Category Archives: Gaming

Waiting For The Axe To Fall…

So… today is the last day before my PIP re-assessment. Needless to say I’m terrified and freaked out.

They’re not nice people, and their job is to try and find ways of undermining your suffering to make sure they don’t have to give you money to live on.

Thus, I am not looking forward to it. Funny that.

Today has already been a nightmare without even factoring in that hovering over my head like a black cloud on Eyore. The isobars have been on the floor again (1007mb) and I could barely move my fingers, let alone myself. It was a big struggle, and although I am glad I got some things done, I am not pleased that I did it. It was really difficult, painful and completely draining.

img_0886It wasn’t even anything big… Well, it was to me, given the weather (torrential rain and chilly), but in and of itself it wasn’t big. I was barely able to get out of bed, or downstairs to my chair, or function. So doing this did feel like a huge mountain to climb.

I was in constant panic attacks and major anxiety (and I still am – my mother, a nurse, came up with a clever way of helping me by emulating the paper-bag trick but using my inhaler – taking it without actually using the pump… it works!). Eventually, I managed to get myself together enough to go out to the new Waitrose in Chester, so I could get some good food to get more nutrition and look after myself better. The place was great and I got some lovely things, including fruit to go in my new Purition protein smoothies. Now I’ll at least have an entire week of nothing but good, wholesome and nutritious food, with my new mountain of fruit and veggies from there.

Unfortunately, it was also extraordinarily exhausting to do this, and by the time I got home I couldn’t even function: I could barely transfer from the car to the chair, I fell when I went to the bathroom, and I had multiple panic attacks. I have no doubt I will not be going to sleep at a reasonable (as in before 6am…) hour – although I can’t imagine what I am going to be doing with myself now. I’d like to think it would be playing games, but I can’t see it somehow…

On the up side, I finally got the Mass Effect Andromeda Loot Crate that I pre-ordered back in March… And it was well worth the wait!

  •  A Gorgeous Pathfinder hoodie
  • 2 lovely plastic children’s(esque) cereal bowls emblazed with the Mass Effect Andromeda Cereal logo around it (especially for geeks!)
  • 2 gorgeaous, heavy (real) whiskey glasses embossed with the logo of the Nexus’ club, Vortex
  • An adorable model of the Nomad
  • An Andromeda Initiative Medalian Coin (huge and heavy!)
  • A Pathfinder Patch
  • Pins of Tempest and Andromeda Initiative
  • A [short] Dark Horse graphic novel: Mass Effect Discovery #1
  • A Normandy Datapad-shaped card with all the details of the Crate on it

I was amazed by it – it was really so nerdy! Worth the wait and the price. I’ve no doubt I will be hiding that hoodie as soon as winter comes! 😋🤓😎

And now… Well, I just wait. Wait to go and face the guillotine that is Capita, PIP [Mis-] Representatives.

Oh, Lordy, I so do not want to go!

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Being Literally Under The Weather…

More long days of Fibro Flareups again. They really are tiring, and they really get to you. They get me down, but even more so do they really get to me. They hurt and they’re difficult to get through, you can’t do anything, and of course that all mixes in with the stresses of the permenany Hemiplegic Migraine.

In and out of something that borders between unconsciousness and sleep, I’ve been able to accomplish nothing I hoped to today. They’re only basic wishes –  brush hair, shower, play game or read, perhaps go out or watch a TV show (Versailles is the current favourite). However, I instead literally get to do nothing because I’m passing in and out of consciousness, and it’s really not nice at all.

This is, quite frankly, dehumanising, disheartening, frustrating, and upsetting. When you just want to do one or two basic things and you can’t you start feeling really, really, pathetic. And inadequate as a basic human being. My hair is a mess, a shower would help on numerous level – not just the obvious one – and playing my games actually puts my brain to work when nothing else can. It’s pretty terrible when you can’t just do at least one of them.

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The reason for this flareup is the weather. I have discovered personally that if the isobar pressure drops into a low of under 1020mb (which is quite high), then I suffer. 1010mb and under and I may as well be dead. I certainly wish I was, to be honest.

On this day, it sat at 1011mb, but was also thrown at me alongside heavy rain, cold temperatures, high humidity, and high precipitation. All together it teams up into the proverbial perfect storm. And I am trapped right in the middle of it.

It’s been hit with everything I have – Pregabalin, Pukka Ayurvedic teas, Key essential oils, even Courvoisier. All given throughout the day – the parts I’ve been awake, anyway. It’s kept a lid on the worse of the “pain” (which in my case now means extreme paraesthesia, and not “normal” pain, which I had before) – however, not enough to stop me from crashing out the entire day. Until now, of course, at 1:00am. No… Now I get to be wide awake. Yey…

The bad days do not make the bad days better. The good days only serve to make the bad days more frustrating and upsetting. When you see others getting on with the basics, you feel like something between a complete failiure as a person, and so utterly usless you may as well not exist. When it’s hit-or-miss as to whether you can do them too, then it’s just hugely magnified. I find that very difficult to deal with, and feeling non-funcional is one of the worst thing that I can go through and experience.

I’m hoping it’s going to get better – supposedly tomorrow should go up to 1020mb with no rain, so that might offer a little respite. Next week is supposed to be quite warm with high pressure too (although with a Bank Holiday looming, I doubt it will do nothing but give way to the patently required Bank Holiday showers and soggy weather…).

But… it’s days like today that really makes it hit home just how bad things really are, and this is a seriously debilitating condition that I have no control over. This is the psychology I can’t get my head around – accepting that this is the case, that I have no control over it. Yes, there are some things that can be done, and I am doing them… what I know about, anyway. It’s not like I’m getting any guidance here…

I hope one day I’ll be able to… coexist… in peace with it, and I hope that day comes soon, because the upset I get from days like today took their toll a long time ago, so every one since has been adding to a high burden I already carry around – what I call my “ball of wrong” in my tummy. It sounds silly and vague, I know, but it’s the only way I can identify things or emotions in me that this is causing, and there’s a lot of them. It’s like a giant “Miscellanious” cupboard stuffed to the brim with unidentified thoughts, feelings, pain, confusion, and scared, whigh has been accumulating since this has started, and it lives in my tummy. That’s just ASD for you, it seems.

Being as Aspie Girl with all these things going on everywhere certainly isn’t easy…


Game On…. An Analogy

From today, I am officially in my second year of living in North Wales. Away from London. In the damp and cold of the valleys of Snowdonia, causing more pain, causing more boredom and constant mild-to-strong despair.

20160327_193719000_iosPart of me is surprised I’ve survived (almost literally), that I’ve made it. The climate here is of the variety that should never be anywhere near someone with Fibromyalgia. It causes terrible pain, stiffness, constant difficulties in managing even the smallest things. Then there’s also the fact that it completely screws with my ASD, because it seems if there  is one serious contender for being my Kryptonite, it’s the Fibro pain.

In the last year I have learned a lot of things – yet it’s still not enough. However, I have come to think about it akin to playing RPGs – where at first you’re a Level One nobody noob. You have nothing and a long journey ahead of you to defeat a great evil. Often, you can be in the wrong place at the wrong time at the beginning – a twist of fate thatimg_0674 leads an unassuming average Jo, or other general person, in the position of fighting someone, something, or some war. The upshot is that you’re basically starting from scratch in some way or another, or at least with very little. Sometimes your character is someone who lost their memory, or their powers/skills. Sometimes I feel like that’s me.

When I came here I had been – effectively – stripped of everything that I’d ever  had and dumped in a strange place with nothing. A Level One noob. In the last year, I feel the learning curves I’ve ridden, the things I have learned, the things I have achieved, is like levelling up. RPGs have “Skill Trees”, where there are a selection of umbrella effects, skills, talents, or qualities that can be trained up – as you play through the game you gain experience (XP points) and with those you can select new skills from the tree inventory: Gain extra Magic or a new spell, or be able to sneak more quietly, open a new skill tree up, perhaps even become a Master. The more experience, the higher your level, and with each level or points total you can add something new to your skill set or life (even cooking and bartering can be skill trees to level up).

Just like real life, in games you learn and become experienced and better at doing it. Gaining  XP and levelling up is like training, practising, or studying – the more you do it, the more of an expert and more knowledgeable about it you become. And just like in games, life can also be about “levelling up”.

20160327_193650000_iosWhilst I’ve been here, I’ve felt like I’ve been levelling up – but only after having to start again from the very beginning of the game because the computer flatlined and took all of my saves with it, having already played to a very high level. So I’m going back to square one, and a grumpy, irritated, frustrated Level One character. However, this time I’m not really a noob. Staying within the game analogy, I’ve spent over 30 years practising within this game… it’s just that I don’t have all the cool abilities I’m used to using after levelling my last person up to a really high standard. All of that is gone, and I’m having to re-do everything from scratch.

This time I at least have a better idea of  what I’m doing and how to go about getting it – like when you come back to a game you know, and you know all those little tricks on how to get what you want without having to search for it or work it all out. This time, I’m focusing on different skill trees – ones that suit me and my “gameplay” (read: my life and my personality) much better. I suppose I’ve levelled up fairly quickly. I’ve retrieved a few “perks” from my skill trees to make it easier. I have “skills” that I didn’t have before (understanding my ASD being one very key aspect) – and every new weapon in the arsenal helps to fight the cause… But there are still so many others that I need – and I still have to work hard to find them and achieve them, to collect the best weapons, the best armour, the best allies. There are real world counterparts to all these, and they’re frankly just as important.

img_0080However, things are different this time round. Actually, almost everything is different. I am even a different character this time. You can’t go through something so big without it changing you… except I think it changed me for the worse. Perhaps once I level up some more and  become a stronger character, I won’t feel the same. I won’t feel so vulnerable, afraid, and pointless. But I don’t know that. I just know how I feel now, and I feel like all my hard work and effort I put into the my last character was a waste of time. Pointless. Destroyed for no reason. I wonder why I worked so hard and did so much if it was all done for naught… and why I have to start again from the very beginning to pretty much have to do it all over again.

Each one of these RPG characters is built into something new and different on their journey to “saving the world”. Their presence at the beginning of the games is a mere shadow of what they become by the end. By the end they’re powerful, strong, fearless, determined, focused, and everything else they weren’t before. In the end, they’re there to walk their journey and defeat the evil stalking them. In the real world, that truly could be anything. In this case, it seems to be myself. I am my own enemy… and I need to overcome that and defeat that part of me that wants to self-destruct.

But it’s a long journey to get there.

Just ask Frodo. Or Bilbo. I’m sure if you want to listen, they can tell you about all their journeys too….

 

 

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Change and Adapt… Reluctantly Speaking

Changes are not good for me. Changes are even worse because I hate them. I don’t know what to do with them and they scare me. After almost quite literally overnight having my life as I always knew it taken away from me, I have not adapted well. Worse – I have now had to think about starting to adapt my environment to suite me, and that is not easy. Or cheap. Ten months ago, on Halloween 2013, I began this journey of hell. Somehow, coming down with pneumonia, move house, go to work, and having to single-handedly look after our new rescue dog who had just been brutally attacked and was terrified of everything, just broke whatever that was left of my body (and it was already extremely frayed). I’m not technically disabled (and I do not like that word, anyhow) – but I have been certainly left unable to do a lot of things without help. A lot of help.

I had my longterm best friend, who I live with, home on sabbatical for months. During that time she became my accidental carer, my helper, my little guardian angel. My SBT-mix, my lovely puppy dog, Soul also became my accidental helper. As my health deteriorated, my mental health deteriorated, and the pain kept on increasing, and if it wasn’t for these two I don’t know how I would have managed to get through the last nine months since this started. However, things have changed again. My friend – who is also my companion and helper – has now had to return to work… Sabbaticals aren’t forever. On the positive side, she returned to a closer office to home so she leaves later and returns earlier than before. On the negative side, I’m left to fend for myself. And I’m rather terrified about it, and about the fact I must now do it every single day. The most basic things are exhausting and daunting. Making food is reduced to making sandwiches from pre-made sandwich fillers or things like sliced ham. Making coffee is extremely difficult, and I can only do it once because after I’m exhausted and in pain. Having had someone in the house as I get worse has been a blessing – but now I’m on my own, I have no other option than to figure out how I’m going to manage this situation.

I’ve already tried to start. I’ve ordered new gear for the dog so he can physically help me more – he’s a strong and enthusiastic dog who enjoys being physically challenged (… well, when he’s not busy being happily asleep!). I’m going to get myself a cute little hot water dispenser so I can make my own coffee, I’ve already got myself a high bar stool chair thing for the kitchen, so I don’t have to try and stand when making stuff, and I even use it to bring the sandwich ingredients to the counter, so I don’t have to try to carry them (I can’t lift much of anything, and holding stuff is difficult enough too). I’ve worked out my “independent” food – like the sandwich fillers, picnic food that I can fetch from the fridge (cocktail sausages, little falafels, ready-cooked chicken, etc), pre-prepared salad, humus dip… I can eat all this stuff without too much bother. If it’s too much bother, it causes too much pain, and then I can’t even eat, so having figured this out is a bit of a relief. At least now I know I won’t starve.

Souly The Helper DogThe other side of this is going outside without anyone but the dog. Both doggy and I need to go out and walk as much as I can, so we go anyway. He pulls me (and I mean really pulls me) so I can actually go out. I can’t really move my legs, so walking on my own is difficult enough in the house. Going out is not an option unless I have the dog. Have you ever been pulled by a really strong dog? You’ll probably know they’re perfectly capable of dragging you about – and that momentum is what gets my legs moving and allows me to walk. I trained Soul to pull me properly – he has his commands, does as he is told, and knows he’s not in front because he’s the boss: He knows very well he’s in front and pulling because it’s his job, and it’s a job he takes pretty seriously (until we stop – then he wants to cuddle and kiss everyone he comes across!). It’s difficult for him to drag me about – I’m very lucky the dog my friend accidentally brought home to us (he wasn’t planned – she saw him and just brought him back!) was a dog bred to work and able to pull – but he really gives it all he’s got, and even if we’re both having difficulty in getting home, he’ll dig even deeper and work even harder, going up a whole new extra gear. He even knows better than I do if I need to go home – he’s amazing! He works like he’s in a pulling contest for World’s Strongest Dog – and he just might win one of those on the first try after pulling me about for the last few months!

Going out with him gives me confidence. He helps me, makes me feel safe, and I know that anyone who might want to do anything to me will think twice when they see him. He’s 23kg of muscle, thanks to a good diet and pulling me about every day. They don’t know the only thing he’ll do is drown them in kisses, unless they try to actually hurt me. I know if I was genuinely attacked he would protect me, regardless of the fact he’s never been trained do so – that’s just instinct. We go wandering about, going on our routes, and we just trot around on our own. I cope by stuffing headphones in my ears and blocking the world out, and focusing only on Soul and whatever I am listening to. After about an hour and a half of dragging me about, doggy is really tired and is quite happy to sleep it off the rest of the day, unless I need him to help me.

Unfortunately, there comes a time when I must go out alone. This afternoon, I must go to the GP by myself for the first time since I got this ill. Since I’ve been unable to walk on my own (without Soul). I’ve had to book a cab to take me… The practice is only just down the road, and frankly I rather resent the fact I have to pay for someone to take me there. I am fighting with myself to not be angry, hurtful or hateful to myself about this. I feel like I should be able to do it, like I used to be able to do it. Even though I’ve always been overwhelmed by going outside – always been agoraphobic to some level or other – I’ve always been able to use tools and techniques to go places I’ve had to get to. But now, I am in so much pain, unstable on my legs, feeling so vulnerable, I don’t want to go anywhere on my own. This time I can’t even take Soul. It’s honestly going to be a lot of trouble just to get out the house and walk to the car when it comes.

I’m scared of going; it’s going to be hard – physically, emotionally, psychologically. I have learned a lot about myself in the last few months – more than I’ve learned in the last 30-odd years of being me before, so I’m trying to use that knowledge to help myself now, hoping it’s going to help me cope and not have a panic attack or meltdown. I’m so used to going out with Doggy or my friend that I have no idea how to cope with going out all by myself in this state. So, I did myself a favour and downloaded a new album that I wanted this morning that I know will help me feel more relaxed and focus my mind on something I love (the soundtrack to Mass Effect 2, to go with the Mass Effect 3 one I already have… I’m such a Gamer Girl Geek!), and I will also have my books to read in the waiting room on my iPad. I hope this will be enough for me to manage. Even getting some of the anxiety out by writing this has helped a little, allowing me to confront and analyse my feelings, and to be able to accept them and at least try to not fear the fear itself. I hope that if I just focus on the music I will be fine. I really hope I don’t have a panic attack… The last thing I need today is a meltdown from one.

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… I knew all this was coming one day… but not quite so soon. I’ve been slowly been getting progressively worse, and probably subconsciously taking more note of it that I probability thought I did, I probably did a lot of things that have probably helped it along over the years. However, I’ve enjoyed throwing myself into the physical activities that I used to love  and can no longer do. Horse riding (and falling off the horses) was probably the worst of them – but dancing, walking, singing, yoga… I became absolutely absorbed in each one, to the point that although I miss them, I know I pushed myself and completed enough of what I wanted to do with them that I’m not too disappointed about not being able to engage with them now. On the other hand, the normal things you take for granted. Even writing this has been very painful. My hands are aching a lot, in the top bones and in my fingers and thumbs, especially in my right hand. All this makes me feel afraid of going out there alone, of being at home on my own… I hope I’m going to get through it all in one piece.

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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.