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: confused
I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.
Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.
This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!
The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.
Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.
As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…” etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.
It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.
This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.
What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.
Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.
I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤
I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.
No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.
Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨
In other words, we can’t just manifest crap because we prefer it.
If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤
I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..
Maybe it’s the ASD. Maybe it’s just (or/and) Alexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?
What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.
So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?
Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.
To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.
I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.
I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.
I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.
I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.
It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.
There really is only so much that a person can take… and I passed my limit a long time ago.
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 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 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…
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…
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  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”.
I 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.
It’s one thing to like having things done a certain way… it’s another when you’re almost completely reliant on someone else, or other people, to ensure that they still happen that way.
Having an illness that strips away your ability to physically do things yourself after being always (physically) independent is incredibly… awful. Being unable to dress yourself, get your own coffee, make food, shower, walk, move – at least without a lot of help and/or extreme pain – is heartbreaking, upsetting, frustrating. The pain sears my brain, and I’m left asking for help. I don’t like asking for help and I prefer to do as much of everything that I can myself. Left like this is a living nightmare… especially the part on being reliant on someone else other than myself for things. I’m a firm believer in if you want something done, do it yourself. Now I have no choice but to get someone else to do it instead.
The worst part of that is that I like things done in very certain ways – rules, preferences, ideals. I used to just be OK managing them myself, and therefore no one else really needed to care because I did them all myself. No one else needed to know, understand or care about it too much when I could do it myself. But that was then; this is now. Now I can’t do them. Other people have to. I’m always now reliant on another person, someone else, someone not me, doing them. It’s disheartening, disempowering, frustrating, annoying… awful.
Now they have to care, and I have to try to get them to understand that it’s important that things get done in the same way I did them, that I need to have things done “right”. The thing is, there’s also something else: when things don’t happen or get done in my specific way, in the same way, in the right way [for me], in the way I like them done, I react badly. It’s like my whole world crashes down on me. I become scared, confused, lost. Those routines are the building blocks of my existence. They keep me happy (or my version of happy), keep me grounded, keep me “OK”. (this is the bit where you don’t judge me…). I am not “a slave” to them; they are my way of making life work for me, to deal with my existence in this world – in your world… to make the “every day” stuff everyone else seems to be fine with make sense to me… otherwise I am lost and scared. I panic. My brain shuts down and it disintegrates. Then bad things happen.
But I am not crazy. Nor am I stupid, mad, demanding, manipulative, or anything else everyone has always called me in regards to this. It’s just me, and I can’t do anything about it. I’m scared… What do you do when you’re very, very scared? I didn’t say it was rational; it’s just real. My truth. My brain. My fear.
My panic. My Hell.
It’s apparently because I have this thing called Asperger. I wasn’t too happy to learn that. Ironically, even the thought of it stressed me out so much it made it worse. On the other hand, it was pretty clear when I read all about it that was what the “problem” was, though. My parents read about it and just went “… ohhhhhhh“. The lightbulb moment was clear with them. The general reaction apparently was: “Well, that explains a lot“… For me, though, it was just one more label to stick on the back of my collar, and I didn’t like that. I didn’t need a new label; I just wanted to be able to do my own thing again, my way. I had it, whether I had the label on my records or not. What I wanted was someone to give a label to whatever the hell was wrong with my body, then fix it. But that isn’t what I got. And it’s not fixed.
I have a diagnosis, but it’s not the one I wanted. I’m still stuck with being unable to do most things on my own. Thing is, just like pretty much most other people with ASD, a big part of being “OK” is that everything is the same. Take that away and it feels like your world is falling apart. When I could do everything myself, it was not so much of an issue. But when I’m almost entirely reliant on someone else to do it, then I have a problem. Good intentions unfortunately don’t make it right if it’s done wrong… and even though to everyone else it’s the thought that counts, I’m afraid I can’t deal with it if it isn’t right. I honestly can’t help it, change it, or “fix” it. It’s just how it is. I know… I’ve tried everything I can imagine to make it go away, and it just won’t. This is just how my brain is. It’s not like everyone else’s. It simply doesn’t really work properly.
After more than 30 years, someone has finally told me why my brain doesn’t work properly. However, this is a diagnosis that doesn’t make everything all better and go away. You don’t pop a pill or have some surgery and get all better. There is no “getting better”. In a sense, there’s nothing to fix… it’s just a thing that makes you different. We don’t all have brown eyes, we’re not all one gender, we don’t all like the same things, some people are puppy-people and others are not… We are all different. OK, mine might be a bit stranger, but it’s just mine. My brain reacts differently to things, and that’s all there is to it. I have Asperger that you don’t understand, but maybe you have a strong affinity towards Gansta Rap music and a penchant for pink that I’ll never understand. That doesn’t mean either one of us is wrong. (Although pink of any kinda really is…)
And if only I really saw it all that way… If only everyone saw it all that way. (Not the pink-thing, the other thing.)
At the end of the day, it’s just a name for what’s wrong. It doesn’t change the fact it’s there, or ease my suffering – and yes, I suffer. It’s not at all pleasant being left lost, scared, and confused because something wasn’t done “right”. It’s not my choice, I don’t like it, I don’t want it, but it’s there and I can’t change it. I can only control what goes on to ensure feeling that way doesn’t happen – or happens as little as possible. It’s not worth the consequence if it does.
What really needs to change is the pain. Having the chronic pain has taken away my ability to do what I need to do to be OK. I am lucky that about 90% of the time the people who help me go out of their way to ensure things are done “right” for me, out of kindness and understanding. The other 10% of the time unfortunately leads to extreme breakdowns, or “meltdowns”, as my brain is unable to somehow distinguish that despite it not being right it’s not something to panic about. The result is a terrifying mental breakdown and blackout created by an extreme panic attack that execrates into a “meltdown”. During it I am not really aware of what’s going on, I just want the panic to stop. It’s exhausting and traumatic, and I’m quite willing to do what it takes to ensure they don’t happen. Most kids get diagnosed young and spend their lives learning how to deal with what’s going. I grew up in the back-end of north Wales and the best my mother got for my strange behaviour was, “she’ll grow out of it”, followed by mixed psychiatric diagnoses. The one that stuck was Depression. So I got treatment for depression… and, strangely enough – who’d have thought – that didn’t work. Nothing worked. Now I know that doing the little things I’ve always done to keep my mind tranquil and “happy” is what is required, and I do them. When they’re done, I manage. When they’re not… well, things don’t go so well and I end up back in that hell I hate so much.
What this ridiculous amount of pain has done is taken away my ability to cope. I spent my whole life learning techniques on how to deal with things that fall out of these strict parameters I built for myself. The pain sears every cell in my brain and takes away my ability to think, my ability to remember how I’m supposed to manage things if they go wrong. The pain causes stress and suffering, flaring (for want of a better term) the other thing that I have, and rendering me in that state of lost confusion, terror and panic. I need to do things myself, in my own way, to manage – taking that ability away is a living nightmare.
The Pregabalin has brought some of the pain under a little control, but the other side is the side effects screw with my head anyway. I’m walking a tightrope I keep falling off. I’m walking it alone. I had (stupidly) assume I would have some kind of professional help, but I don’t. Certainly not on the pain-side. There, I’m left to my own devices, having had nine whole months to deal with all this until my next (second) pain clinic appointment, the pain continuously getting worse. As much as the Pregabalin masks, it doesn’t mask the fact it’s getting worse and I can do less and less.
I apparently actually have two crappy conditions that contraindicate each other. Both are crappy and both are rubbing each other the wrong way. One just aggravates the other, and the meds just gets in there and makes everything even worse when it’s not actually doing its job and helping.
There should be help, but there isn’t. The NHS pain clinic here is overburdened, and ergo useless. To have almost an entire year between appointment one and appointment two is mind-boggling, especially when ordering an MRI right away, eight months before you’re even going to see the person about it… and by then it’s no longer relevant. In the meantime, I continue to get worse. Also, in an ironic twist, I now have that pain everywhere except in one of my fingers – which is now actually going almost completely numb. It’s the only place I can’t really feel pain… or much of anything, really. Actually, it just feels weird. That’s the last thing I expected to experience with all this.