Monthly Archives: June 2015

Not Living The Lie

Normal people live the lie. Then expect you do do it too. To make them feel better about… OK, I haven’t actually got that far. I actually have no idea why they do it.

It turns out I have Asperger’s, and I also can’t lie. Well, no, that’s not accurate… I can. Very well, if required. But I just don’t see the point. I can act too… I acted the role of a “non-Asperger’s” person for over 30 years. So well, in fact, that not one of the god-knows-how-many mental health professionals I’ve seen over the years picked it up. I was just seen as  someone with “mental health issues” because I was “depressed”, and “eccentric” because I’m a huge geek. I was “different”. I was left to it and avoided. I kept my head down and avoided them. It was symbiotic. Until I became ill with a chronic illness… Then Pandora’s Box was opened. I could no way in hell deal with both of them, and the immense pain I was in trumped the social confusion I dealt with every day. So I stopped acting.

It was only when I stopped acting, an I met a social worker who came to see me about the pain I was in (yes, I know… I asked for CBT to deal with the pain and they sent a social worker… I still don’t know why), that she pinpointed me like a laser and told me what was really going on with me. She was right… and apparently it wasn’t exactly a difficult diagnosis to make. The guy was back in a week with a confident yes, so it clearly wasn’t much of a head-scratcher. Reading the NAS website about it was like reading the most complete biography of myself I ever had. I felt like my soul had finally found a home… an answer… and I finally understood myself. It was a huge relief. It didn’t fix things, but it took the most enormous weight off my shoulders you can ever imagine.

But after the diagnosis… nothing. Nada. Zip. No help. At all. There’s none available – even the Autism Unit isn’t within my own NHS district – I only got to see them thanks to a new partnership between theirs and mine. But after diagnosis, it’s up to the local NHS to sort stuff out. Only they didn’t. Haven’t. And probably never will. So it’s just me now… trying to work out what to do and how best to help myself.

Because no one else will. I’m not just talking about the NHS, though… I’m talking about everyone and anyone. Ever.

 

Standing Alone….

Everyone always shouts at me for getting things “wrong”. They always have. Doesn’t matter how old you are, it always seems to be “wrong”. You are always “wrong”. Your behaviour. Your tone. Your way of speaking. Your lack of appropriate social interaction. Your hyper-sensitivity to everything. Your fear of all sorts of stuff. Absolutely Everything. Yet… no one tells you how to get it “right”. Right for them anyway. Because, you know, that’s all that matters. Them.

Who are they? Everyone else who isn’t like you. The world. People. Society. Everyone else. Everyone “normal”. Everyone who everything always seems to make sense to them. They know how to do all this stuff – what they like to call “normal”, like talk to people, go out, have proper conversations, interact, attend work parties, be outside – all as if it were, well, normal. But it’s not. Not to me. And not to some other people, people also like me. We’re a small group, a rare group. We’re almost always shoved to one side and ignored by the general population (if they know your “condition”), and most of us with the ability to do so, hide it. We fade and mimic. Pretend. Make our own lives stressful and miserable because we want to fit in. We don’t want anyone to know we’re like this, because the repercussions are pretty bad.

So… You do everything for them. Toe the line by their rules, which they don’t teach you. You figure it out, maybe, by being told off enough times about being “wrong” so many times you cry and watch them do it. You try and do everything they do, because everything is about them. It’s about how they want things done. How they talk to each other. How they lie, because they somehow think that’s right… when all it is, is stupid. Pointless. Pathetic. Doesn’t get the job done – just creates disharmony and complications because then they’re all tip-toeing around each other for the sake of “peace”. There’s no peace; they’re all too stressed out from living the lie. So why does everyone do it – and then expect you to do it too? It’s really damn well strange. And pathetic.

They also can’t be wrong. Ever. If you tell them they’re wrong, all hell breaks loose: They become defensive and stupid… you know, all the things you are not to do… heaven forbid. Yes, heaven forbid you of all people (“autistic”, “wrong”, “insane”, “attention-seeking”, “stupid” you) should tell them they’re wrong about anything. Common sense doesn’t seem to exist for them. When you point it out to them, they go barmy. They don’t want to know how to do it right. They hate it. Get defensive and just won’t ever take responsibility for it. Because you said it to them.

… Funny, though, how it’s OK for them to do it to you – over and over and over again. Then have the gall to never tell you how it’s done. Their response? To be appalled that you have the gall to express (read: lie) that you don’t know.

The fact you really, actually do not passes over their head like a home-run baseball. It’s like such a ridiculousness that they can’t even comprehend… but turn the tables on stuff you know to “obvious” and their backs go up and the prickles come out like a hyper-sensitive hedgehog.

They live their lives in hypocrisy and lies… I’m amazed “normal” people get anything done at all. Actually… Look at the world. Clearly, they don’t. 

When I did my work, I was obsessive, detail-focused, no mistakes (OK… I made one – once… A long time ago… Let’s not talk about that…). I got the job done. I was looking for perfection. No job was left half-baked, unfinished or without 200% care, attention and dedication (read: obsessive fixation). All my employers wanted me back, or didn’t want me to leave. When I first became chronically ill, the place I worked bent over backwards and every which way in between to help me manage, and when I really was no longer capable of giving at least 100% to my job, I told them I had to leave. I couldn’t bare the thought of the illness making me get something wrong – and until that point I had poured every effort I had into ensuring the illness didn’t get in the way of the quality of work I was doing. When I told them I was leaving, they really did not want me to, and I felt absolutely awful at having to do so – I loved that job, and I really liked being there. They took my “idiosyncrasies” and just left me to get on with it. That is how everyone should really be.

But that is not how most people are. Instead they’re always focusing on the things I find difficult, busy being horribly derogatory when I can’t do them. They then do all these strange things I just don’t understand, that are not really right, but asking questions about it and bringing it to their attention is “wrong”. Apparently they should not be held accountable for their actions, they are allowed to be defensive, and they constantly pretend to always be perfect. They’re not. Not even close. They’re chaotic, haphazard, disorganised, lying, posturing, play-acting, and being ridiculous. Too busy pretending to do stuff instead of just getting on with it. It makes my head ache from it all.

Their chaos, lies, posturing, strange rules all cause me to be confused and upset. But I’m supposed to be quiet about that, according to them. When I’m not (and I’m always not – I can’t lie and pretend it’s OK),  and turn it around at them, and when I then upset them in turn, they’re allowed to get all mad and I’m supposed to accept it’s all my fault. When they started it by being idiots and doing something wrong in the first place. I just do not get it.

 

Playing A Game You Just Can’t Win…

Seriously, it’s like being forced into playing a huge, frantic MOBA you’ve never even heard of before and expected to just get on with it.

… How many of you know are saying “What’s a MOBA?”. Yeh. Exactly. And now imagine you were forced to play against the highest competitors who yell and curse and say mean or derogatory things about you because you: Don’t know what a MOBA is; Have no idea how to play; You don’t know what the rules are; No one is willing to teach you anything; Then they all just ignore you… Oh, and you can’t leave. Ever.

Well… welcome to my world. That is just how it feels. You are thrown in, expected to know how to swim, and when you can’t, people are really mean – even seriously abusive – at you. And if they’re not doing that, they’re ignore you and they walk away. Leave you alone to deal with it however best you can. You struggle, you’re all alone, there’s no one to help you, it’s do or die. So you somehow frantically – through panic, despair, confusion, overwhelmed anxiety – work something out to save your own life.

Only then… they shout at you when your coping mechanisms are rubbish.

Without any frame of reference apart from what you can guess and work out… how the hell are you supposed to be successful without any kind of help??

Some people don’t get that far though. They just give up. Then no one can work why they took their own life. Why they were depressed. There’s lots of reasons for it, but this is one of them… no help, unable to cope, no one to show them what to do.

And so eventually you come to one very basic main conclusion: “Normal” people are idiots.

 

Trapped In This “Madness”…

The “madness” here isn’t the crazy-place you might assume my head is in. No… it means The World. That is was seems like madness to me.

Adults With AutistmAdult-diagnosed Autism/Aspergers… It’s not a good place to be. It’s also an ignored place to be. Nowadays, it’s all about the kids… and rightly so. I would rather die than allow a child to grow up and into an adult in the same way I did, facing the same things, the ignorance, the not knowing. However… There’s always a “However”… What about us? Those of us who struggled and didn’t know, and now want to reap the benefits of the last 30 years of learning about this thing? The children get it, so why can’t we?

There’s a whole bunch of NHS money being promised to helping kids with Autism/Asperger’s, but it feels like we’re being ignored and left behind. We’re already adults, with our own potential to meet. We already have skills and experience to offer. But how can we offer them if we’re not given the same treatment and opportunities afforded to the younger ones? It seems unfair we’re punished and penalised for the historical ignorance of the current NHS’s predecessors.

In the 1980s and 1990s, when I was growing up, no one knew what “Autism” really meant. “Asperger’s” didn’t even exist in their vocabulary. It was all about the stereotype of little boys playing with trains and screaming. It surely wasn’t about little girls with My Little Ponies who were also screaming… My mother knew things weren’t right. The health worker said I would “grow out of it”. I’m 34… I’m still waiting.

The best I’ve been offered in regards to help now is regular CBT (not Asperger’s-specific), and there’s a 12 month waiting list for that… which I was put on after I had already waited 9 months to be put on it. There’s a lot of meltdowns and confusion and panicking that’s going to be happening between now and then… How exactly am I supposed to deal with it? Oh yes, in the same way I haven’t been dealing with it since I was born. There’s also no interim-therapy or counselling available, either – there’s no money, so it’s an either-or situation. Are they waiting for us to all get so hopeless we end up being suicidal and going through with it, so it thins out the list a bit? I honestly feel like that’s what they’re hinting at. There’s no excuse to have to wait over 18 months to start therapy. Within 18 months it should be done and over with.

This is a lonely place to be. Mainly because everyone is busy being entirely negative towards you. Never patient, or accommodating, or sensible. I understand things even less now… my mind is caught up with the pain. Managing the pain. Ignoring the pain. It has no time to over-ride the other stuff that’s going on in there.

I imagine some of it is still to do with the fact I still can’t really accept it. I’m not happy about it. I still want to be just “normal”, like I always have done. Except I can’t… the only difference is now I  know why.

I love the fact people think you use it as an excuse… maybe because they’re always living those constant lies and think everyone is like that. Always trying to lie and cop-out of things. From the moment I’ve got out of bed I have worked my ass off until I’m exhausted – dealing with people, going outside, talking to people, doing my job, going on public transport, being in an office full of other people, walking through crowds, pretending to be “normal” and playing by their stupid little society rules… Everything that I hate. That terrifies me. That completely freaks me out until I can’t think. How many of those “normal” people. who assume everyone cops out of things, do that too? I’ll bet not too many. They’re probably the ones who do always lie and cop out of things. I didn’t even know what all this stuff they keep accusing me even was or meant until they started accusing me of it and I learnt. Funny that. But I still do not do it.

I learnt ways fending for myself. Of coping the best I can. People accuse me of “manipulation”, of “anger”, of “seething”, and “insanity”. Horrible words. Words that hurt. Hurt because they’re not true. I like the truth. You can deal with the truth. What I can’t deal with – or abide – are lies. Inaccurate information. Deliberate disinformation. Things that are not what they seem. Pointless hypocrisy, ridiculous lies, mind-numbing posturing… why even bother? How do people even live? I have no time for such things, so do they? No wonder this world is in a dumbfounding chaotic mess. They’re all to busy playing this game to get some proper stuff done. It’s hard not to be really, really pissed off about it, really.

But then there’s that catch where they don’t like you pointing things out that they do “wrong”…

And the wheel of hypocrisy spins all over again.

 

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Keep Hope & Carry On

Suicide ideology must be quite common with people with chronic illness, maybe more so with chronic pain… I know I find I think about it much more now than before I started this… “journey”. I’ve not thought about it this much since I was existing in desperately horrific times as a teenager. The only difference is that this time I don’t try and actually go through with it.

I suppose it just seems like a logical conclusion – extremely difficult living conditions, pain, the inability to do anything useful, frustration at being seen as a “burden on society” – not to mention family and friends… It’s entirely logical to believe there is no reason for continuing your meagre and seemingly-pointless existence.

I have not felt so utterly shamed and pointless since I was a child. I feel that I carry the burden of the fact that I am a burden. I find living difficult and painful. I am difficult to live with, difficult to help, difficult to experience. Everyone feels pity for the pain and lack of quality-of-life I have. Even I do sometimes – although when I feel self-pitying, that’s ironically when I don’t really feel suicidal. Just guilty.

 

Why Really Bother?

Sometimes I think about why I am even alive. I don’t do anything – I can’t work, I can’t really walk, I can’t take the dog out (on my own), I can’t dress myself properly, take a shower, or brush my hair alone, I can’t sing anymore (my passion… former passion), I can’t make food on my own (unless you count sandwiches), and I can’t think straight anymore or remember anything thanks to meds and/or “Fibre Fog” (if that even really exists…). I therefore can’t contribute to society, can’t earn my own money, and basically, rather pointless as a human being.

Ergo, would it not make more sense to just not exist?

As I am routinely told, life is not logical. Apparently, other things factor in, and things like logically not being here isn’t really an option for a human person. Let’s face it  – if I was a horse or a dog I would have been euthanised long ago. But I’m a human, so other rules apply. Regardless, I’m not entirely convinced that after some adjustment, others would not feel relieved and better off if I was no longer here. I would no longer burden them; their lives would be easier. I find it odd that it is “inhumane” to let an animal suffer in pain, but it is perfectly acceptable to leave a human being living in pain and call euthanasia “murder”. How are we more empathetic towards animals than humans?

The other side is that if we do want people to live in pain and with illness, why aren’t the services geared towards this? Why do we still marginalise the chronically ill and disabled from society? How is it that for the most vulnerable people who find even basic things the most difficult are forced to jump hoop after hoop to get the financial support and healthcare (inc. metal health care) they so desperately require? Why is it they have to prove their innocence in not fraudulently claiming to be ill – why not focus on obtaining evidence to find the guilty? Why is that they are punished and penalised for their afflictions rather than gently and empathetically taken care of? Why are they at the forefront for budget cuts, instead of over-inflated minister salaries and their tax-exemptions?

We are left, ignored, in the middle of the debate on who matters and why. They say human lives matter, but then we are ignored. Right now, it feels we are – after over 100 years – returning to the Victorian society we seem to have spend the last century running away from without looking back. Until now. Now it seems that society has decided it was actually some kind of golden-age of Britain. Only it wasn’t. And it’s no golden-age now.

 

Living In Another World

This is what needs to be changed for suicide ideology, or suicide itself, to be challenged and – hopefully – prevented. We need to feel that we are worth it. That we are wanted. That we can somehow be useful. That we are not a burden to everyone. That we matter.

The idea that we should be marginalised, penalised, treated badly, and treated without care or empathy. No one with compassion would do to an animal in pain or ill what they often do to people who are in pain and ill. I have personally been treated with anger, contempt, frustration, ignorance, harshness… Compassion has been quite low on the list at times.

I have a wheelchair and I can barely go anywhere in it. There aren’t a lot of places you can go in one, even now. At a branch of a huge retail empire just off Fleet Street I could not get in because of a step of about 10 inches thanks to it being on a hill. There was no option to call for help or a ramp. I had to sit outside like a bad puppy and wait for my mother to go in and get what she required. I expected better from these people. Even things like the quality of pavements for wheelchairs isn’t taken under consideration. Particularly with the streets where I live, I can’t be taken around without extreme caution, and I still experience extreme pain. The pavements aren’t flat and are too narrow, tree roots leave hugely-raised bumps of several inches and they’re not passable without trying to get over them. Once I came across one that was so bad I literally could not pass over it and the pavement was to narrow to go around it. The curbside was several inches from the road, so I couldn’t go down there to avoid it, so I was forced to turn back and find another way down that road. In this day and age, such things shouldn’t even be an issue. Because of things like this, I don’t ever really leave the house.

These are a few points of a thousand I could list.

I wonder why I feel like I don’t matter anymore…?

In my previous life, where I could walk and manage my mental health conditions, I wasn’t so marginalised. When you can walk, you take a lot of things for granted. When you can’t, so much is taken away from you, especially if pain is the reason for it. I can’t even push myself around in my chair, and for this and a couple of other reasons, I’m entirely dependent on other people to get out and go somewhere. I miss having that choice. I miss the fact that I seemed to matter. When I earned my own money, that I went to work, that I did my own shopping, that I could get around on my own (certain circumstances allowing), I took it for granted that I could.

Now I can’t. Now I don’t matter anymore.

Now I live in a different world, with different rules and different reactions. It’s been a stunning experience – I’ve been floored by just how terrible it is to try and get around, to not be able to go out and walk about on your own, to go into shops, cafes, or restaurants that you like. It should not be this difficult. Yet… it is.

 

My Own Light of “Hope”

I have Aspergers. That apparently seems to mean that I don’t see things in the way that others do. I honestly find it difficult to logically work out why my existence should continue to… well, continue. Since I can’t do anything, I serve no purpose. I just mainly sit and barely manage to exist. I cause “trouble”. I’m in constant severe pain. Precisely why would anyone want to persevere with such an existence?

I can’t really get onboard with the whole “I can’t go because [whoever] would miss me”… well, except the dog. I have an attachment to about 5 people, but I’m pretty sure each one would get on better without the burden that  I am. People will not keep me here, or prevent me from going through with anything.

My “raison d’être“, as it were, is simple – and no doubt to others, completely ridiculous. But at least I have one, and it’s mine. There’s another one too – curiosity. I suppose others might want to class it as “hope”: I want to see how it all pans out. I need to see what’s going to happen next. I can’t really come this far into what I class as Volume 3 of my life’s troubles and not see how it’s going to go. So it keeps me going – I want to see the full story, no matter what it is.

This world has things that I haven’t experienced yet. I haven’t played through my favourite games, I haven’t seen all the TV shows that I love, I haven’t mastered SQL or Linux or learned what Python programming really is all about, and I haven’t built my super gaming rig yet. I might not look to what other people would deem “normal”, but I look forward to the things that matter to me. As long as I feel this way, I will be able to override the feeling that I shouldn’t exist anymore.

But I admit… I would not need to fight so much against these feelings if this world, this society, was more amenable and welcoming to people with chronic illness and debilitating conditions. They have enough to manage with them without having to deal with being treated with prejudice by people and society. I have many problems, and nothing here is compatible to them, and they are not compatible with this world. If it were not so, I would feel more welcome and not utterly ostracised and marginalised, and I would feel that I had a place somewhere in this world, even if it was some little space in a comfortable little corner.

I imagine that kind of change would positively affect a lot of people who find it hard to live in this world.

 


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