My Story… My Life…
The Second Time My World Imploded into PTSD…
When I was 34, literally my entire world fell apart. I was so ill I couldn’t move and was in 24/7 agony from Fibromyalgia, and after 2 years of this illness and 10 years together, my partner snapped and she sent me home to live with my parents. Actually, she asked them to come and get me.
Just one random day. She stopped texting me. Then vanished. Never came home. I freaked the crap out. Turns out she went to her mums house. I had to track her down. And her step dad was a bitch to me on the phone.
Then she told me everything was done, we were done, and she wasn’t coming back until, I was packed up and ready to go.
My. World. Died. And. Ended. In. That. Moment.
She took the last remnants of things I had left — and I had already lost the career I loved and the data migration project I was just about to start. And destroyed them. Just one random day. Just like that.
It was nearly 4 years ago, this November it will be.
It was utterly sheer hell. I didn’t know if or how I was ever going to survive. I was delirious with agony and pain, screaming and blacking out from it every day, my parents were yelling at me, screaming at me, doing other bad things at me. I had several meltdowns per day. Everyday. The worst ever kinds. I used to come round to disaster and injuries I had no idea about constantly. It was horrendous…
It went on for years… I tried to OD twice. Was in an ambulance for it. It was a waking nightmare of exceptional proportions.
I don’t know how or why I am still here… But I am. And, frankly, I’m proud of myself for that.
And I survived long enough to get a very special person back in my life. And it’s in a better way this time too …. 🤔
So… I get it. I truly undoubtedly do.
And, also, that is how I know that others can survive this. Because I have, I do. We do. Cos we’re strong and kick ass and have to take far more than anyone could ever frikkin imagine. All. Day. Every. Day.
Tag Archives: isolation
| 9°C |
Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.
I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.
Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.
I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.
I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.
Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end…
Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming Me… Destructive, Harmful, Destroying.
I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy…
The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.
Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.
These Feels are… Heavy… And I don’t like them. I only want them to go away.
#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration
Today is the anniversary of when I first was taken into hospital…
On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.
Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖
My brain is trying to process it, rather unsuccessfully, to be honest.
However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.
To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯
A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…
The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜
I think I may have some understanding of the awful situation you’re having to deal with — I have had Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.
Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.
I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.
The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….
Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…
It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.
I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?
I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.
Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.
The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.
Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.
I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?
Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.
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…?
It’s easy to believe – too easy sometimes – that the actual entire universe is against you no mattter what you do. In fact, the more good you try and do, the more it punches you back in the face. Perhaps this is especially true if you’re already struggling, and you just want that one day, or one time to go right. Except it doesn’t – and not only does it not go right, it actually goes spectacularly wrong.
I find it that every time I want to do something good for myself, I (effectively) get punched in the face for it. Every time I try something positive, good, enjoyable, I get knocked down. I end up writhing in pain, on the floor in unbarable agony – or I am somehow flung into an unimaginable nightmare of a meltdown that never seems to end. I genuinely left to wonder why… Did I do somthing wrong, against the Universe? Did I break some cardinal rule of the Fates in having a good time? Just why am I on the floor, literally screaming in agony, after doing something good? It’s a question I am constantly battling with.
The fact I cannot seem to do anything without dire concequences rests heavily upon my shoulders. I know I must weigh up every single thing I do against the pain I will have to endure in concequence. From getting up to fetch something on the other side of the room, to going out for the day to do something nice like shopping or to the cinema, must be carefully considered because of the enormous quid pro quo: “You get to go out; I get my agony”. It’s either hours of agonising pain or a meltdown. It’s usually both. Triggered by each other, plus absolute exhaustion. There seems to be no way around it… No matter what I do.
Yes, it’s part of having a chronic illness; a condition that will literally never let you sleep (or lie down, sit, stand, or breathe) easily. It’s just an is. But it’s so very hard to see it as just that. Too easy to see it as the universe being dead against you being even remotely related to happy. It’s easier said than done to see it in a different way.
Because I cannot use normal painkillers to help me deal with the Fibromyalgia, I rely on Pregabalin and stubborn will power to overcome the pain – ignoring it as much as possible is the closest thing to a constant analgesic that I have… and ergo that defense is easy to breach. When the pain does come, it cripples me inside and out, thus I always weigh, analyse and constantly re-decide what I should do… So, I rarely go out. I rarely leave my room. I rarely do anything at all. Much to my detriment.
I have Asperger’s, so I’m not all that enamoured by frolicking amongst people. However, doing certain things are just quite vital to me being me, and this constant fear I now have about “being punished” (we’re calling it that for now) for it makes me just not want to do anything, even the stuff that I love. Take today for instance: I went out to the cinema to watch a movie that I had a really great time watching. I drove to the nearest IMAX, about an hour away and enjoyed late lunch/early dinner before the viewing. It was a two-hour movie, and I did not drive back because I can’t drive in the half-light of dusk. By the time I got back, I could barely haul myself out of my chair to get into the house with my ti-wheel frame… then I collapsed on the stairs I was planning on crawling up back to my room.
The pain wasn’t even in sight of the ten-scale. It was way, way off, enough to make me scream (and I’m fairly used to this crap by now). It was bad enough to require two shots of cognac and a glass of wine to make it subside enough so I could actually breathe. It took a long time of lying still to come round from it, and gather up the courage to get up again. It took the stubborness of ten bulldogs to get myself crawling up the stairs and into my room. I’ve had another extra glass of wine, and it still hurts – but it’s down to about an 8 now, which I find almost tollerable these days.
All this for the sake of going to see a film I wasted 2 hours of petrol and about £20 on seeing (if you include the popcorn & Sprite). Was it really worth it?
I honestly don’t know how to handle this about myself, about this condition. Both my conditions really – a flareup of one will always set of the other in some way. I don’t want to stop doing things… like moving, breathing, going out to see good movies… but I do not want such horrific concequences every time I do so. How can I possibly tell myself that going out to see a movie is a good idea, when I have to go through that after? What is the point of going for “a nice day out” or “a good walk” (OK, “wheel“) if that is what I’m going to be facing after? It’s no longer really “a nice day out” anymore… Certainly not for me anyway.
I’m not quite sure if it’s stupidity or stubborness that makes me go out there when I do, knowing what is going to happen afterwards… and always rather rediculously hoping that this will be the day I do not get it. The movie today was good… good enough I’d probably say it actually was worth it. But those are very few and far between. I would like to go and visit places, but the thought of having to endure what comes after makes me cowardly shy away from even trying.
Am I being punished for trying to do something other than be ill? No one can explain to me why I even have this condition in the first place, let alone why I would be “punished”. There’s never a break from it if I do go and do something… the only resemblance to maybe 20% of what might almost constitute a break is when I’m sitting down on my beanbag doing nothing. Not a single thing. Bored out of my brain.
There are times I do the self-pity thing of “why me, what have I done to deserve this…“, but to be honest, there would be no answer that would even be good enough anyway. For each and every thing, every choice, every movement, each decision must be weighed on its own merits, and the decision has to be lived with… and I can’t really win either way anyway, since I’ll get almost as much pain from sitting still and doing nothing, leaving my legs to cramp and stiffen. Few things are genuinely worth the effort, making my already rather short outing list even shorter.
I do wish there was a way I could look at it that was philosphiocal… something other than it just is. Acceptance without explanation isn’t really in my vocabulary. I wish I could think of the fact that “at least” I did such and such. But I don’t. If I’m going to feel that much, then it needs one.If I’m going to face something I’m that scared of (and I’m scared of that much pain), then I need a good enough validation for it.
But instead of answers, I’m just left with questions and the great unknown… “Why…?“
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.
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.
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-dramatic. Catastrophic. 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.
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.
A snapshot in time – Moments before it all went so wrong: The final diary entry before everything crashed and burned around me…