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: illness
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 … 🤯
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…
These have recently become my new best friends…
* * *
The reason: The ability to now have better peripheral orientation and physical awareness. Part of me hopes they might also help tone my arms and legs… but I couldn’t care less if they don’t. With these, I know where my arms and legs are, and I know how to use them again.
First of all – it’s complicated. I am complicated. In having both Fibromyalgia and Asperger Syndrome (ASD), there have been many complications, and this has been one of the major ways they have conflicted against each other.
First of all, I’ll start from the beginning: From a child I was not the most active but enjoyed things that required muscle co-ordination and strengthening – country walking (hills, streams, caves, etc.), clambering (no heights), `then onto horse riding, yoga, singing, dance and city walking as I got older. All of these have one thing in common – strengthening muscle control and balance. Quite instinctively, I was clearly drawn to things that combated my (what is now very clear) problem with orientation and physical awareness.
Unfortunately, the Fibromyalgia hit. The pain endured meant I very quickly did less and less as the pain level rose inside me. Eventually, all that work I had done was lost. All muscle tone, strength, control was gone – and my “problem” was uncovered… but without actually knowing I had ASD and sensory issues, or that I required “sensory diet” assistance, I was lost, scared and frustrated. Even after diagnosis, it took a further two years to discover sensory issues and about the Sensory Diet.
When I found out about it, I did more research and thought about all the things that has assisted me in the past, when I was most “stable”. First I remembered my love of corsetry and giant Goth boots – in those I had felt the most confident and happy in myself, so much so I used to wear them almost all the time – so I got them again, to help me now:
However, I realised I needed far more than that, because you can’t wear them all the time – corsets really shouldn’t be worn for extensive periods, and boots usually get taken off when indoors, or at least when you want to sit on your bed/beanbag and write/use PC, etc. I thought long and hard and came up with nothing… until one fluke recommendation email from Amazon turned up in my inbox: It had hand and leg weights in it. It was then I realised this was my answer – perhaps recreating the weight of the boots would help.
When I put them on, the difference was so astounding I couldn’t even describe it. It genuinely felt like I had been “plugged into” myself again. I was aware of what my hands and legs were really doing for the first time since I became ill, able to control fine motor skills “automatically”, instinctively, and able to move in a more natural way. Able to type almost as well as before, able to walk without falling over my own feet. I stopped being clumsy and dropping things. Just like I had been able to walk and move better with my big boots on, these worked in exactly the same way. It was quite incredible.
There was another “side-effect” from this – my focus, calm, control, outlook, all became clearer, and far more under my control. I was even able to control my response to the pain better, hence able to endure more, to block out more, thus being able to do things a little easier, and a little more than I could before.
Ever since I found this “Sensory Diet” I did not have a major meltdown for over a month. They were more controlled. Shorter. Less devastating. Slightly less exhausting. I had mini-meltdowns, but they were controlled fairly well, did not escalate. With the weights, the situation is even more controlled, and even mini-meltdowns have been shorter and require a few quiet minutes of deep breathing to assist the “buzzing” or “chaos” in my head dissipate. I had one big meltdown, but the circumstances were quite exceptional.
With the weights, I have been able to cope with situations, with pain, with things that usually caused huge meltdowns that I could not have managed before. I have been able to manage more, play my games, watch TV or movies I otherwise wouldn’t have been able to watch, able to read and write more, finding new books, or having better or different ideas … having any ideas at all, in fact.
I went to Caernarfon, walking with my 4-wheel X-Folding Walker, in a corset, my big boots (as above), my weights, and Doggy (Soul). I managed (with many, many rest stops) to walk around, deal with the pain, and even walked across what I deemed to be a very scary bridge without even thinking about it – until my father pointed out to me that usually I would never have crossed it. I wasn’t even aware that I really had. I just wanted to see what was on the other side of the river, so I went. I never even thought about the bridge, and gave it no consideration whatsoever. It was a huge breakthrough.
Yesterday, I went to see a new (used) car that my father is getting to replace his 30 year old campervan. He had found a beautiful Suzuki 4×4 that was built like a small tank and had plenty of room for all my gear and the dog, as well as the rest of us. It also meant that, given we lived in the middle of Snowdonia, we would have a more reliable car in all weather that we can get up here (floods, ice, snow, torrential rain, etc.), and we would be not only safer, but able to drive into places we might not otherwise be able to get to up here in the mountains. It was a beautiful car, and an automatic. In other words, it had potential for me to drive it.
I sat in the driver seat. The transfer from my chair into the car was ridiculously easy (compared to my experience trying to get into other cars), particularly helped by the footrail under the doors, and handles over the doors. Then there were the seats in that car – they could all have been especially made for me, from my own specifications. They were pure “Goldilocks” seats: Quite perfect. The right height, just hard enough, just supportive enough, just comfortable enough, the contours just in the way I needed them to support my back and legs. I had my arm weights and big boots on – and when I sat in the driving seat I felt like I could have just put that car in gear and driven off, without a hitch or problem. I knew and remembered exactly what to do – something I never thought would actually happen to me again (though others were rather more optimistic for me – turns out they were right… damn it!).
This meant that now I really, truly might have the opportunity to “learn” to drive again – as in slowly get used to being in control of a car… and an automatic one at that (I’ve always driven manuals). I have forgotten nothing about how to actually drive one. Driving was a dream of mine when little, and the day I passed my test was one of the best days of my life that I will never forget. It’s always been therapeutic – you have to focus on the road, so helps keep my mind in a calmer state… everything fades to nothing when there’s a road ahead of me, and perspective returns. Not being able to drive has been as torturous as not being able to sing – they make a huge difference my emotional and psychological health. The ability to drive again would make an enormous difference to me, my life, and my independence… which is what I have needed since I became ill with this thing.
All I want is to be is in control of my conditions, work with them, and have all of us work together as one, not against each other, leaving me in a ball on the floor, crying and in agony. The weights go an enormous way towards achieving this goal – they have allowed me to gain control of myself, and my physical awareness. There is a possibility now they will be able to assist me to focus enough to read, learn, code, write, play my games, and even drive again.
I should ask for it to go, but I don’t. What I ask for – what I’m looking for – is to simply be able to live a fairly enjoyable existence with these conditions. I’m quite happy to compromise with them and play ball, as long as I’ve been given the tools to do so. Now I’m getting closer to this. If I am able to drive, even a little, and with company, then I have one more extra tool to cope with my situation and one more thing to enjoy.
On The Other Hand…
There is a flip-side to all of this – one that most people would probably not understand:
Change is bad. I have ASD – it doesn’t matter whether or not that change is good or not, change is bad. With time I get used to the positive or negative inclination of the change, but the actual change itself is bad. Traumatic. Frightening.
The initial change, when Fibromyalgia hit, it was traumatic. When I lost everything, it was traumatic. When I had to leave London to live in the Snowdonia Valley, it was traumatic. But now that things are stabilising… I’m also finding it disconcerting, if not quite traumatic (…yet?). And like I said, it does not matter whether good or bad, these things are difficult to cope with.
So far, the changes have been slow to come – in drips. Luckily. They’re more unnerving than a shocking trauma because of the slow and steady exposure to them. Since I’ve been dumped here, recovery – or, at least, acceptance and acclimatising – has been slow and excruciatingly difficult. Stabilisation has been slow in coming. Learning curves have been steep, difficult and painful. In some ways, the things that have come back have been so natural, it has been comforting to have them returned, rather than seeing them as a change. Those are the good ones that makes life easier and more positive – I can do things naturally and normally without having to think about it (having to think about it actually physically hurts my head). This frees up space in my mind for other things that it should do, like learning, reading, playing, relaxing. Even space to cope with pain and “buzzing” that causes meltdowns.
The hope for the future grows… and with it comes the possibility that such a thing may be a destabilising factor. I’m trying to keep this in mind and ensure that changes in anything comes as paced as possbile, so I can deal with them. If too many happen at once, they can cause quite a reaction from being too overwhelmed by them all. Now I have weights and the car come almost at once… now things require pacing otherwise they’ll become too much and be detrimiental, regardless of how positive everyone else might think things are. An overload is easy to create, and I want to do everything I can to try and avoid such a situation – I do not wish to take too many steps backwards after working so hard to ensure my conditions are stabilising into a workable model.
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…