things done in very certain ways – rules, preferences, ideals. I used to just be OK managing them myself, and therefore no one else really needed to care because I did them all myself. No one else needed to know, understand or care about it too much when I could do it myself. But that was then; this is now. Now I can’t do them. Other people have to. I’m always now reliant on another person, someone else, someone not me, doing them. It’s disheartening, disempowering, frustrating, annoying… awful.

Now they have to care, and I have to try to get them to understand that it’s important that things get done in the same way I did them, that I need to have things done “right”. The thing is, there’s also something else: when things don’t happen or get done in my specific way, in the same way, in the right way [for me], in the way I like them done, I react badly. It’s like my whole world crashes down on me. I become scared, confused, lost. Those routines are the building blocks of my existence. They keep me happy (or my version of happy), keep me grounded, keep me “OK”. (this is the bit where you don’t judge me…). I am not “a slave” to them; they are my way of making life work for me, to deal with my existence in this world – in your world… to make the “every day” stuff everyone else seems to be fine with make sense to me… otherwise I am lost and scared. I panic. My brain shuts down and it disintegrates. Then bad things happen.

But I am not crazy. Nor am I stupid, mad, demanding, manipulative, or anything else everyone has always called me in regards to this. It’s just me, and I can’t do anything about it. I’m scared… What do you do when you’re very, very scared? I didn’t say it was rational; it’s just real. My truth. My brain. My fear.

My panic. My Hell.

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It’s apparently because I have this thing called AspergerI wasn’t too happy to learn that. Ironically, even the thought of it stressed me out so much it made it worse. On the other hand, it was pretty clear when I read all about it that was what the “problem” was, though. My parents read about it and just went “… ohhhhhhh“. The lightbulb moment was clear with them. The general reaction apparently was: “Well, that explains a lot“… For me, though, it was just one more label to stick on the back of my collar, and I didn’t like that. I didn’t need a new label; I just wanted to be able to do my own thing again, my way. I had it, whether I had the label on my records or not. What I wanted was someone to give a label to whatever the hell was wrong with my body, then fix it. But that isn’t what I got. And it’s not fixed.

I have diagnosis, but it’s not the one I wanted. I’m still stuck with being unable to do most things on my own. Thing is, just like pretty much most other people with ASD, a big part of being “OK” is that everything is the same. Take that away and it feels like your world is falling apart. When I could do everything myself, it was not so much of an issue. But when I’m almost entirely reliant on someone else to do it, then I have a problem. Good intentions unfortunately don’t make it right if it’s done wrong… and even though to everyone else it’s the thought that counts, I’m afraid I can’t deal with it if it isn’t right. I honestly can’t help it, change it, or “fix” it. It’s just how it is. I know… I’ve tried everything I can imagine to make it go away, and it just won’t. This is just how my brain is. It’s not like everyone else’s. It simply doesn’t really work properly.

Love Autism

If only I could accept it…

After more than 30 years, someone has finally told me why my brain doesn’t work properly. However, this is a diagnosis that doesn’t make everything all better and go away. You don’t pop a pill or have some surgery and get all better. There is no “getting better”. In a sense, there’s nothing to fix… it’s just a thing that makes you different. We don’t all have brown eyes, we’re not all one gender, we don’t all like the same things, some people are puppy-people and others are not… We are all different. OK, mine might be a bit stranger, but it’s just mine. My brain reacts differently to things, and that’s all there is to it. I have Asperger that you don’t understand, but maybe you have a strong affinity towards Gansta Rap music and a penchant for pink that I’ll never understand. That doesn’t mean either one of us is wrong. (Although pink of any kinda really is…)

And if only I really saw it all that way… If only everyone saw it all that way. (Not the pink-thing, the other thing.)

At the end of the day, it’s just a name for what’s wrong. It doesn’t change the fact it’s there, or ease my suffering – and yes, I suffer. It’s not at all pleasant being left lost, scared, and confused because something wasn’t done “right”. It’s not my choice, I don’t like it, I don’t want it, but it’s there and I can’t change it. I can only control what goes on to ensure feeling that way doesn’t happen – or happens as little as possible. It’s not worth the consequence if it does.

What really needs to change is the pain. Having the chronic pain has taken away my ability to do what I need to do to be OK. I am lucky that about 90% of the time the people who help me go out of their way to ensure things are done “right” for me, out of kindness and understanding. The other 10% of the time unfortunately leads to extreme breakdowns, or “meltdowns”, as my brain is unable to somehow distinguish that despite it not being right it’s not something to panic about. The result is a terrifying mental breakdown and blackout created by an extreme panic attack that execrates into a “meltdown”. During it I am not really aware of what’s going on, I just want the panic to stop. It’s exhausting and traumatic, and I’m quite willing to do what it takes to ensure they don’t happen. Most kids get diagnosed young and spend their lives learning how to deal with what’s going. I grew up in the back-end of north Wales and the best my mother got for my strange behaviour was, “she’ll grow out of it”, followed by mixed psychiatric diagnoses. The one that stuck was Depression. So I got treatment for depression… and, strangely enough – who’d have thought – that didn’t work. Nothing worked. Now I know that doing the little things I’ve always done to keep my mind tranquil and “happy” is what is required, and I do them. When they’re done, I manage. When they’re not… well, things don’t go so well and I end up back in that hell I hate so much.

Pain Will Make SenseWhat this ridiculous amount of pain has done is taken away my ability to cope. I spent my whole life learning techniques on how to deal with things that fall out of these strict parameters I built for myself. The pain sears every cell in my brain and takes away my ability to think, my ability to remember how I’m supposed to manage things if they go wrong. The pain causes stress and suffering, flaring (for want of a better term) the other thing that I have, and rendering me in that state of lost confusion, terror and panic. I need to do things myself, in my own way, to manage – taking that ability away is a living nightmare.

The Pregabalin has brought some of the pain under a little control, but the other side is the side effects screw with my head anyway. I’m walking a tightrope I keep falling off. I’m walking it alone. I had (stupidly) assume I would have some kind of professional help, but I don’t. Certainly not on the pain-side. There, I’m left to my own devices, having had nine whole months to deal with all this until my next (second) pain clinic appointment, the pain continuously getting worse. As much as the Pregabalin masks, it doesn’t mask the fact it’s getting worse and I can do less and less.

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I apparently actually have two crappy conditions that contraindicate each other. Both are crappy and both are rubbing each other the wrong way. One just aggravates the other, and the meds just gets in there and makes everything even worse when it’s not actually doing its job and helping.

There should be help, but there isn’t. The NHS pain clinic here is overburdened, and ergo useless. To have almost an entire year between appointment one and appointment two is mind-boggling, especially when ordering an MRI right away, eight months before you’re even going to see the person about it… and by then it’s no longer relevant. In the meantime, I continue to get worse. Also, in an ironic twist, I now have that pain everywhere except in one of my fingers – which is now actually going almost completely numb. It’s the only place I can’t really feel pain… or much of anything, really. Actually, it just feels weird. That’s the last thing I expected to experience with all this.

 

Weather The Storm


Lost

Fragmented… Scattered… Chaotic…

 

Hell.

 

It feels like the hard drive in my head has had its entire system wiped by a virus. Another nervous breakdown, another existence of knowing nothing. It’s like everything that was before is gone. I have no inclination anymore of how to be, how to live, how to do the most basic things in life of existence. It was never easy before, but I stumbled along and did my best — but whatever I learned then seems to have gone. Wiped away by the virus embedded into my code. Code I have no idea how to re-write. I certainly have no idea how to restore it, or if that is even possible.

 

As always, I can do nothing right. No one wants to be around me and my “insanity”. They don’t understand that I just don’t understand. That I literally don’t understand anything. I’m smart, yet it’s like I can’t do anything that’s simple. Those same people then wonder why I keep to myself and write or play games. They blame me for not being interactive… But how can I? I don’t know how to. I don’t understand what people are saying or what they’re doing, what is expected of me, or how I’m supposed to respond — it’s like they’re speaking a foreign language, behaving in a foreign way and I don’t understand their strange custom Despite the fact I want to learn all about it, they don’t want to teach me. They resent the fact I don’t instinctively know. They just think that I should just know it, and that’s that. As if they would think it were that easy, if they were dumped in the middle of Japan and yelled at for not being completely fluent in the language and sociology of a radically different country.

 

Simplistically speaking, I feel like I’ve gone from having a badly designed and glitchy OS (think MS Windows Vista or 2000…) with lots and lots of basic patch-fixes that basically do the job just about, to having everything wiped from it altogether. A nervous breakdown, acting like a virus, has come in and simply imploded my brain, and essentially wiped everything from it. No backups, nothing. There’s nothing left except a very basic Safe Boot which barely functions. It wasn’t like I was doing all that well before — it was always difficult to manage to just be alive, to live, to pretend to be normal. I hardly managed all that well to begin with, but I struggled by… Just about. But now… Now I’m reduced to nothing. Nothing but tears and loneliness.

 

I have no outside help, and the tiny handful of people close to me are no longer interested. Just angry and resentful. Hateful. Nasty. Impatient. Cruel. As they have always been. I have always been the one on the outside — blamed, sent away, thrown at so-called professionals (the useless gits that they were) to try and “fix” me. Of course they didn’t. They just labelled me and gave me medication in the hope that I would go away. Only it’s 20-odd years later and here I still am — only worse. Still self-harming, suicidal, and amazed I’m still here. On willpower alone, because I sure as hell am not getting any professional help. I’m sure the waiting lists only exist to try and see how many survive long enough to get the help they require… To see how many throw themselves off bridges in desolate desperation to escape the horrific hell of their existence…

 

I say existence because this is not living. It is not living to be frightened of everything, to be confused and overwhelmed by the simplest things, to have a complete breakdown by the smallest things that completely terrify you. It is not living to have severe depression, crippling agoraphobia, constant terror, social phobia, awful chronic pain, people who are supposed to be your family being resentful and hateful to you, people who were supposed to be your friend vanishing because they don’t understand. It is a hell that was never supposed to be on earth. One I want to stop, and one I’m getting weaker and weaker to the power of making it stop. I’m not sure how long I will have the ability to say no to the lure of the amassed pills that I have to deal with my incessant pain. I don’t want to… but how long can someone live like this without hope?

 

I don’t want to be like this. I want to get back all that information I lost. Like having to re-code all that data again… Not that it was much good in the first place. It was a basic, ill-written and glitchy set of patch-fixes on a crappy system. It’s probably best I pretty much have to start from scratch, but no one wants to help. I need the correct data, and they won’t provide it. Instead, they get angry, frustrated, horrible, tell me they hate me and want rid of me — because they don’t understand. They always come back at me with: why don’t you know this already? I can’t deal with all your crazy shit — all your questions, I can’t answer them! Leave me alone before you make me go crazy too — sucking me into your mad world!… Well… Why is it OK for them to be left alone and not me? Why can’t I know what they know, and why won’t anyone explain? Why won’t they tell me and let me be like them? Why should I be left like this, when all I want to do is learn how to be like them and live in this heartless, cold, and confusing world?

 

I need relevant data to be able to process and analyse things — with the relevant data, I can start putting together whatever I need to “code” the correct responses to things. With the right help, I could do this. Using the right information, I would then be able to strategise what the best outcome would be for relevant situations, like I used to. No, this does not come naturally. That’s what I get asked. The answer is simply NO. I wish they would listen, accept, and understand. Throughout my entire life I have worked very hard to try and collate the relevant information to gauge the correct responses for given situations… It’s been a difficult and exhausting task, filled with immense fear and anxiety — especially since I rarely get the output right, because I’ve never really had the correct data. I have tried to emulate the best I could, but any gamer knows that an emulator is always a poor substitute for the real thing. It just doesn’t work as well, and is likely to fail and disappoint. Just like I always did.

 

The cold, hard fact is that I do not, and have never understood the world in any other way. Until I understand things intellectually, I essentially return an error code or a null result, which is not helpful, and it’s scary when you don’t know anything. Imagine waking from a coma with amnesia in a country you have never been in, and with everyone yelling at you for not knowing anything, for being stupid and pathetic and asking questions because you just don’t know — you don’t know where to go, how to get there, how to behave, who to talk to, how to speak to people, how to interact or deal with things, how to understand their answers or what they mean… If you close your eyes and really imagine that for a moment… Now you have a good idea how how freaked out, terrified, overwhelmed, and confused I feel. Except I feel that I’m not in the wrong country — more like I’m on the wrong planet. I don’t understand people, and they don’t understand me. And no one wants to help translate or navigate this strange world, either. So I’m on my own — and slowly, it’s killing me.

 

I am severely depressed, frightened, need help… but all I’m getting is the backlash from people  I thought cared about me, who just say I’m crazy and yell at me a lot. Resent me. Hate me. They want me to somehow magically understand everything on their terms, and give me nothing in return. What about my terms? How come I do not get any say in this? Why am I the one jumping through everyone else’s hoops? They don’t want to understand me or help me. In fact, they don’t want me to be me at all. They just want me “fixed”, as if I’m some kind of problem. My whole life, it’s been made abundantly clear to me that it’s not OK to be me, and then they wonder why I just keep to myself and don’t want to have anything to do with anyone else.

 

The chaos of it all makes the screaming in my head never stop… Like white noise, static, or maybe a huge crowded room filled with the loud hum of talking people— it’s just noise, like screaming, screeching, random chaos that makes me melt-down completely into a complete wreck, begging for the chaos and screaming to stop. Normal noises seem echoing, piercing, echoing through my head, through the chaotic noise, making it worse. I even seem to hallucinate awful smells… It’s like my brain has completely lost all ability to process everything. A CPU meltdown with little processing power left, let alone parallel processing. I can’t even do something, any activity, and talk at the same time — to be honest, talking at all is difficult… it’s like all the words have gone from my brain (although when I’m writing I have no such difficulty).

 

I’m scared. Confused. Vulnerable. On top of all this I’m also in immense physical pain from something I am unaware of. Whatever it is that is causing it, it is something that is making my existence excruciating. It is this pain that finally forced the breakdown… the virus. It’s one thing trying to juggle this existence, running patch-fixes on everything and essentially holding it all together with own-brand value sticky-tape. It’s another thing when this screaming agony sears into your brain from every cell in your body from your head to your feet, one that never goes away and never gives you a break. Then there is nothing left of your brain after it implodes to deal with whatever ruins of it that is left.

 

I’m on waiting lists. That’s it. No help given to me whatsoever. Just put on waiting lists. I can’t even take helpful pain meds — I can’t have any that are of any use because my system reacts badly to them. Anti-inflammatory painkillers could make me haemorrhage, and strong opiates give me delusions and mild psychosis. Those that I do take give me nightmares, so I can’t take them within at least 4 hours of bedtime, so I can’t sleep either from the pain. The pain keeps me awake until the early hours of the morning, until I’m so exhausted I pass out. Which also can result in horrible nightmares too. So it’s all win-win, really…

 

I am at a loss as to what to do. I’ve lost my job, my life, my sanity, my hope, my friends, my family… I am alone, in pain, scared and confused. Six months this has been going on, and now it’s really getting to me — the hopelessness of it all is leading me down a path I never wanted to travel down again. The one of despair, hopelessness, and despondency is the worst and darkest to travel, and it is one you always walk alone. Loneliness is one of the worst things to feel, and right now I feel the loneliest I’ve felt in a very long time.

 


Pain Hurts In Many Ways…

This is one of those bad days. And weeks. And months. Actually, let’s go nuts and say years… So far 2014 has sucked pretty bad. As was the last two or three months of 2013.

I’m in pain. I can’t work. I have to walk the dog, even though I rather struggle to walk from the pain (so I hook him up with harness and a lead and he actually pulls me, otherwise I can’t really go much of anywhere). And I’ve had to now turn down my wedding invitation to my cousin’s wedding, which I was really looking forward to seeing, because it’s about 300 miles away in Liverpool and I have trouble making it to the corner of my street (I live on the second house down from the corner). So that really sucks too.

I resent the fact I am “too ill to work”… My boss’ absolute opinion. Which is why he’s given me notice to stop working there. Apparently it seems that they quite like it when you turn up and work and stuff for them to give you money. They also apparently aren’t all that elated when you, well, can’t. Even when it’s not your fault and can’t move or walk or sit or stand. Not without a crapload of help, a back brace, and so many painkillers you have no idea what your name is, let alone where you are, or what your job even is… Opiate-based painkillers are just legalised haze of mild tripping for me. They’re not too great, but they make the pain kinda go away, so they’re also pretty good at the same time.

It can all get a bit confusing.

I’ve been trying to work from home. But I am currently locked out of my work laptop. Again. So I’m not happy. And rather bored. Despite the fact I’m fairly sure I will not do a very good job at wherever it is that is expected of me – if I actually manage to remember what it is. Data analysis is not so compatible with being three-sheets-to-the-wind.

I’m also staying in living room because feel mighty depressed and there’s naughty things in kitchen. Like knives. OK, they’re permanently blunt – for good reason – but it’s still not good to be there right now. The painkillers exasperate it all – give me that detached and numb feeling you get with depression. And nauseous. Very nauseous. Then the pain also makes me feel nauseous, and then disinterested and angry and upset and frustrated. As well as pointless, pitiful, and tearful.

It all basically replicates feeling that awful darkness coming back – so I’m not sure if it is, or whether everything together is just mimicking it all very well.

So I don’t want to eat anything, or do anything, or care about anything. I’ve had awful panic attacks, agoraphobia is having a party in my head, I’m getting awful vertigo between the pills, the pain and the fear, and I very nearly wanted to end it all yesterday.

Basically, I’m in pain and feel pretty bad. Pretty lonely. Pretty pointless. Pretty lost. Pretty sad.

I wish there was an A&E unit for broken brains, for when you feel like this. Stockpiled with tea, cuddles, puppy dogs, cats, and specially trained people to listen to you cry. Why is there no emergency services dedicated to people with conditions that make you want to do very bad things to yourself…? Unless you’ve actually overdosed, or actually there’s not much a regular ambulance crew can do for you. I would certainly appreciate one that doesn’t come with defibs and bandages, but instead comes with a listening ear, a Starbucks barista, an incredibly cute little doggy or adorable cat, and maybe a stockpile of emergency chocolate. One with trained professionals who know how to stop you from wanting to run to the kitchen for a knife, or the medicine cupboard for everything inside it. One that comes when you’re pushed beyond your limits and you need someone to stop you needing the real ambulance.

I have an appointment with the doctor again. I’m going to be asking to be dumped on a CBT waiting list. I need help dealing with being left suddenly incapable of doing anything without a boatload of painkillers and angry stubbornness. I hope I manage to stay in one piece until then. The last time I put myself in hospital was 15 years ago… I’d like to continue to be able to say that. I really don’t want the end of that sentence to suddenly read “today…”

Doggy (that would be Soul, my loving Staffy mixup) is with me now, lying on me… protecting me. In the state I’m in now, I don’t want to contemplate what I may have considered if he wasn’t here.

Luckily, he is.

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