Tag Archives: lack of focus

Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?

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Lost…

A Question of Sanity

 

There’s often  the question posed when someone has to deal with chronic illness, one that appears after some time has passed, which is, Who am I

In this case, I feel that everything that I have ever identified myself with has been taken from me. The list covers everything that I’ve enjoyed – leaving me to ask that very question… because now I don’t know if I could even begin to answer that question anymore.

The worst thing is the lack of focus… if you don’t count the singing, that is. Focus has been the driving force in my life – from reading incessantly to obsessively playing games, tinkering with computers, writing music, and – yes – singing. And that’s the top 5 of quite a long list. It was never great since the fibromyalgia reared his pain-creating head – however, since moving to the Snowdonia area, it’s vanished. Permanently. And with it, everything that is what I see as being a key part of “me”.

The thing that hurts most (… if you don’t count the singing…) is the reading. I can’t read anything anymore – not books, magazines, online articles… even listening to audiobooks isn’t possible. My filled Kindle is going unused, my stuffed Audible apps go unheard, my magazines pile up ignored, and all break my heart because I have loved reading almost since before I could walk and now I can’t. Each time I attempt to do so, I have no recollection of what I’ve read. Instead of reading I skim over the words and take none in.

With focus, my curiosity has gone. This used to be my favourite thing – reading, playing, singing, travelling, driving, listening, studying… just learning was my favourite thing to do… and focus was the main tool for that. Maybe it’s because I can not longer move, so I can no longer explore. Perhaps it’s purely biological – not enough sleep basically messes with your mind rendering concentration, sense and memory almost useless. Or it’s the medication… but I do imagine it’s all of the above and then some. How to change it and get it all back…? That is the question.

I did appreciate what I had at the time, but still… I didn’t quite realise how much I was going to miss it all until it was gone. It’s disconcerting and frustrating. It makes me feel sad and lost. I want them back, and I’ve been trying lots of ideas as to how to manage that, but it’s not working. Particularly with sleep, which I seem to be getting less and less of now.

I used to be quick, intelligent, curious, focused, multi-faceted and even at my previous worst I found things easier than I do now. It’s even taken me quite literally hours to write this short blog, due to fatigue, loss of focus, pain, and lack of any ability to concentrate my thoughts into something vaguely coherent. Because of this I’m left continuously bored and upset, not to mention annoyed because there’s so many things that could be done and I cannot undertake any of them.

I would like it back – all of it. I would like to ease the hyper-vigilance, stress, hyper-anxiety, fatigue and exhaustion, insomnia… but it’s a vicious circle when all you can’t do the very things to help you relaxed because you are far to anxiety-ridden to be well enough to do them. So I can’t really relax. And so on… I see the world only through my mind, my ideas, the data that learning and reading offers – without those things, the world makes even less sense than it usually does, which in turn makes the stress even worse.

I hope that some of the ideas implemented might work – if not individually, then in tandem. I could then perhaps I could get back to me.

 

Or at least to sleep.

Lost...


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

 


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.

 

 

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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…

 

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The Pain Game

I am unable to focus. Unable to think. Unable to feel… except the pain. There is nothing but the pain. It’s been  around 914 days since it started. About two and a half years. All that time where nothing else has mattered. I used to be “me”… but now there’s nothing but the pain.

My average day ranges from a “good” 7 to a horrible 10+. If it’s really good, it might go down to a 6.5 – if I’m really lucky. Basics are hard, or impossible. Even typing is a strain on my pain barrier… making things like learning code or playing with a Linux system difficult or impossible even if I could think straight. I have to live in a world where I’m classed as… OK, I can’t say the “D” word. It’s where you’re incapable and industrialised – where you need things to help you, but they look like an institutionalised little old lady threw up on them.

I used to do yoga. I used to sing. I used to dance. I used to read books like my life depended on it – all kinds of them. I used to watch movies. I used to work. I used to do a lot of things. Now I do almost bugger all. There is so little that I can do. The pain, lack of focus and current memory problems (thanks to the meds) are pretty crippling, both physically and mentally. I wouldn’t mind so much the lack of movement if my brain could work… but it doesn’t. On good days I take advantage, but there aren’t many of those.

The worst is not being able to play games nowhere near as often as I would prefer. Games help clear my head, help me think, help me analyse, help me relax, help take me away into another world. Having that taken away from me is quite the last straw. To add insult to injury I also can barely hold up my iPad anymore (the iPad [4] Retina weighs nearly double the newer iPad Pro/ Air 2) – meaning reading and writing on it are getting impossible, and I do not like using a stand (don’t ask, it’s a long explanation…).

To be frank (and to use colloquialisms) it’s “messing with my head”.

Stars_Can't_ShineI am particularly convinced there are many ways to deal with and combat this – but the fact I am unable to work out precisely what any of them might be is leading to making me feel constant depression and heightening anxiety. I want to do all the things that I can realistically do – a little basic yoga, coding, gaming… but I do not know how to control the pain or my response to it. And my response to it is not especially good.

It does not help that this causes more physical complications… otherwise generally known as “psychosomatic” symptoms – where anxiety and fight-or-flight hormones become effectively toxic and cause “stress-related illness”. I have enough going on without having them too. The pain is like a cruel and sadistic captor, keeping me hostage with its games and strange punishments… and sometimes I wonder if I’m beginning to experience Stockholm Syndrome – just doing as it says all the time, not thinking for myself or making my own decisions. Actually, no – I’m pretty certain I have it.

Stars may shine with darkness, but I do not. I am a prisoner of the pain and I am not strong enough for this. I have already been through one gauntlet and I thought I had come out the other end. Am I still in it, or is this a new one? Either way, I feel twice my age, exhausted and tired of life. I am tired of the pain. I am tired of being tired, and  of being entirely emotionally drained.  I cannot be that person who shines in adversary – not now. It was hard enough the first time, now I’m just too old and tired to manage it again.

I am lost.Lost...

 

 


Illness More Than Pain

ILLNESS MORE THAN PAIN

ALONE IN THE DARK
Helpless. Hopeless. That is how constantly being ill makes me feel. Just… like I’m nothing much at all. Like I’m empty, pointless. I am so tired, drained – like I have nothing left.

There is the problem that these times of illness trigger the chaos in my head that depression causes. Not only do you then have to suffer the physical illness – this time, it’s pneumonia – you then become susceptible to the voice of the “Demon” in your head, who sees you’re vulnerable and weak, and cheerfully heads straight in to make everything much, much worse.

I’m an IT contractor: when I don’t work, I don’t get paid. It’s one thing to be ill normally, and not get enough money in (at least you can live off your savings) – but it’s another matter when you’re also forced to use up all those savings to pay for a new flat to live in, as well as having to move into it within the space of just over a week. With no money after putting down an extortionate amount of it for a new flat, and no more coming in either, it’s a nightmare. You’re ill, exhausted, the demon has come to chatter hell into your ears, and then you can’t afford to to live because you’ve just put every penny you have into a roof over your head, and unable to go out to earn any more.

I do not understand this society’s attitude to illness – particularly mental health illnesses. As if being ill with “normal” things (i.e. Ones that are recognised by your average person and doctor) isn’t bad enough – and you’re lucky in this cold and selfish day and age to get any response for having them – those of us who also suffer depression, bipolar disorder, anxiety disorders (etc, etc, etc) have to also deal with these illnesses. But then on top of that, our mental health illnesses become even more magnified – because with a weakened body you have no ability or strength left to struggle with these things that take over your mind.

But nobody seems to care. As if it doesn’t matter. As if you don’t matter. Letters come through the door demanding money you don’t have (so they go in the recycling, unopened). Phone calls come in from people on the other end, paid barely minimum wage and calling just to upset you, to threaten you for money you don’t have (so the phone gets ignored/ turned off/ unplugged). You hope there will be no knock at the door from others demanding more money (so you hide in a corner with the lights out and curtains closed). You freeze or cry or panic because there is nothing you can do, and you just cannot cope with it… And nobody cares. The humanity is gone from this world – the god of money replacing basic kindness, understanding and sympathy. There seems to be nothing that will help the pain and fear inside you.

I manage my depression every day – amazingly I manage this fairly well without medication, too. Every day it is a struggle and constant battle, but it is one I generally win overall, despite the metaphorical and emotional scrapes and bruises I end up with at the end of each day. But when I am ill, this battle is lost before it’s begun. My world becomes distorted because I am so tired, drained and in pain – then the demon comes to feed off it and make it a hundred times worse. Soon, I live not just in fear, but in terror. Paranoia grips me, helplessness suffocates, and chaos breaks loose in my mind – bringing a maddening cacophony of noise and nasty, malicious words that I cannot think through. It fills my head, like an auditorium filled with very loud people, all trying to be be heard over each other, until my head feels like it’s about to explode. The words I make out are usually awful ones, telling me how pointless and hopeless I am. Sometimes they are other ones that make me panic and flounder just as much. What I don’t get in any of this is any semblance of sense or tranquility – nothing but painful voices that hurt my very soul.

I cannot hold a thought longer than a moment before it flies off towards another. I can’t think, I can’t focus, I can’t do anything… It disorientates me, frightens me, and emotionally cripples me. And through it all I’m still suffering the physical pain and distress of the pneumonia too. I don’t know where to turn, and there is no peace to be had anywhere.

Soon enough, I feel it all become much to much, and the same compulsions come to mind again. Starvation, self-harming, inhaling up the codeine pills like they’re going out of style, eating nothing but junk food… I could do all of them, if I gave in, just like I used to. But I don’t. I still have that much power left inside me. But it really does take all the willpower I’ve got – and even when I’m in pain I stay clear of the codeine pills and suffer the pain, because I know the slippery slope I will end up on if I take them.

AN OASIS IN HELL
My distraction comes in the one salvation I’ve had over the last few years that has had me turn my back to these compulsions – my games. Playing the stories of RPG protagonists who are strong, wilful, clear-minded, helpful… even saviours – battling enemies that cripple – even kill – weaker and lesser characters in the game. They are real heroes – the ones who run into the fight when everyone else is running away.

They inspire me to do the same to my own demons. They fight dragons, demons, evil dead things, and other monsters (or aliens) whose sole goal in their existence is to annihilate the world the general population of characters inhabit. They slay the evil that threatens to destroy everything in that world, lead others into the battle, and don’t back down until those things are gone – no matter how impossible the battle or war may seem. These are things I am reminded to do with my own evil that lives inside my own head. Instead of running and cowering, I should take it head on and lead the battle into my own hell to ensure I defeat it. The heroes of these stories might be afraid, they might be excited for the fight – but either way, into the fray they go.

Once again, they have helped me immensely. At its worse, they quietened the cacophony enough to have at least some peace from it, some semblance of space in my mind to breathe, think my own thoughts. They require almost no physical effort – important when you are struggling to breathe and find it difficult to walk even a few steps. They require the mind to be clear, to strategise, to focus on winning, not being beaten. Instead of taking sharp knives or breaking glass to cut my arms, taking about twice the daily recommended dose of co-codramol, starving, or bing-eating, I am slaying dragons, battling evil dead things, or fighting aliens. Being inspired to be strong enough to fight my own.

No matter how impossible the battle or war may seem.


A Chrysalis To Butterfly…?

So… The dark cloud descends again. I wish that it would find a hole to crawl in and stay there. But it won’t. It’s just decided to come back again – taking away that sense of myself that is already so fragile anyway. I feel like I am losing a lot, and its simply losing yet another battle in a war that can never be truly won. I now have no job, I feel constant pain, I’m exhausted and ill… I’m wondering when the good stuff is going to turn up.

I’m trying to do new things instead. I’m not sure exactly how well they’re going – but I hope for success in the end. This is hopefully where my stubbornness is used for good instead of evil… I can’t help but feeling I’m deliberately being stripped of everything I thought I once had and wanted (and I admit I didn’t really want all of them – the job, the life, etc; it just wasn’t ‘me’) – but at the same time I had some stability, security and understanding of the world through them. Now they’re going or they’re gone, and I’m not left with much. Maybe it’s to make room for better stuff, or at least different stuff. Maybe they’ll be things that will be more truthful and fulfilling to the life I really want… Who knows. It’s just a shame the pain, or dark cloud, isn’t something that’s also being taken. I could live without them.

At this moment, it’s hard to see the wood for the trees, to see hope or care about anything. That’s what the dark cloud does. That’s what falling down the rabbit hole is. It’s a dark world that doesn’t make sense, and strips away everything you thought once did. It comes for you when you’re vulnerable – when you’re tired, low, alone, and floundering. It helps you drown, and there seems to be no way out – no way to stop it from happening.

I feel like I don’t know anything anymore – everything that was once comforting to me, in its familiarity at least, has been taken away. Even hope right now seems like a distant ideal; something that can’t be grasped or even imagined. I’d like to think my life of being a caterpillar was coming to its end; simply that the chrysalis is being prepared, to wait for the natural phenomenon to occur and metamorphoses to be complete. To do so, I leave things that a caterpillar needs behind for the cocoon stage, only to pick up what I truly need after, when I have grown to become the butterfly.Pretty Butterfly

… A flight of fancy, maybe. A nice little image to cling to. It would be nice if it was true. Of course, I don’t know that it isn’t true. But nice things don’t tend to happen to me. I’ve struggled always; nothing has ever come easy… So you’d think I should be used to it by now. Except I’m not. I’m downright tired of it. It is tedious to have to struggle for everything – even the simplest things that people should be able to take for granted. Like breathing, or walking, or eating. And if I’m supposed to learn something from my trials and tribulations, then the point is lost on me. I try not to think too much about it, put my head down, gather my courage, and keep on going through the storms. If I do try and think about it, I start falling apart. I’m tired of doing that, too. I write to try and get it out of my head and out of my heart – so the morose feelings can be given to the ‘page’ instead of letting it live in me.

At the very least I would like the hope to come back. The dark cloud keeps chasing it away; I wish it wouldn’t.

 

 

Not A Challenge


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