It never ends…
I really hate these flare-ups… Is it just Fibro, or is it more? I’m just so exhausted I can’t think straight, or even at all, anymore. It makes me so ridiculously ill, so tired and drained, so unable to do anything, not function at all.
I am lost inside it. Numb and dead inside with nothing more to give.
Drained Fatigue. Exhaustion beyond all comprehension. Exacerbated paraesthesia or neuropathy. “Buzzing”. “Paraesthesia pain”. Severe internal temperature fluctuations, like when one has severe fever or flu. Bad Palpitations. Severe Nausea. Blackouts. Inability to wake up.
Emotional fear. Scattered mind and thoughts. Inability to comprehend even basic things. Even less capability to remember things. No focus at all. Unable to do just about anything. Left with vacantly watching rubbish on TV because can’t focus. High Distress. Depression. Severe Hyper-Anxiety. Terrified – of everything. Overwhelmed. Barely able to move. Unable to function.
All I do are the basics. Less than the basics. And yet this is still what I have to live with – that and so much more. It doesn’t seem to matter that I try and do as little as possible… I still end up feeling so awful, so drained, in pain. If I try and do more than nothing, then this… thing… punishes me relentlessly, by making everything so much worse.
This makes it so completely horrible, unmanageable, un-livable. I am unable to do anything I want to, and that’s not because I’m in so much pain or can’t walk. It’s because I am so very too exhausted to do anything. There are things that can be done to control pain, Fibro… well, to a certain extent, anyway… but there seems to be nothing to combat inexplicable and extreme exhaustion that’s so bad it makes you pass out. Might not be too surprising that coffee is barely of any use whatsoever, either. So there’s nothing at all to combat it. You really do just “have to take it”. Without a single antidote to be had to help at all.
Sleep does nothing. “Rest” does nothing. How can you even “rest” when everything all around you confuses and terrifies you? When you’re so anxious, so distorted, so “zoned out”, so unable to function whatsoever… how can you really “rest”? It’s like I’ve got a broken health bar… or one from Dragon Age: Inquisition… It just doesn’t regenerate at all. And I’ve got no potions to bring it back either.
Taking me out of the game, for as long as its there. Or maybe, quite possibly, for good.
I find I have a lot to learn about my conditions. Most of all, it seems there is a lot to be learned about how to live with having Asperger Syndrome in a world and society made up of mostly normal people… or “neurotypicals“.
I have already found that this thing called a “Sensory Diet“, and whilst sounding incredibly odd, it is based on sound facts and works wonders in understanding things, the world, yourself, stresses, etc., so much better. It turns out that in my life before this, I used to do quite a lot of this intuitively. But after…? Well… It is after we have a problem with.
I recently read this blog regarding autism and fatigue. The story of the writer, her experiences, her thoughts – all of it – almost entirely mirrors my own experiences at the same age… apart from one thing. I had no idea I was an “Aspie“. In the 30 years I existed before all this happened – before “all hell broke loose” (as I feel it did) – I didn’t know what was “wrong” with me. But I did find out things that helped. As it turns out, in posh clinical terms, it was called a “Sensory Diet”. Who knew…? I certainly didn’t – and even then, I only just found out about this thing now, and it’s been nearly 2 years since I was diagnosed.
I’d say someone should have mentioned it… but I saw absolutely no one about this, ever – so it’s not like there was anyone there to point these things out. I’ve had to find all these things out on my own, so it’s rather a slow process.
Anyway… the point of this that before I was quite intuitively working things out that were helping me cope with living on a planet that was entirely alien to me. Now Afterwards none of these actually exist – and for one simple reason. I – very effectively and almost literally – have no memory. Or more accurately, access to my memory. Henceforth, I do not remember whatsoever what I used to do or how I used to do it, unless something somehow prompts these faded and shadowed flashbacks of my old existence. The pills I take seem to have seen to most of it, the rest comes from shutdown due to excessive anxiety and fight-or-flight responses.
So whatever it was I used to do, I not only do I have no idea of them, but I am so terrified of this other new planet I have somehow landed on – one that is once again a complete stranger to me – I cannot make up new ones.
Before, I spent years and years reading, watching, learning, absorbing how the “normal” (sorry – “neurotypical”) world worked. I figured out patterns, behaviours, distinct ways of “getting on”, for “passing”, basically for copying and mimicking them. Understanding them. Well, as much as I could, anyway. I never truly will, but I get a lot on an academic, intellectual level. Or, at least, I used to. Not so much anymore.
But now it seems all that information is lost – perhaps not forever; perhaps it’s behind new Admin access or Firewalls – and whatever the reason, it’s not available.
My life is segmented forever into Before and After, now. No matter what happens, nothing will be the same as it was again… and this experience will scar me, affect me, haunt me, and drive me forever more.
Before – even before I knew what I was, what planet I was from (“Planet A“… * cheeky grin *), I used to manage to do things that helped me just get on. Cope with the weird. And life, people, circumstances and their behaviour was very weird. After, there is nothing left in that little memory cupboard for me to recapture it.
So, circling, returning to the point… The blog under discussion is about Asperger’s and fatigue. It’s not something we think of – it probably comes naturally to us to just process the crap out of things without even cognitively assessing just what it does to us as well as for us.
It doesn’t just help us, it exhausts us. This is because we most certainly – and quite effectively – work the world out with just our minds, because on this planet we really have no instincts. We ergo learn different coping mechanisms in dealing with it all, in trying to understand and blend in. I find this existence an exhaustive roller-coaster hamster wheel of balancing acts. Our brains go hell-for-leather and nineteen-to-the-dozen, always at excruciatingly high processing speeds and levels, trying to cope with the world around us whilst living in it. It is why we tend to do exceptionally well at thing that involve precision and detail – we see things in a moment that people sometimes don’t see at all, and immediately catch onto the things that are out of place. Our processing power, as well as our own natural instincts (which seem to be coronary to this world), enable us to do this without much bother.
In fact, writing this quite reminds me of probably being likened to a high-functioning super-quantum real AI trying to get on in the world (and it is in this fashion that enables me to identify with the character of EDI in BioWare’s immensely successful and award-winning Mass Effect games, more than any other character in most games I have played – with her I actually do understand what empathy really could be…). Your entire existence is in your brain, your processor and memory cores. Everyone else’s is based on instinct (but then this is their native planet, so what else is there to expect…).
To then have all this computing power, this memory core, this enormous mass storage of space filled with copious amounts of data, all wiped clean – or at least transferred out to a storage partition you have been locked out of… Starting again is not easy. Without the things I already knew before, I have to work all the harder to understand this world again. From scratch.
This is something I’ve not had to do since I was an infant. Thus is it any wonder my ability to cope has regressed to that of a toddler?
This time, at least, I am hoping to learn the right things, and this time I will also know why. I will at least benefit from the wisdom of this day and age, 30 years and more after the last time I was here.
Too Tired To Even Be Tired…
Currently, the word “fatigue” doesn’t even begin to describe what I am feeling as a consequence of this. And it’s all the more complicated because I am no longer a toddler now, and I am supposed to be some kind of adult. The fatigue that is mentioned in this blog hit home – in particular all the more now because I have to make much more calculations now to try and work something out from scratch, as I no longer have the data and programming available to work from. Within my pain-fried brain, this is usually far, far too much to ask of it, and ergo I have ended up crashing constantly.
I am overly hyper-sensitive to everything, which also causes absolute exhaustion, as does interaction with others (even the closest people to me, let alone others – and don’t ask me to talk to strangers… Just… don’t.). The pain has maxed out my sensory overload quota, so there’s really none left for anything else. Add the hyper-anxiety from it, which is also fed by the exhaustion itself too, it all gets far too much too quickly. Oh, and did I mention I can’t sleep, and am generally too scared to anyway…?
So, you see, I’m just a walking conundrum in a mess, where it all makes sense to me but no one else. My planet is very different from your planet, and here I’m not only weird, but dysfunctional. And being “naturally” dysfunctional (by your standards, not mine – to me it all makes perfect sense) is exhausting, because I have to override everything that is natural to me to get along with you. And dear lord, it is very, very exhausting.
I honestly do not know how to deal with all this. Some of that “Sensory Diet” thing is helping somewhat – it’s helping to give me a sense of myself, of grounding me, of giving me a physical form I am aware of (and not just a disjointed ball of pain), which then gives me parameters to work from. Otherwise I am frankly entirely lost. And the pain magnifies everything and makes things worse. I was starting to get on quite all right before that came along.
What I do know is that I am most of the time simply too exhausted to think or to even care. And when we you see the world through thinking alone… Well, then the world no longer has any sense or meaning, and it becomes truly terrifying. I have to do what feels like a thousand times more processing than before (and I’m older now, which doesn’t help), and it really is just all too, too much. And yet, I still have to try… Only I’m just frankly so sick and tired of having to. Can’t someone come into my world and speak my language and work with my instincts for a change?
The fact is that right now it’s too hard to do what I used to do before – calculate the crap out of everything and squirrel it all away for my own version of data mining, data collating, and data analysis. My brain just does not – cannot – work the same now. The meds I take makes it almost impossible to remember things, to put down new memories, new behaviours to go by. It’s like it’s not only disabled auto-saving but also locked me out of changing the settings to it. I am entirely reliant on others to help me with this, and that is a very frustrating thing: I may have been told that this or that should be done under certain circumstances, but I won’t remember – so others must prompt me or explain again what is expected.
I am a child again. I wonder if this time, “growing up” in this day and age, that things will change. I think in many ways it has; I think in many ways I am allowed to see what it would have been like if I truly was a child now, or if this information had been available 30-odd years ago… and it is somewhat heartening. It’s disheartening in the fact that it wasn’t available, and I am in this situation now, after three decades of struggling.
Is it like a second chance? Who knows… I suppose only time will tell to see if all this was anywhere near worth it…
I’m beginning to wonder if I have two of the most annoyingly incompatible conditions possible… It turns out that apparently Fibromyalgia and Asperger Syndrome do not play well together… Or, perhaps depending on your viewpoint, they play together too well. All they seem to do is add to, and aggravate, each other’s symptoms – they have much of the same side effects and both get affected by much the same thing, and one usually will then set off the other. It’s complicated
This is not making my life any easier – and I think I can safely say that Fibro and AS are ridiculously incompatible to have at the same time if you actually want to do anything.
Fatigue is one of the worst – I get tired enough just by trying to be alive with Fibro (which my auto-correct constantly wants to change to “fibre”… and then leads to quite a different sentence when read back!)… but AS also makes certain things absolutely exhausting, namely all social situations (i.e. also just simply trying to be alive…).
Fatigue feels like it’s almost a condition in and of itself – it seems to have it’s own mind and behaviour, and it also needs to be acknowledged and treated itself – regardless of what is causing it. It feels like a mini-condition within a condition, and it causes enough problems all by itself, without even then taking into account the condition that’s causing it. After the pain itself, it’s the most difficult part of this to deal with.
It’s an unfortunate symptom of Fibro, since I get tired enough from things anyway, thanks to AS. A lot of things like going out, being outside, being with and around people (one or more others around me is very difficult to manage, and the more there are the harder it is), speaking to anyone (strangers, shopkeepers, receptionists, anyone on the phone, etc)… anything that effectively requires any outside and/or social interaction and communication… they all already exhaust me because they are so very difficult to manouvre. They are frightening and daunting, often overwhelming, and I usually find myself extremely tired after doing such things. Add to that the intense fatigue that comes with Fibro and I am now never anything but extremely exhausted and constantly drowsy.
It’s become rather worse since we temporarily added a couple of extra people to the household. Now there are four people and a dog in relatively small place (it’s not really built for sharers, more like a small, young family) for a few weeks, and it’s extremely difficult for me to manage. Juggling pain, social confusion, high anxiety, and a lack of experience for the right etiquette for this situation – including not really want to engage with so many people at once. I like them all, but it’s just too hard, too complicated, for me to handle. Just knowing they’re in the house is stressful enough, and because of all this, I am just so beyond exhausted I can’t even think.
The fact that can’t really sleep doesn’t help. As it turns out, Fibro screws with your sleep quality – and just to help, my AS causes enough constant anxiety to makes sleep barely more than a pipe-dream as it is. So now what little I do have is pretty useless.
Working in keeping them both in check, and working to lessen anything that causes symptoms – or at least strong symptoms – is the only thing I can do to try and manage. It’s not like anyone from the outside (NHS, social care, etc) is coming in to help me – the only treatment I’m getting for anything is possible hydrotherapy.
It feels like a gauntlet to be run. Another one. I’ve already been through one – one that lasted nearly 2 decades… so I think I can run this one too. It’s only been 2 years, so it’s hardly comparable. However, it’s not really too clever to have two such completely incompatible conditions that just aggravate each other, making them more intense than either on their own would ever be. It’s also hard going it alone, and without outside help, I’m not sure how well I’m going to do in the long-term… but at least it’s not something worse, or anything life-threatening or life-shortening. It’s life-changing, but that’s still something I can live with.
And I need to remember that.
Living with chronic pain is, to say the least, a right pain. It restricts what you can do, and in most cases you end up being reliant (at the very least) on strong painkillers to get through the most basic of tasks and the quietest of days – doing any more than that can require a huge amount of willpower and gritting of teeth, followed by pure exhaustion.
Personally, I am really tired of being in constant pain and having to treat my body like it’s made of bone China. There is barely anything that doesn’t hurt every second of every day, and even a slight pressure can cause a lot of pain which can border on agony if it’s already flared and sensitive. I’m tired of being always tired – from the effort of just living, I’m perpetually exhausted. My mind has to be continuously active in blocking out as much of the pain as is possible, and this drains me. I used to rely on painkillers until I became addicted to codeine – now I have mastered that, I try to stay away from them as much as possible and try to manage my pain by shutting it out of my mind, or just gritting my teeth and trying not to cry. Only when it becomes too much to bear do I end up turning back to the pills, and I control my consumption of them with an even firmer iron fist than I do the pain itself.
I must admit that I believe a life without it would not be my own – it would be unrecognisable as a life of mine, having dealt with this for most of my existence. I’ve had it for so long I would not recognise my life without it, and would take a lot of adjusting – not that I wouldn’t take that option in an instant if it were offered. I have incorporated it into my life and tried to work around it as much as possible, but this has been unfortunately to the detriment of other things – like fun activities. I loved yoga, horse-riding, walking – these are no longer a part of my life, except for a small amount of walking (and by “walking”, I mean long walks or treks in nice places, not walking to the shop…). My job is now working within IT and sitting at a desk – standing and walking for hours hasn’t been an option for several years, and I could never successfully do such jobs again.
In my darker moments I resent the hell out of this semi-prison I am in. I feel so restricted in so many areas of life, and I hate having to think twice before doing anything, and I have heartbroken hatred towards my body for keeping me confined in pain. When a light hit, or even a touch can leave me squealing and in tears, it drives home how much I hate what it puts me through. My bones, my back, my stomach, my legs, my shoulders, my head, my neck… There’s hardly an area that does not cause me endless pain day after day. Nothing but strong-ish painkillers can give me any relief – and even then it’s not enough to be pain-free… It just dulls it enough so I don’t want to cry from it. The real gem is that I can’t even take anti-inflammatory pills because thanks to a blood-clotting condition NSAIDs are out of the question.
In my more dramatic moments I feel cursed, angry and frustrated. The stress of having to cope with the unrelenting pain, as well as trying to focus on doing at least some daily tasks, and my job, plays havoc with my already disastrous and unstable mental health – which then also inflicts more exhaustion on my already-struggling body. This then causes more pain, as my body is made even more hyper-sensitive with tense muscles, tension headaches (or worse – full-blown migraines), and adrenaline hormones surging permanently through my bloodstream. To say that sometimes I really struggle to cope is an understatement.
Just a day, or a week, off would be lovely. To have a small amount of time that was pain (and painkiller) free would be a real treat. A restful night, followed by being able to get out of bed without at least wincing, and to be able to move around and do basic things without being reduced to frustrated tears or just plain not being able to move would be pretty awesome. It would be great to be able to sit at my desk without feeling horribly uncomfortable (instead of trying hard to concentrate on work whilst trying to ignore the pain shooting through abdomen, back, legs, and head), or play my beloved videogames without having to have giant cushions placed on the floor just so, to support my hips, back and legs (sitting any other way results in pure agony after just a few minutes).
Unfortunately, until real-life starts inventing real Fairy Godmothers with real Magic Wands, I am stuck with grimace-and-bare-it – and what will probably be a lifelong requirement for codeine consumption. Yesterday it was so bad, I bought Syndol – which has a tranquiliser that works as a muscle-relaxant. I had to drink coffee like it was going out of fashion to stay awake, but I was pretty pain-free (and rather out of it) for most of the day… Thank goodness nobody takes much notice at me, hiding behind my screens, at work!
Right now, at this moment, the pain is bad – the codeine has run out and my head is overwhelmed by the pain data flooding in from just about every part of my being, especially my back, hips and legs. It does make me want to cry (sorry to be all morose and all that…) – and I do try to cope by turning up the volume on my headphones (thank the lord in the rather insular world of IT world it’s a fairly normal practice to stuff music in your ears and concentrate on your work) and drowning out the “noise” that the horrible pain makes.
Eventually, I’ll give into it and pop another two pills – careful not to slip into dosing way above the recommended limit, like I used to. After the splurge of “celebrity” deaths following overdoing the painkiller addiction until you officially overdose, I have become very relieved that I have survived doing exactly the same thing myself, with no long-term damage done. It’s too easy to do – I know that as well as the next person doing it – so I am hyper-vigilant about it now.
Like everyone else in similar situations, it’s really just all about the bottom-line… You just want the pain to go away…