Tag Archives: crippling

TMI

| 9°C |

Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.

I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.

Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.

I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.

I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.

Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end

Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming MeDestructive, Harmful, Destroying.

I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy

The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.

Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.

These Feels are… Heavy… And I don’t like them. I only want them to go away.

#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration

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All Pain, No Gain?

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 Nobody_Will_Hit_As_Hard_As_Lifeget 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…?

Not A Challenge


Ripping The Scars That Bleed

When people say “It won’t be as bad as you think“… I wonder if they ever imagine that it won’t be because it’s simply so much worse than anyone can imagine?

That tribunal was a nightmare. One that just would never seem to end. It has now… but it still haunts me, days later. I felt… molested. They tore into every part of me without emotion, care, or regard for my wellbeing. I felt presented to them so they could eye me, judge me, penetrate my very soul.

It was just horrible. Intolerable. It felt they tore inside my soul and ripped out everything inside. Everything I never wanted to think about again. Everything I had spent a long time trying to forget. Everything that I couldn’t think of again if I wanted to continue to survive.

They wanted to know things I didn’t want to remember, to think about, analyse… I’d already done that so many times in the past 20 months since this started, I did not want to do it again. I had no therapist to get through it, I had no therapist to return to. I had no one to help me the first time around, and no one there to help me deal with the memories. I felt like I had finally got to a place where I could forget the details and accept where I was (for now, until I get better). Now, they wanted to rip those scars open and have me bleed over their pristine giant table.

They dredged the dark waters and poured out all monsters back into my soul. Coldheartedly. Devoid of emotion. Without wanting my own to insult theirs.

They looked into every weakness, every symptom, every difficulty, every secret, every memory of every moment of pain. I was laid bare in every way in front of them. I felt I had been completely ripped apart and they were judging the pieces they had taken, like butchers looking at what quality meat they had ripped from a carcass. Except I wasn’t dead… but right then, I wished I was.

I tried not to cry. I couldn’t look up, or look at them. The tears kept wanting to come. I was tired. Frightened. Speaking and thinking of upsetting things. All I could feel was their eyes on me, their disapproval of such a thing. I tried not to cry. I think I managed it. But I think now I wish I had, then I probably wouldn’t have had a horrible meltdown later.

 

Humiliating. Traumatising. Demeaning.

Having to think about every little detail whilst your fuzzy mind stumbles through memories better forgotten.

Having to think about every little detail that has traumatised your mind for 18 months. Every detail that you have tried hard to forget, so that horror no longer scars your life, your emotions or your mind.

I had a meltdown. It wasn’t until later in the day, until I was home. I just wasn’t able to deal with it all anymore – it all just kept going round and round in my mind.

Because of the meds? Because of my memory problems? Because I was beyond exhausted? Because I was so beyond anxious even before the day even came and now it was over the hill and past the horizon of awful? Because of the memories it dredged up with the minutiae of details? Because of my “condition”? (I still can’t really say the “A” word….)

My guess? All of them. And more.

 

It was like being somewhere that combines the head teacher’s office and Simon Cowell’s X-Factor panel. Only far more traumatising, humiliating, demeaning, and terrifying. I’ve done the Simon Cowell thing, I’ve done all the audition-panel things. I’ve sung solo in front of 1200 and alongside others in front of over 1500. This was nothing like that.

There was a room. It was so white it was horrible, so bright with sharp fluorescent lights it made me feel sick. It was a large room with a large table in the centre. On the other side were three quite old, stern-looking women. One was a judge, one was a doctor, and one was some kind of disability specialist. They were frightening in their imposing energy… I just felt myself wilt in fear in front of them. I kept my head down. I tried to speak to them, but… there are no words. I just couldn’t do it.

I had my friend but no advocate. No one to truly help me. I was alone.

Understanding Pain

They kept on asking me different questions, bouncing around with them, so I couldn’t keep my thoughts straight. I would try and answer, then forget the question, just think what I was thinking about and move off on a tangent. They kept asking me about distances I could walk over a year ago – how should I know? When you can’t even remember the last question posed before that, how is it possible to remember something from so long ago? They asked how far, distances in years, or miles, or meters, or even length of houses… I could never work out distances and now I don’t even have spacial awareness to the point that I couldn’t reference the length of 20 houses, or 100. I don’t even remember where places are anymore, and I always have to ask my friend which way we’re going and how to anywhere, because I no longer remember.

 

Inane question after inane question on historical facts kept coming. I couldn’t understand why now wasn’t relevant, and the judge mentioned that they could only take facts up to January 2015 because of the date of the last assessment. I was already in this state by then, so it was hardly any different to now, but it also meant trying to think back to a year ago and more. They wanted specifics… and I could only talk in disjointed vague memories better left forgotten. I honestly had no idea what I was saying or talking about.

The doctor even asked me that age-old gem that always really riles me up: “So, what do you think is wrong with you?” What I really thought was wrong with me was the NHS being an unhelpful butt-dragging arsehole. What I told her was that I didn’t know anything because no one cared to look, test, check… I didn’t know what was wrong with me, because no one had told me. I hate it when doctors do that – it’s their job to tell you what’s wrong. That’s why they’re there. To do that. I didn’t go to medical school, or work in clinics, or get an MD behind my name. Are they being lazy, or just intolerably insulting by expecting that everyone is aDr Google hypochondriac that thinks everything awful is wrong with them? I know it would be entirely unthinkable if I went around asking a simple database user what they thought was wrong with the system backend when they couldn’t do something on it… they’d look at me silly. What would they know about the coding, the access logs, the system details? No, I wouldn’t ask. I would just go and find out from the “symptoms” given as to what was wrong with the database. Damn doctors should do the same, too.

 

I tried my best to answer all their questions, but I’m certain my answers were as confused and chaotic as my mind felt. The light was almost suffocating and drowning me, these women were firing questions at me, expecting answers I didn’t know how to give them.

BagPuss_BeanieToy

Bagpuss

I clung to the little BagPuss beanie toy in my hand. My mother had given it to me a long time back, because it was my favourite show as a child. It comforted me, helped me. I squeezed him so tight, I’m surprised I didn’t somehow break it. It was a tiny plushie thing that was small enough to fit in my hand, and I hid it in my bag. I didn’t want them to see yet one more weakness.

I was already in such astronomical pain – I could barely keep myself together, let alone my mind. The anxiety, the painful and nauseating cab ride over, the physical exertion and extreme pain endured when I tried to use their bathroom, behind a horrible heavy, large door… it all added up to my state of mind before I even walking into that awful white room of bright lights and people.

I had no idea what to expect. I was confused and in pain. No one sat with me and explained what was going to happen or what was expected of me. I just went into that big white room and was faced with all this. It was unfair. If I was there to give myself a chance to explain myself, they set me up to fail. They may have “wheelchair access” but they were not by any means disability-friendly. They weren’t caring towards people with neurological or mental health conditions that would leave them scared and confused.

Maybe they just expect and assume that “someone else” will take care of these people… but who are they? I certainly couldn’t find anyone to help me go there who knew what they were doing. I have no therapist or social worker, care or case worker, or any other professional. Charities have limited people and too many applicants for such assistance because the NHS or care teams don’t provide them. I had no one. And that wasn’t really fair. It was also too late before I thought of the NAS, and that perhaps could help with finding an advocate… waiting lists are always far too long. If a similar thing is presented again, I will call, though.

 

I have been through it, yet (ironically?) I still have no idea what was actually expected of me. I told the truth, and that’s all anyone can do – but the confusion, inability to focus, incoherence, fear… it all goes towards how you communicate with them. I told them I couldn’t really communicate well with them. They were aware of it. What I don’t know if they take it into consideration when they think about the case. About my story. The story I can’t tell unless they read my writing, which they have not. Will not. Weren’t going to.

Weather The StormI don’t know what the outcome will be. I don’t know how long it’s going to take. I don’t even know if they understood me, believed me, got it right. My friend tried to help, but they didn’t really give her much of an opportunity to. They refused to let her help me speak. They forced me to do it on my own, and I know I got it wrong. My friend really tried to mop up a few of the mistakes I made that came across incorrectly, but there was only so much she could remember, since they asked me questions for some time.

I was confused and perturbed by the manner they spoke to me and the way they organised themselves, their questions, the procedure they used, by the fact they made me speak for myself without my friend helping me. They did nothing to help me make my case… in fact they made certain it was more difficult.

Now it’s been a few days since, I’m more angry with them for doing what they did, what they put me through, how truly badly they made me feel – penetrated, probed, torn up… a victim. They should have been there for the truth… their methods undoubtedly made me unable to tell it. To tell them much of anything that was of any use. If they had been calmer instead of stern, explained the entire process at all, helped me understand and be calm, didn’t make me feel rushed, had read my writing instead of ignoring it, asking me to read it when I was too scared to… Instead, I babbled, confused and frightened under the bright light in the big white room that was imposing and giving me a migraine and a panic attack, unable to really say not even half of what I wanted to or should have.

They had no idea how to get the truth out of me. They didn’t get lies, but they must have had unnecessary information instead of what they wanted from me. They quite possibly wasted my time and theirs because it didn’t go the way it should have. A little more care and attention into taking individuality into account, and their work would probably be much easier. A shame they don’t understand such things, and you’re nothing but a ticket or docket number to them.

 

I’m left daunted by it, and a little haunted. I don’t think either answer will really dilute the experience enough to forget it. It’s left its mark, and it shouldn’t be like that. The system should support everyone who truly needs it and squeeze out those who don’t. Right now, it’s the other way around. Those who are not ill and clear-headed and manipulative are able to con and convince the assessors and panel into believing them. Others, like me, can find it difficult to communicate properly for various reasons (not to mention that pain and exhaustion from illness doesn’t help in and of themselves) and not do a very good job of making our case.

Whatever the result, I did do my best. Unfortunately, it may not have been enough. But I did my best.

 


Being Ill Is My ID Card

It seems I’ve been nothing but ill my whole life. It has been there for as long as I can remember in some way. My first one was mental health – neurosis, severe anxiety, panic attacks, then severe depression and all the other things that came along with it. Along with those things, a bunch of other stuff came along. I feel like I’ve never been anything else – so much so I feel like this is all I am. This is all I have. This is my existence and there’s nothing else to me. Nothing positive, nothing likeable, nothing productive. Just nothing.

Just a parasite on people, society, family, friends and colleagues.

A Raggydoll. A Raggydoll with no other purpose than to be a Raggydoll.

*
Being A Raggydoll…

I feel like I have no other personality traits but illness. From when I was a child I’ve struggled – with mental health, physical issues, health problems… I’ve always been the “problem” child. “Problem” person. Always sick, always upset, always in pain… always something. I feel as I have nothing else to offer – that there isn’t anything else to me. I am simply a burden and feel guilty of being around anyone – family, friends, work, anyone. A parasite that drains resources without being able to give back – or what little I can give back is just nothing compared to what other people give. What do I have to offer – what could I possibly have to to offer?

GrumpyBear

Basic things are difficult – making food or even a cup of tea feels like a hurdle to climb over. Sitting, standing, walking, even lying down, are all difficult. I can’t even offer being a nice person… I seem to be just permanently grumpy and snappy. I feel awful for it, and seem to have no idea how to get over it. I wish I could be at least nice. I don’t know why that part of me is broken – but living with this just makes me feel irritable, miserable, lonely, and so tired, I just can’t seem to manage to be consistently nice. This seems to render me a very unpleasant person. One I do not really recognise. One that I am very sorry that I am.

It’s an isolating existence. It’s also a catch-22 – I don’t really want to be a burden to people and try to keep my distance, but then I feel lonely and isolated and depressed, and feel even more of a burden, and the whole circle thing starts again. I have nothing to offer people, and feel bad for asking for anything. Even help or support. It’s keeping me from work, isolating me even more. I had to accept my boss closing my contract because I couldn’t do the work to the standard required – and as a contractor they have no obligation to me, and in fairness gave more to me than they were obliged to before then. So I also lost my job because of it. You can’t be a data quality analyst, working with important data that needs to be completely correct, when you’re exhausted, in pain, unable to concentrate, and doped up with strong painkillers with side-effects including vertigo, nausea, and disorientation. I have never been able to sleep, but with the pain it’s even worse. Or I take the pills and I have nightmares from them. Either way, I am exhausted every day – and added to lack of sleep is the fact that simple things are difficult and take a lot of effort.

It’s like there’s nothing else to me than this. That this is my identity, and I have no other. I have even had a job offer revoked (several years ago) because they thought I might be too ill to undertake it. It makes me sad when I hear about the ill, sick, and disabled being told by government contractors that they are “fit to work”. You know who disagrees with that statement? The employers. I’ve just been asked to leave a job because I cannot do it, because I’m too sick to work right now. They think I’m no longer fit to work. It’s hardly surprising… I can barely walk, I am three-sheets-to-the-wind because of painkillers I have to take to simply manage very basic things, and I can’t focus on anything. I can barely go anywhere alone, when I walk my legs become numb, when I sit my back is in agony and my legs become numb, and I cannot stand still for longer than a few seconds before my legs start going numb and my back is killing me. I am also mildly depressed and just feel miserable and vulnerable all the time. No employer is going to want to come anywhere near me. People are worse off than me health-wise, and like me they still would like to work, but can’t. Employers aren’t catching up with this way of thinking – they want perfect people. They don’t want Raggydolls.

This is how I am seen – how I will be seen. It’s the ID card I feel I am wearing around my neck. It makes me want to burrow into a hole and stay there. Just hide. Put my physical difficulties with my mental health ones, and I just feel like one giant ball of pointlessness. A failure at being a human, because I’m not perfect. We don’t exactly live in a world, or society, that likes weakness or anything that’s not perfect. London isn’t kind to people who are not healthy and perfect. It hardly has many options in any area for people who have difficulties. It is prejudiced. People who aren’t fully mobile and in full health are incompatible with it. It’s probably worse when people don’t look it. So people assume there isn’t really anything wrong – as if they know. As if they know what’s going on inside your body. Chronic pain, mental health, mobility issues that don’t require a wheelchair – they’re all invisible disabilities… Meaning they stop you from doing stuff. Or rather, stop you from doing things in the way other people think you should, specifically in the way they normally do them.

  * 
My ID Card?

Because of all these things, it leaves me feeling like this is the only way I can see myself. That it’s the only constant thing in my life, the thing that defines me. Is it? Logic says no. Emotion says yes. I fear it’s the only way people see me, hence feeling I have nothing else to offer because they just won’t see anything else.

I would like to believe that if I had a shining personality, this would be the only thing that would be seen, but I don’t think I have one of those. I am a quiet, introverted geek with mental health issues and problems connecting with people or feeling anything good about myself. I don’t think there’s much of a chance of having much of a personality beyond that.

I was told once that I should stop being afraid of what people think of me and just be myself – that nothing was expected of me, except to just be me. It’s probably one of the kindest, most reassuring things I’ve ever been told. This person knows me probably better than anyone (except my mother, that is…!), and it’s something I’ve been thinking about in the last few days since it was said. It may have even been said to me before, but it has never penetrated my head before in the same way if it has. The thing is, I just don’t really quite know what being myself actually is. Well, I think I do know… but I don’t know. Not consciously. I know fear of everything I’ve just written masks anything I might know inside. Fear that there really isn’t anything else to me. That being ill is simply being myself, that that’s all I am.

I would like to think it’s only part of me. That somehow I can compartmentalise it into just being a small part of my life – a fact, but just a gliding one – one that just passes over my head. Like being short. I barely scrape 5ft on a prayer, and it does stop me from doing things like reaching stuff in a supermarket, or even in my own home, and it means I cannot wear about 90% of clothes out there as all women’s clothes are made for people over 5ft 6, and the rest is all for those over 5ft tall – even the petite section – no matter what they claim. But I do not think about it day and night, I do not concern myself over it, and I’ve adapted to it. Sure, it pisses me off sometimes, but only sometimes.

This is how I should see my limitations with health. Physical and mental. In fairness, I have adapted and accepted my mental health issues – over 15 years of therapy and dealing with it will do that for you. However, in those sessions, it was only my mental health that was dealt with. I was never taught how to come to terms with being in constant pain. In fairness, the extreme chronic pain has become worse in the last 6-10 months, with issues leading up to it becoming this bad. It wasn’t ever quite this bad before, though. Things have gone from awful to impossible in the last 3 months, and I feel like I’ve gone out of the frying pan and into the fire. A fire that hurts like hell, leaving me wondering whether this is all I am.

I am hoping that one day (and one day soon, if I’m to stay on the right side of a nervous breakdown) this is how I will see this thing I am going through. It’s lonely, isolating, and difficult – but I still need to get through it in one piece, so I hope that I will be able to accept it as a part of me, but not all of me. It just needs to be a small fact of my life that is less consequential than being my entire identity.

Perhaps one day I will be able to. But I just don’t think that it’s going to be today…

Carry Me


Illness More Than Pain

ILLNESS MORE THAN PAIN

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

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

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

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

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

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

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

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

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

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

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

No matter how impossible the battle or war may seem.


A Chrysalis To Butterfly…?

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

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

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

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

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

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

 

 

Not A Challenge


Bring Me Home

Still living in a world without you…

 

The darkness still sits inside me. I think I’m over it… I thought I was over it. But it’s like the ghosts – the demons – still live inside me, and I don’t know why. It’s over – it’s been over for such a long time. So why am I still afraid?

The pain still feels like it’s tearing through me – but it’s been more than a decade since the knives sliced through my heart. I still feel like I’m there, feeling every stab and tear, feeling every word and tormenting ache. I feel like I never moved on.

Ten years since I left the pain; nearly thirty years since it started. So why does it still haunt me so? What is my exorcism to be, so I can finally leave it behind?

I know… It’s my life – it’s real, it’s true, it’s mine. I cannot run away from it. I don’t want to – not really. I want to learn from it, mature from it, be a better person for it. Instead I am burdened and tormented by it. But where it should be left is in the past. It has no place in the present. It has no place in my heart. The only place it has is in my history – and it’s been and gone and done with.

You’d think I’d be simply relieved it’s been and gone and done with. So why aren’t I? Why am I hoarding this poisonous toxin of agony to the point where it’s killing me? The residue of my past sticks to me and it feels like there’s no getting rid of it. I seem to have a personality incompatible with getting through this – obsessive, intense, analytical, introverted and socially inept… It’s not a constructive character to be able to bounce away from being dragged through Hell and expected to function well afterwards – especially when functioning wasn’t an easy thing to do in the first place.

But in attempting to get away from these “character flaws” (as I’ve seen them) I’ve attempted (on so many occasions) to mask them – be something I’m not. Without accepting what I am, and attempting to realistically modify myself and grow appropriately – without hiding behind smokescreens of fake interests. The only identity I seem to know is “Victim/Survivor”… So I suppose on some level it’s no wonder I continue to “fake” personalities.

…So is it strange I feel like I fluctuate between being super-obsessive and bossy – actually, dementedly overbearing – and slinking into a bland nothing of no opinion whatsoever, trying to be nothing but agreeable? I can’t find the middle-ground, where I feel I’m allowed my personality, my opinion, but I’m also laid-back about things. I have little – no – social skills… I struggle with interaction and guess what the “right” thing to do is – and I can’t seem to learn. I don’t really know how to behave around people.

 

There’s a part of my brain that says, not worry about it – it’s just who I am and if I want to learn, then I need to just be comfortable with this fact and then I  have a platform to learn from. I suppose by that, I mean that if I’m not willing to accept who (or what) I am, then I can’t really ever learn to expand on what I am. Instead I keep pasting over faked attempts at pretending to be like other people. And I’m not. A fact that frightens some intense part of my brain. I was bulled from the first time I walked into Playgroup because I was socially inept, different, quiet, academic. The kids started first, then from Primary the teachers enjoyed joining in. Openly so. It was not a pleasant experience, and I think – I strongly suspect – this is the reason I am too scared to be myself. It’s a little overwhelming when people are responding so negatively to you for who you are.

I know on some fundamental level what I am – but I suspect an equal fundamental problem is that I’m afraid of it. No, I’m not horrible or evil. That’s not why… It’s because I’ve always known (I suppose the right word is “suspected”, because I’ve never had it actually confirmed) that the reason for my lifelong torment at the hands of others. I think I’ve just got to the point where I simply rely on reacting to what’s going on, hiding myself behind it.

I’m somewhat scared I don’t even have a personality anymore – not a core one. I worry I never even had one in the first place. I’m scattered everywhere, stretching myself over so many things. I’m not sure what I truly like, what I’m good at, what I can do – and what I shouldn’t do. I feel like a chameleon without a home – just changing all the time, with rapidly-changing background to sync to. I’m exhausted from it. I just want to be “me”. Whatever that is.

But I feel – somewhere – like I do have a home. That I could have a home. A real sense of my own self… But it’s hidden. Like the centre of a horribly complicated maze. Trapped within the ruins of my life; the ashes of what has been. The fires of Hell long burned out within me, but has left nothing but rubble and ruins. I stand in those ruins, looking around me, wondering what’s become of me – of my life. My existence. Am I building or rebuilding? Am I creating a whole new life or am I having to create one from scratch, because I was too young when the fires started burning to have started one in the first place?

 

At end of all this, I just want me… Myself. Something that’s really real and genuine within me. I feel like dropping down, calling up and begging to be set free from myself and my questions, my torments. I feel like calling out Please Bring Me Home To Myself. 

 

 

2013-01-13 22.01.23


The Painful Truth…

 

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…

 

 


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