Unity Discord

Different realities

In the game I am fairly able, fluid and capable. There are some issues – but mainly I’d say I present as a well-functioning person.

In reality…. Well to be honest, reality would take me years to convey.

But how about we try a little experiment?

Make yourself a drink to sit down with. Before you sit down though, switch on the vacuum cleaner in the same room you are sitting in. The tv needs to be turned onto a channel you don’t like, with a programme you hate. It needs to be loud enough to clearly hear it over the noise of the vacuum cleaner. Switch on some music somewhere too, that also needs to be clearly audible. Turn the lights up full and add some more if you can.

Ideally, have a friend or loved one come into the room and speak to you at ten minute intervals.

Place a heavy blanket or some towels on yourself, and wear clothing that is uncomfortable. Wear some gloves or some shoes you don’t like and a tight hat.

Do as much as you possibly can to make the environment as distressing and terrible as you can, in a non-harmful way to your safety and well-being.

Also, ensure no items are anywhere in reach apart from that drink.

Now…. Get yourself seated uncomfortably with your drink…

For the next hour you cannot move your body at all – without conscious attention and thought. You need to pay attention to everything constantly.

You cannot have a conversation with someone. No picking up a phone or putting on a movie.

It’s just you now, stuck here and nobody is gonna come help you.

Your clothes and the blankets weigh heavy and they hurt, the noises in the room assault you. All sound is now painful and aggravating and you feel tense and in pain.

The light is hurting your eyes, it bounces from some surfaces and creates shadows on others. This dances on the edges of your perception like special effects in a horror movie.

You are hungry, uncomfortable and in pain.

You can’t move.

There is no solve to this. You have to stay absolutely still, unless you focus completely on moving that one tiny bit of your body. And when you do move it, you are still not comfortable because of the sensation of everything else.

It’s been a couple of minutes now…. You see an item across the room you might like to interact with. Something to distract from this. A book or a game or the tv remote. You cannot reach it and you cannot move. Because for now you don’t know how to do that – and you also don’t know how to interact with that object.

You spend some time looking at it….

The understanding of other things is still working normally in your mind. You’re aware this is boring or frustrating and the sounds in the room are aggravating.

Something in your body hurts, but you cannot identify it at present. The sensation of everything else collides in your perception.

It’s been a few minutes and vaguely you think “I should have used the toilet before I started this”.

Your mind starts looking for a way out.

There isn’t one.

55 minutes to go.

Now, the thing with this is, it isn’t a challenge to see if you can endure one hour of this. There is no success at the end of this hour. Part of this experiment is to understand that this is your life now.

Forever.

Nobody can come and comfort you, nobody is gonna come save you from this. Anything you do from now on there is gonna be a consequence.

You do not know that consequence.

You cannot escape or leave.

Ten minutes

Someone walks into the room and starts asking you things. The words play in your mind because they either cascade down like tumbling dice or they scroll across like a song lyric video – but you can only see three words at once.

You look blankly at the other person, it’s difficult to even hear them. They say some more things and then they exit the room.

You become aware they could have helped you but you didn’t ask. They were so focused on what they wanted, they didn’t notice your experience at all. You realise they will return and try to think of one thing, just one that might help.

You’re feeling anxious and stressed, it’s too hot and you need to change that because it’s making you feel unwell.

You spend the next five minutes selecting one thing to make this better. You can now change that one element – as long as it is something you can reach without moving your body much.

Remember, you are still stuck here and you cannot move anything freely, without a lot of focus and constant attention.

This right here is your life now.

Forever and ever…

Twenty minutes….. the person returns to the room. They’re clearly asking for something important. You still cannot hear them, and they get worried or angry or they’re laughing because they are excited and want to share something with you.

You cannot relate or connect with that, because you are focused on needing help – you try and explain how you feel, but they are unaware of the noises, the lights, the uncomfortable position your body is in, the pain or your needs.

They leave again – you just missed the chance of help.

At this point I genuinely think there is no need to continue this experiment. Because really the point is that that is just sitting for twenty minutes with the stuff you imagined, it would create discomfort and pain and be unpleasant.

The real leap of imagination is to now apply this to everything always. Imagine life like this permanently. You can walk, you can speak, you know how to do various things.

But that ability is impaired, unreliable, restricted by pain and disabilities, health conditions etc. you can’t wake by yourself, sleep by yourself, bathe by yourself.

You look normal.

People see you have done things and expect you to be able to always do them.

You cannot.

Many hours of the day now are spent trying to just survive through the basics.

Communication has little relief for you, people don’t understand your language.

Activities or interests are another series of gauntlets to run, and you cannot engage in anything without help.

It is infinite chaos, and you have the intelligence and awareness to understand exactly what you’re going through, yet not have the tools or ability to be able to make it ok.

Additionally there are voices in your mind, saying things constantly, and sometimes you forget or have no awareness of who you are.

Emotionally the impact of this is disturbing and disruptive perpetually.

And your mind also now has open access to full HD graphic videos – with surround sound to every single traumatic memory you have.

It also feels like you have dementia, because you are aware that you can do things – and yet you have no knowledge how to – even though you did something yesterday and you remember that.

It genuinely is exhausting….

…………………….

Additionally 👀 I’m agoraphobic, have an eating disorder (ARFID), IBS, neuropathic pain that restricts my hands functioning reliably, underactive thyroid and other deficiencies, a mood disorder and potentially a personality disorder too….. as well as the sensory processing problems and issues with balance and motor skills.

I can talk, think, walk, move and I understand or know how to do a lot of things. I just don’t have the options available all the time to be able to to that. It takes a lot of energy, focus and concentration to do almost everything.

The real annoyance is once in a while I get a “good day” and I can do something easily 😊 I enjoy those windows of time. But they also highlight what it might be like to live another life.

Not this life.

Trying to plan something is like playing the game, Kerplunk, or building houses of playing cards – one tiny thing happens then the whole structure falls apart.

As well as that my autistic profile includes ADHD and PDA.

Not to mention life experiences and personal experiences regarding my “self” or identity, that complicate everything also….

If you got this far, perhaps there is some understanding about why I enjoy the freedom in the game.

It’s like having a direct link to the me that exists outside of this body and physical experiences.

In the game I am free.

It makes me smile and laugh and cry and I share so many positive things with people there.

In the game I have a purpose and I am the leader of our group. I make the decisions for us all, I take care of us all as best I can. We work together and they look out for me too.

There are some real angels out there in the world as well – who genuinely have cared for me and helped me in situations with other people, where I have struggled.

People in the game have warned me not to live my life in the game. I understand them. But honestly, it’s not the game that’s addictive.

It’s the freedom.

All in my mind

Today I am tired, I have had too many days with my mind being randomly overactive during sleep time. Too many days with not enough quality sleep and not enough sleep.

I’m angry and not angry. I’m tetchy and good humoured. I’m focused and unfocused. I’m stressed.

Why?

Because I’m fixated and she’s not there 😂 right now I feel like her sole purpose in life is designed to create and maximise my suffering.

It’s working 👀

All executed perfectly, because she’s absolutely oblivious to most of it 👉😂👈

I swear, we are not the most ideal of friends for one another. We are so very different, in so many ways.

I just want to go to sleep 😱 she’s away 💀 she doesn’t read messages when she’s away. My sleep routine involves sending messages to her, WhatsApp stickers (mainly) and saying goodnight. It doesn’t work when the person ain’t reading or replying 🙈

I could write essays on this and the topic of why my neurodivergent mind and self is not ideal as a friend to hers. I’ve probably investigated every angle of it possible to consider.

Anyhow, this is why I’m increasingly losing the plot. I’m spending large chunks of time in the day drafting messages in my mind telling her “we really really should not be friends”. Convincing myself to find another way of sleeping peacefully. Telling myself that this ridiculous suffering in response to everything she does or doesn’t do, is really unnecessary.

I can’t help it… I fixate.

I just want to go to sleep, stay asleep, sleep soundly 😂🙏 that’s all, it’s so simple. I curl up in my mind like a little dragon and feel safe and loved. For whatever reason this random situation is a magic sleep solution.

I don’t want to let it go 👀

By the way, this process is mostly just me not talking – it’s just her message inbox that I open on my phone and ‘hide’ in, so I can stop doing things for a bit before I switch off my phone and lay down. And…. she doesn’t even know at the time because she’s at work!!! and what exactly I am hiding from is also unclear 👀😂

I’m autistic 😂 sometimes little patterns of routines become stuck… I’m tormented. I want to never speak to her again, and find a new way of sleeping!

By the way 👀🙈😂 it isn’t as though she’s completely out of contact. She plays the same game, she’s in the discussion group, we have a group chat also, with other friends, and she shared holiday photos there to us all.

I grumbled about holidays, said thank you for the pretty pictures and that I accept them as a gift, then declared I had already ran away and was sulky 🙈 then I wrote a mini essay to myself about the “realisation that my stress is based on a total lack of understanding or insight into just about everything she does”, and I only wrote that so I could quiet myself and stop being annoying.

I am a child 😂😂😂

I just wanna sleep and it’s really hard work being “adult” and reasonable.

Also, I genuinely care and I don’t want to ruin her holiday, by complaining because my routine is changed for a week.

Also, the habit I have of being brutally honest can be an issue 😂 so the effort of not saying things, makes me implode until I explode.

Meanwhile, the consequence of this is I’m being more direct and assertive in some situations – and generally more unstable in nearly every other.

I just wanna sleep 🙏😂🙏😂🙏

I just want this situation to end 🙏👀🙏👀🙏

It is torture and I do mean that – it is – but I guess I see the funny side too. Because really, it’s all in my mind and in how it feels.

I am so stressed and angry, because I am really struggling to cope. The voices in my mind are relentless in the commentary during my day. I really do my best to avoid giving them material to torment me with.

But with this I am powerless, because let’s face it, if you had a magic sleep solution where you could say a couple of sentences, wish someone good night and send happy stickers – and that’s all you need to do – and you sleep blissfully, peacefully, and in comfort, wouldn’t you want to keep that too?

Yes… I’ve written essays in my mind on the inner commentary to that too….. 🙄

In the silence

It’s strange how there can be an overall atmosphere – even when people aren’t talking. It can extend beyond our place and pervade between places more broadly.

Things happen and it all contributes to the entire feel of the server. Weaving itself in and out of each room and message box.

Sometimes a lot happens or a key event, and there is a knock on effect.

A Poem by Unity

You think I can’t hear you? In the silence, over there? You think I don’t hear you, when you cry in despair?

You think I can’t hear you if you judge, scoff or sneer? Trust me I hear you, you are loud & clear.

I can hear you when you’re sad, restless, busy or calm. I can hear when you don’t care, or when life does you harm.

& even in silence when no words are said. Believe me, I hear you in the space in my head

I hear the frustration, the boredom, the rage, I hear all your sorrow, the struggles for real

So remember my dear one, in this big old wide space, that your anguish & fears all belong in this place.

I hear you in the silence, and the noise, and the words. That somewhere my darling your voice is still heard.

Somewhere in this world, as we fly round the sun, I hear you, I hear you, & I see you’re someone.

Remember, remember, your voice will be heard, & even in silence I can still hear your words.

So listen, now, listen, as I say this to you. You’re someone worth hearing & I’m thankful for you

Rockin, Rollin, Riding

One of the things about gaming life when you’re running an organisation with almost 100 people, all of whom are strangers in many ways… and many of whom never say anything….

Is that the whole thing has such an organic nature. There is a vibe to the place always, and always there is something needing to be done.

There are so many people that could do these things – or contribute to them – yet, I frequently find myself in the position of being the safety net or needing one.

People come, and people go, and the feelings of the place go up and down, in and out, like breath, like the sea…

Sometimes we’re riding high on the waves and it feels wonderful, it feels like the best place on earth. And then you get that frozen moment at the very top of the peak, one chance to look around and see the whole world, and then down, down, down you go.

It isn’t just about storms or big crashing waves, sometimes one of the more dangerous things is when things fall flat. That’s when people get bored or they drift away or they feel like nobody hears or sees them.

Like I said, the whole thing is a living breathing organism. As leader of it, quite a lot of the time you are running it either blindly or according to your rule. Neither of which approaches appeals to me as a hard and fast complete method.

My health challenges require that I be adaptable to the current situation, in my life and self. I think this helps to some extent too, with the game, with people. In lots of ways, being flexible sometimes and rigid at others. Being open to changing course in one moment, and letting go of things, knowing when to adhere to some things and not lose meaning or value in other things.

It’s difficult because people are unpredictable, they have their own lives, their own things going on, their own feelings on things. And they all have so vastly varied opinions and beliefs, they live all around the world and many never speak at all.

Certain personalities always shine through and in amongst them some quiet voices also. As well as the loud 😂

Down in the trough I am tired I am low, is it me that they mirror, or me they follow? Is it all in my mind, all the vibes and the feel? Is this point underwater even here, even real?

I dunno.

Maybe it’s coincidence and maybe it’s interconnected. But then that means we each can influence one another, and create our reality as we wish. If it’s all in our heads, let’s make it a good story.

That’s me over and out 😎

Living in an upside down world

I’m screaming again, it’s been too many times this week. I’m exhausted.

This time someone set an alarm (alert reminder) in a page on the discord server I’m subscribed to as part of an online gaming community.

I attempted a conversation about it and I realised from the beginning “I’m doomed before I begin”.

I’m not just being negative – I promise 🙏😂

How to explain how these tiny little things distress me so much… when they make no sense at all to hardly anyone who hasn’t experienced it or known someone who does.

Why? Because I live in a world where my perception of everything, is either so extreme or so mild – that everything is an issue, constantly, always.

And, there is no escape 👀

I was looking forward to some activities and a nice healthy meal. Instead, I spent two hours coping with an anxiety attack, some nerve twitching in my eyebrow, racing heart, I lost my entire plan of the day, my meal, the activities I was going to do, and as if the experience isn’t traumatic enough….

I have to then endure social judgement and an interrogation, because my nervous system and perception makes me respond this way 💀

The thing is…. I understand why I’m tedious or people roll their eyes, don’t understand, find things hard to believe.

Trust me 🙏 I don’t want to spend this time coping. I’m not trying to be awkward. I really would rather not feel like this.

The dilemma is that the importance of my experience is top of my list of priorities. I don’t want to be traumatised having extreme anxiety attacks over tiny things.

Makes sense right?

Wrong.

Because when I discuss something like this with someone, who genuinely isn’t setting out to create issues for me. They are just trying to get on with their life, make their life more streamlined and easier. So at best I am an interruption 😊

Meanwhile for me, it is very difficult to get things across clearly while having an anxiety attack… However, I feel I have to opt for that choice, because I need to address it in order to cope and so I try to do that.

It occurs to me then, how my experience really isn’t on most people’s radar. In my mind I’m thinking – I need to solve this, I need to not feel like this, the alarm reaction is so violent – I have to, and can, find a solution. I don’t want to feel like this every night at this time. It’s in a page I need to keep the alerts on for (just don’t ask, seriously, don’t ask), I just can’t cope with it.

In their mind… I come across as difficult, inconvenient, ridiculous or tedious, some people think my reactions are tantrums or controlling behaviours. They think many things and I am aware of that.

So now I’m explaining why I am how I am and what I am going through, while going through it and it’s just like damn….

Is this for real?

Life with hidden disabilities sucks. Firstly because most of the time they are invisible. Secondly, when things do become visible there’s another social layer of problems to handle as well as the original ones!!!. Many other reasons but I’ll stay on topic for now 😂

Somehow for them the information – that I am experiencing what I am experiencing, gets lost.

It ceases to register that the level of reaction for me is as severe and extreme, as a situation that is severe and extreme for them. Key difference?

For me I get to experience this with every day things!!! Yay!!!! I am special!!!!!

Yeah right… 🙄

Unfortunately, communication is required, and so I find myself having two conversations because of what happened. While trying to cope, and it genuinely feels like the expectation and work is too much sometimes.

Somewhere in all this it’s forgotten that I am a human, with feelings, and I’m in extreme distress. I feel acutely aware, if I was presented with this from someone else, sympathy and reassurance would be on the top of my priority list. What I get is an interrogation on what I’m going through, and why, finalising it with incredulity.

We don’t all experience things the same way.

Conversation one, relaying all this and requesting a solution to the admin.

Conversation two, with my full time volunteer friend/carer, who also doesn’t grasp why it’s an issue.

By this point I don’t even want to know any more what anyone thinks. I don’t want to educate you while I’m having an intense physical, and emotional response to something I find traumatic.

I muted the server….

I just want to find solutions and feel better 🙏😂🙏😂🙏 find ways to resolve it, pick up the pieces of my day before more things cascade into it – because whether anyone believes me or not or understands what I’m going through – it is completely beside the point.

End solution I muted the channel. Conclude lengthy conversation number two with the carer. Accept the loss of things that were important to me in my day. Find a way to move on. Time loss to this point? 3 hours.

Also, I was unable to do anything I was going to do during those 3 hours.

Aaaaaaand I’m not in a position yet where I can either:

  • Pick up from where I left off
  • Continue from this point without addressing basic care needs

Total time loss TBC

Estimate: 11 hours to finish my day

I have been awake for 9 hours….

It feels upside down to me that one person has a traumatic experience and the response from the other parties is an interest in whether we schedule a better time for it, and to essentially remove that person as an issue on their radar, in order that their own schedule is more convenient.

Take home / advice…. I guess mainly to cast a little light on the fact that not everyone experiences things the same way.

If someone comes to you and says they are finding something really traumatic or distressing, and they’re having an anxiety attack, or anything else that is distressing them, acknowledge and listen carefully to that part first.

If you really cannot spare the time at that moment, assure them you will at a set time, and keep to your word (ideally as soon as possible – as being empathetic, doesn’t needlessly extend someone’s trauma) 🙏😎

See if there is a reasonable adjustment can be made, and remember that not everyone can show their distress in ways that are typical or conventional.

And finally, if you care about the person or are interested, maybe ask them more about their experience at another time when they are calmer. Be aware though, that mentioning the experience could trigger them again.

Patience, kindness and curiosity can go a long way 🙏😊💙

Stay safe world travellers, safe travels