Tag Archives: focus

A Sense Of Calm

New things to help:

 

Over the last week I’ve found a few things that helped me, including information and insight regarding ASD and alleviating the negative side of it.

I found these two websites amazingly helpful and gained a lot of extremely helpful tips and tricks from their websites:

  • Spaced Out And Smiling – There are some great tips and insights from this duo of Jamie and Lion
  • And Next Comes L – I have learned a great deal about using various techniques like aromatherapy from impressively inspiring mother Dyan

 

From the information on these websites, and a little poking around on the internet (thanks, Amazon & Wowcher!), I’ve found another few things that have improved my existence and eased up on the crazy:

 

Aennon Humidifier: Cool Mist with 7 LED lights & aromatherapy

  • Cool Mist Humidifier
  • Aromatherapy
  • Calming
  • Clarity and focus of mind
  • Relaxation to sleep
  • Includes eBooks & online basic aromatherapy course

aennon-humidifier-puffer       aennon-humidifier-puffer_2

 

Safari Lion 

  • Giant colourful lion makes an excellent comforter when feeling crinkley-lionanxious
  • Is soft and cuddly enough to help remain calm and confident
  • Weighty enough to help my “floatiness” as well as comforting
  • Has many fabrics and textures (they’re not only good for kids!)
  • His crinkly mane and legs are soothing and helpful to remain calm, or to help with calming me down when anxious
  • Big and soft enough to cuddle (it’s about the size of a large baby – seriously)
  • Very good when helping with escalating anxiety

 

Giraffe Comforter Blanket

  • Just big enough to be comforting, but not too biggiraffe-blankie
  • Soft and multi-textured, with soft while fluff on one side and stripy slightly coarser material on the other
  • Have added essential oils (specifically Ylang Ylang) to help calm and soothe
  • Useful to cover my head when suffering sensory overload – along with the Safari Lion, helps with “recharging” after experiencing a stressful or anxiety-inducing situation

 

Aromatherapy & Massage: Essential Oils

  • Created bespoke essential oil recipes for ASD/Asperger’s & Fibromyalgia
  • Oils used in: Traditional oil burner, Cool Mist Humidifier, and in massage oils
  • Check other people’s recipes or peruse the effects of each one and make up your own

 

 

  • Good carrier base oils:
    • Almond oil
    • Clear Coconut Oil

 

There are many other really great and effective essential oils, and everyone’s requirements are different, tastes and likes are different – but there will always be something that suits you and your needs.

 

Whole Body Massage Mat with Soothing Heat Therapy Mode

  • Relaxing
  • Heat helps with Fibro pain massage-mat
  • Heat helps muscles unclench
  • Alleviates tension from pain
  • Has helped reduced pain & greatly reduced amount of pain relief required, especially in the evening/night
  • Purchased through [now closed] Wowcher dealbut there are others on the site which are virtually identical

 

It has not been very long, but they’ve already started to change a lot of things. I’m amazed that the Massage Mat alone has helped so much in reducing the quite excessive amount of pain relief required before. It was as if nothing would help alleviate the pain, and then suddenly this mat is taking away a huge amount of continuous agony – it’s truly amazing.

Another amazing thing is how the Aromatherapy Essential Oils also make a difference. The Aennon Cool Mist Humidifier has allowed me to gain a clearer head and more energy just simply by adding certain oils to it (like Juniper/Jasmine/Ylang Ylang/Bergamont/Vetiver – and take out the Bergamont, it then becomes more relaxing for bedtime). The same goes for the traditional oil burner – and tea lights run out in about 3 hours, so putting that on ready for bed is also a good idea, as the candle will burn itself out like it’s on a timer.

One of the most surprising and best solutions, though, has been the Safari Lion (he has been renamed Ser Crinkley Puff… because that’s what he does), and the Giraffe comforter (aka Travel Blankie… because who needs grown-up words for these things when you want them to be fun?). They’ve been quite instrumental in assisting me achieving my goal of tranquil neutrality for the last couple of days. Ser Crinkly Puff has been keeping me company and sitting on my lap, and his weight and loud crinkles has helped me keep a clearer head than usual… all with the help of the Travel Blankie and the Aennon humidifier and its Aromatherapy, whilst sitting on my lovely pain-soothing mat.

I’ve started feeling a little better about things since I got all these. I even coped well and didn’t really react with too much anxiety when I was informed of something I would otherwise find very difficult to deal with. Despite not quite having become accustomed to what it is, or wrapped my head around it, I’m calm and I haven’t reacted with the intense panic I would have done (and have done) in the past. For me, I’ve been relatively stoic about it… So far, anyway!

This gives me hope that there is a future out there where I can at least manage to deal with – and keep a lid on – the negative side of being an Aspie, and keep the pain under control without resorting to liver-annhilating pain relief.

It certainly would be nice.

 

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Keep Sane… Keep Going…

I would have expected that after more than two and a half years I might be used to this by now… the pain, the exhaustion, the enormously excessive fatigue, the lack of mobility, lack of focus, lack of concentration, lack of my usual ability to fixate obsessively… but I am not.

I find that I feel quite lost without those things – particularly the lack of focus and obsessiveness, inability to mange to do the thing I love. It seems unreal that after all this time I still suffer like this with it. Other people with Fibro don’t seem to go through quite the same thing… I am quite despondent from it – I wonder what I am doing wrong if other people can manage their Fibro condition, but I cannot.

Is it as simple because I have complications in my symptoms from the AS? I have sensory hypersensitivity as it is, so that must exacerbate it. Is there something else? Do they get a better NHS service? Are they overseen by a pain clinic that helps them? Is it because they can take medication that I can’t? Is it because I suffer is quite strong and unfortunate side-effects from the Pregabalin? I do not know. I have no specialist; I never have. Not in London, not in Wales. There is no one to ask. No one to help – the NHS, the GP services… everything is all in turmoil, and as always, I am left to my own devices. Nothing has changed there in 25 years.

The thoughts, these troubles, run rampant inside me constantly. The questions spin ceaselessly through my head and burn my mind… what’s left of it. Right now I am so exhausted I am in another world, zombified, zoned out as if I’ve been given some massive tranquilliser doses. I can barely focus on what I write, and must re-read what I am saying and attempt to write quickly what is on my mind before it genuinely forgets it all. I am at a loss to know how to help myself – I push myself, I rest, I attempt things that require concentration… and if I remember what I’m doing and realise that I can’t, that’s when the tears of frustration start burning in my chest and anxiety rises all the more. The worst part is nothing seems to work, and I am a slave to the weather. Meaning so far within the last eight months I have managed to do very little of what I hoped that I would. Particularly this summer.

Some days have been nice, some days awful, and some days so bad you can’t even see out the window for all the fog and rain… Yes, just like my life.

Once again, the rain comes tearing down, hammering off the roof and windows. Wimbledon is playing its one single game under the now-domed Centre Court. And people are lucky if they don’t require a boat to get around. The pain, the aches, the stiffness, the immense pain and unimaginable fatigue, all makes even a simple existence difficult. I would be quite happy watching the tennis with one eye and reading one of my copious amounts of (Kindle) books with the other – there’s quite a virual mountain of them still going unread, because I cannot read now. Not that I don’t know words (obviously), but because I do not remember what I have read, nor retain any information about it, not five minutes later.

I am used to retaining most things. I am used to my brain working in multi-core processing at hyper-speed. I am used to being able to do things. I am still not used to not being able to  do almost anything. I have all the time in the world on my hands… and my mind, my brain, my lifeblood, seems to have been taken away from me. Thus I cannot seem to utilise that time in the manner I would prefer. I would be able to get so much done – read books and magazines, install and become accustomed to using Linux, coding, and networking, get better at chess and Hearthstone, listen to audiobooks.

On the other side, I have ended up mindlessly watching TV catching up on virtual online streaming “box sets”…

Perhaps the most obvious thing to suggest here is to just “rest and sleep”. “Resting” makes me mentally hyperactive and frustrated to the point of meltdown (on occasion). Sleep… well I can’t sleep. Never have been able to. Now it’s just worse. Throw in the nightmares and it becomes even less inviting… though these have become less frequent of late, thanks to finding the “Sensory Diet” and implementing it, resulting in less meltodowns too (going down from several a day, to no big ones for several weeks).

However, the lack of ability to allow my excessively hyperactive brain to “run”, to get rid of its energy, to approptiately use this free time to learn, to read, to practice I what I’ve learned… it all gets too much sometimes. Like today. Like most other days. My brain wants to take a massive run at a whole bunch of things… but the focus and energy required to do it is lacking. Missing. Gone. Sometimes there’s a flare of it, but it is short-lived. I am quickly exhausted within a short time, so I feel there is little point even starting when I cannot finish.

Sedentary life is not for me – not the mental sedentary life anyway. I’m not generally worried so much on the physical (a little yoga and dance has made me quite happy there). But without the ability to mentally “go nuts”, I am frustrated, irritated, easily annoyed, fidgety, broody, shut down. The pain of movement, of thought, of even sitting and sitting and typing, of trying to organise anything, is awful to the point of excrutiating. To the point where I feel it’s just not worth the pain. The pain sears by brain, short-circuits it, burns it. I wish I knew how to stop it.

 I wish I knew how to be calm. Remember how to be… me.

I miss being me.

 

 


Wonderland

Annie sang about “Tomorrow”. Everyone talks about “Tomorrow”. Everybody waits for “Tomorrow”. It’s “only a day away”… Right?

But what if tomorrow never comes? And if you think is has, it’s probably just an illusion. One that shatters really easily as soon as you let your guard down. When you’re vulnerable to attack.

I thought “Tomorrow” had finally come. I had what I had always wanted, and thought I had found some peace. I thought I was now far away from the Lewis Carroll-esque madness of Wonderland.

But… no. I was not.

I was a moment from being pulled back down that rabbit hole again… and here I am. Again. Living in that same fire-and-brimstone, crazy, bizarre, seriously-gone-wrong hallucination even Tim Burton couldn’t imagine. The one that is oh-so-familiar, because I’ve been here  before. In fact I lived here for many years. Way over a decade. And now I’m back. Hello “Wonderland”. My “Tomorrow”… and every other day after that.

I am hurt (falling down fictitious, imaginary rabbit-holes to a form of tripping hell apparently hurts…), I am confused (who wouldn’t be…?), I am scared (same again), and there is apparently no way out (…great). After two and a half years of living in it, after being away, free to live my own life in “normal-ville”, my “old home” is now more of a stranger to me than perhaps it was when it was new.

Have you ever left home, gone away for many years, then come back and not really known what to do with it anymore? They’ve changed some of the roadways. There’s some new areas, new buildings, new and expanded sectors of real-estate – where there were once fields, there are now homes with families long living in them, new shops where familiar ones were, or you just don’t remember your way around anymore. It’s a place with a huge culture difference, even a language or accent/dialect difference.

As you can guess, I’m going to say returning to “Wonderland” is very much like that.

 

Wonderland

And what exactly is “Wonderland”? It’s a dark place where your worst nightmares come true, where unbearable pain is constant and consistently agonising (whether physical, emotional, or both), where the incredible and unbelievable (in a bad way) happen, where there are catastrophic events exploding over and over again, where if there can be a set of events that can ensure the worse that happen, it absolutely will. It is a dark and abstract place that doesn’t feel like your life, and yet – somehow – it is.

The only way to survive living here is to keep your hope close and your cynicism and wariness closer. Where you expect the worst, and maybe hope for the best… or at least something that isn’t the worst. And sometimes it’s where you’ve got to simply expect something literally unimaginable: This is the place where “imagining the worst” doesn’t even come close to what actually  ends up happening. You cannot relax for a moment – letting your guard down is a chink in the armour. Then it will get you and take you down into deeper darkness again.

To (hopefully) many, this sounds over-dramaticCatastrophic. Probably even bizarre. But it really isn’t when you’re living it. There’s a strange life some of us have to lead where pretty much nothing goes right. Ever. I call it Wonderland – because it’s as cold, dark and trippingly-bizarre as the place in the books. It’s a place of nightmares where nothing seems real, and that it really all just a dream you are going to wake up from. Any time now. No, really. You will…

It’s the place where you live those real nightmare every day, and you can never wake up because you’re already awake. Where everything has been taken away from you, leaving you with nothing. Just a crumpled ruin on the floor left in pain and still being kicked. Where the moment you think you’ve managed to run away and escape it, it sucks you back in.

 

My Wonderland

The first time round, I was a child with (as I now know) undiagnosed Asperger Syndrome, severely bullied at school, living with a family going through its own excessive, and quite frankly cruel, trauma and turmoil. It was a long, complex, agonising, confusing and heartbreaking 15 years of my life, which was added to the first 11 years before of simply being “difficult”. What happened after that age was simply impossible and (not an over-dramatisation in the least) incredibly traumatic. Even to point of being treated for PTSD by the time I was 18.

I was labelled “Depressed” and everything was left at that. As if it was the magic word and it was the beginning and the end of everything. It didn’t come close to even touching on what was actually wrong, and I wouldn’t know for another 21 years what was actually going on. In fact, this “diagnosis” only compounded the situation and only made everything so much worse. It included drugs and therapy that was highly inappropriate, no support for what was really the problem, and ongoing despair because nothing seemed to work to “fix” it. No matter what I did, I never seemed to get any better. It wasn’t until I discarded everything that I presumed that I should do and did what I wanted to do that I started to get somewhere helpful, and to a place where I felt a lot more comfortable with myself, even if it wasn’t exactly perfect or completely “fixed”. It was still so much better than it had been  before.

Coming out of that just before turning 30, I thought I was going to be “home free”. I was climbing out of Wonderland. I was living better, with a exciting and interesting new career I was damn good at, that I worked by backside off for, and with a sort-of new family of my very own. Even a new dog. It was too good to be true. I even wrote about how great things where going in my (handwritten) diary. It was my last entry of that year. And it was too good to be true.

Because then Wonderland called again.

And when the darkness calls, when it beckons, and you don’t comply… Well… It comes and finds you to drag you back in again, even if you are kicking and screaming.

It was October 31 2013. Halloween, of all days. Samhain (pronounced ‘sow’inn’) is Pagan New Year. And what a New Year’s present it was that I received. Early in the morning I was walking the dog with my roommate and best friend in the park. This is the day where he was subjected to an ongoing ferocious attack by another dog, actually instigated by an well-known and unstable dog-walker/owner (no-one knows which) – I actually heard her call the dog to attack mine and I was horrified.

My friend and I were left to the two dogs fighting, whilst the other person literally ran away. It took maybe 15 long minutes of ferocious dog-fighting to get the two of them apart – and my friend took away the other dog (who once was taken away was back to normal, since it he was only doing it on command). I was left with Soul (our dog), with him injured and me being able to no longer breathe. The ambulance was called because we both presumed it was an asthma attack (horrible, but run-of-the-mill, as things go). But they got this strange look on their faces and told me it was not asthma and that I urgently needed to see my GP – who saw me right away after I explained what had happened and what they had said.

I was stunned to find out it indeed was not asthma. Oh no. Life is just not that simple. It was sodding pneumonia. Right at the onset if it, which is why I hadn’t been massively affected, with symptoms that I had assumed was just down to asthma. This wouldn’t have been such a complicated matter if this wasn’t also the very same week that – on top of my dog being savagely attacked – my friend and I were moving apartments. To the other side of London. Due to this illness, I managed to wheedle a few days off work to move house and try to deal with the pneumonia whilst packing boxes and sending them across the city. I had the antibiotics, I had taken the dog to the vet (straight after seeing my GP), and had very ignorantly presumed it would all right itself out in the end.

When we arrived at the new place there was unpacking to do and an injured, freaked out dog to deal with, who also needed walking in an unfamiliar area and living in a new home. At the same time, I was also expected back at work after just a week because there was an “emergency” there, along with vital things to do that no one else was trained for. I walked the dog every morning before work and then made my way on the 3+ hours’ round-trip journey to work from my new place, which included getting a bus, then the tube, changing tube lines, then getting another bus. Each way. And squeezing in a 7 hour working day as well. So to say I got absolutely no rest from the minute I was diagnosed and onwards was an understatement. In fact, I had not done so much at once for several years… let alone whilst being unable to breathe properly with a temperature and constant, quite violent, coughing fits.

I had drastically underestimated the severity of my illness. It is almost needless to say that it just simply went downhill from there. I gave my body not one moment of true real rest or respite to recuperate from the illness… so it just got worse. Out of hand. My body basically started breaking down – instead of being allowed to get better, it simply deteriorated. It couldn’t get better, so it just got worse. Every day for two years it deteriorated, each day being worse than the next. The awful decisions I made began a terrible chain of events that sent me on a downwards spiralling tailspin I could never recover from… and that is something I will always have to live with for the rest of my life.

Consequently, I was dragged back into Wonderland. Only I couldn’t really be kicking and screaming because I could no longer actually particularly move. My life as I had known it was over. Now the nightmare really had begun. Wonderland beckoned once more, and I had no choice but to fall down that terrifying portal-esque rabbit-hole again.

 

A Life In Wonderland…

Fibromyalgia was my burden to bare for my choices. My choice to stay employed. My choice to return and help out at work. My choice to look after my new house. My choice to keep earning money to pay the new (much higher) rent, along with the bills. My choice to look after my dog. My choice was to support my friend by walking the dog on my own because my working hours weren’t set and hers were.

My choice was not to look after myself.

So Wonderland called.

Living here again has been heartbreaking and terrifying. One by one I lost everything I had as I descended into the rabbit-hole… my career, my mobility, my dignity and self-respect, my mind… then finally my best friend and my home.

I was effectively sent home to live with my parents again, like I was regressed to being a small child, because they were the only ones who could look after me. My father was only part-time employed (after retirement) and my mother a nurse, so she had the perfect background and skills to help me. I required almost round-the-clock care because I could no longer do most things for myself – much to my immense frustration and despair. I was 35 and was having to live like a toddler again… and one in complete and constant agony. It was – is – quite frankly, humiliating, heartbreaking, and soul-destroying.

But that is what Wonderland is. That’s what it’s all about. There’s no sunshine, bunnies and rainbows for you here… this place is about breaking you until you have no more to give, and yet still absolutely expected to be carrying on with the fight.

Giving someone with hyper-sensitivity to pain from Asperger Syndrome Fibromyalilga, of all things, is just cruel. It’s like locking two mean adversaries into a single, small room and locking the door. Without looking back and throwing away the key. You can guarantee they will not play well together whatsoever. The reaction is explosive and the destruction is absolute. They will not agree and they refuse to even agree to disagree. Ergo there is nothing but chaos and turmoil… both of which are also great arch-enemies of Aperger’s. There are no happy endings to be found here… nothing left but ruination and rubble from the war inside. Everything is destroyed, and there is simply nothing you can do to rebuild it no matter how hard you try.

So, I have no job. Not much mobility whatsoever (but I’m working on that). An existence that involves living every waking second in extreme pain (and that’s before trying to move).  I lost my home. I lost my best friend. I’m living with my parents. I am alone. I lost most my memories and half my mental capacity and focus from the pain and medication. It’s now difficult to remember and learn new things, to focus, to concentrate, to even cope with new things. I have suddenly found it so difficult to focus on reading for the first time in my entire life. The pain in my hands makes if difficult to type or play games. I can no longer sing, play piano, or think of music. It feels like I left everything behind back on the “surface”, before falling down the hole. It feels like I have nothing, and I have lost everything.

Well, there is, regardless, a flip-side… Wonderland takes away everything, but in that it also teaches you a lot of things.

When you are forced to live in the dark, you learn to see in the dark. You learn to adapt. You learn to prepare for the worst, and to expect those things you feared the most to become reality. You need to have the will to survive, or you die in there. Every day is a lesson learned, a new way to survive, to learn to live in Wonderland, in the nightmare you cannot believe can be real, despite actually living it every day… hoping every day you get to wake up from it… and never doing so. Where you wake up from nightmares into another one. Where the darkness and despair never really goes away.

Somewhere in this mess, I have learnt who – well, what – I really am… I discovered all those things I went through as a child, and even when I was all grown up, was down to my having Asperger Syndrome. At the very least it complicated matters that were already complicated, if it didn’t cause them directly. Discovering and confirming this fact that I otherwise never would have found without this… disaster… has brought at least something positive in with it, taught me a lot about myself, acting like a candle in the dark. One I can see a little with, so I don’t feel quite so… lost and alone.

However, this small candle gives cold comfort in a world where nightmares and worst-case-scenarios are not just real but actually “normal”… It’s literally where my greatest fears and waking nightmares have happened, where those worst-case-scenarios I had imagined were candy-floss and kitten-fluff in comparison to what really happened. I can’t walk. I can’t really move much. Some days I can hardly breathe, all from the pain. I have nothing left of the life I once had, and I’ve been ripped apart from almost everything I used to hold dear. A small candle cannot extinguish that kind of pitch-black that fills the air around the world I am now forced to inhabit once more.

This life hardens you. Even when you’re weak, you are not. You never give up because you can’t. If you do, then it will take you down to its greatest depths of obsoleteness and despair… which by then most people can never fight their way out of. So you keep fighting before you get there. Some of us were born to struggle. To fight. To slay demons. To be warriors in the dark, fighting frightening, strong, and terrifying shadows whilst being broken by utter and complete heartbreak. It wants to see how much you’ve got, what you have to give, how far it can push you, how far it must to go break you. Then when you are broken beyond repair, it sees whether you can still drag yourself up and fight on. Regardless of the pain you are in. Regardless of the burdens you bare, and of the pain inside.

Victim or Victor… it wants to see what you decide.

 

 

Final_Diary_Entry_26.08.13[image2].jpg

The final tipping point of even ground, and the threshold of demons: Too good to be true… And it was.

 A snapshot in time – Moments before it all went so wrong: The final diary entry before everything crashed and burned around me…

 

Nobody_Will_Hit_As_Hard_As_Life.png
 


The Pain Game

I am unable to focus. Unable to think. Unable to feel… except the pain. There is nothing but the pain. It’s been  around 914 days since it started. About two and a half years. All that time where nothing else has mattered. I used to be “me”… but now there’s nothing but the pain.

My average day ranges from a “good” 7 to a horrible 10+. If it’s really good, it might go down to a 6.5 – if I’m really lucky. Basics are hard, or impossible. Even typing is a strain on my pain barrier… making things like learning code or playing with a Linux system difficult or impossible even if I could think straight. I have to live in a world where I’m classed as… OK, I can’t say the “D” word. It’s where you’re incapable and industrialised – where you need things to help you, but they look like an institutionalised little old lady threw up on them.

I used to do yoga. I used to sing. I used to dance. I used to read books like my life depended on it – all kinds of them. I used to watch movies. I used to work. I used to do a lot of things. Now I do almost bugger all. There is so little that I can do. The pain, lack of focus and current memory problems (thanks to the meds) are pretty crippling, both physically and mentally. I wouldn’t mind so much the lack of movement if my brain could work… but it doesn’t. On good days I take advantage, but there aren’t many of those.

The worst is not being able to play games nowhere near as often as I would prefer. Games help clear my head, help me think, help me analyse, help me relax, help take me away into another world. Having that taken away from me is quite the last straw. To add insult to injury I also can barely hold up my iPad anymore (the iPad [4] Retina weighs nearly double the newer iPad Pro/ Air 2) – meaning reading and writing on it are getting impossible, and I do not like using a stand (don’t ask, it’s a long explanation…).

To be frank (and to use colloquialisms) it’s “messing with my head”.

Stars_Can't_ShineI am particularly convinced there are many ways to deal with and combat this – but the fact I am unable to work out precisely what any of them might be is leading to making me feel constant depression and heightening anxiety. I want to do all the things that I can realistically do – a little basic yoga, coding, gaming… but I do not know how to control the pain or my response to it. And my response to it is not especially good.

It does not help that this causes more physical complications… otherwise generally known as “psychosomatic” symptoms – where anxiety and fight-or-flight hormones become effectively toxic and cause “stress-related illness”. I have enough going on without having them too. The pain is like a cruel and sadistic captor, keeping me hostage with its games and strange punishments… and sometimes I wonder if I’m beginning to experience Stockholm Syndrome – just doing as it says all the time, not thinking for myself or making my own decisions. Actually, no – I’m pretty certain I have it.

Stars may shine with darkness, but I do not. I am a prisoner of the pain and I am not strong enough for this. I have already been through one gauntlet and I thought I had come out the other end. Am I still in it, or is this a new one? Either way, I feel twice my age, exhausted and tired of life. I am tired of the pain. I am tired of being tired, and  of being entirely emotionally drained.  I cannot be that person who shines in adversary – not now. It was hard enough the first time, now I’m just too old and tired to manage it again.

I am lost.Lost...

 

 


Don’t Look Back

Focus On Your Strength

Focus On Your Strength

 

Pain…

Sometimes, that’s all there is. It takes over your mind. It takes over your body. It takes over your life. It’s everything.

It’s your downfall. It’s your enemy. It’s hell on Earth.

So… how can you not focus on the pain and stay strong?

It helps if you know why you have the pain. It doesn’t make it go away, but at least you know what you’re facing. You know if’s a Really Bad Thing that’s causing it, or if it’s something that isn’t so bad that can either be cured or can be managed without complications or danger to life. Whatever it is, you can deal with it.

I’m not dealing with it. I try to ignore it… but that’s rather difficult. So instead I take my mind off it, working to find the “Silver Lining”, whereby I appreciate the small token that I at least have the time to do things I never had time for before. Those things like writing, watching things I never got around to before (who usually has time to watch new series marathons on Netflix every day? I’m definitely not missing out on that opportunity!), playing long gaming sessions and getting through those little things I never had time for before but wished I could.

 

Time Has No Meaning

I have nothing but time now, so what things I can do, I do. Those things that myself, and others, in the middle of rushing around doing things would love to have the time to do.

On the other hand, there are things that I would love to do, but now I have the time to do them, I can’t. I can’t go for walks and walk my dog around in the park, I can’t go horse riding (nor can I afford it now I’m not working – ironically had the money before but not the time, and now I have the time I don’t have the money…), I can’t sing, I can’t go ambling around London for fun like I used to, I haven’t been to London’s “West End” for going on 2 years (and I mean the entirety of central London’s shopping and entertainment’s district, not just Theatreland  – just all of it used to be my favourite place to be).

Those things, I try not to think about though.

This picture reminds me to think about those things that I can do, to focus on those “Silver Lining” things, where I can do things I actually enjoy. That even if I can’t go to work and do the things that I really loved to do (and get paid for it), there are other things that are just as fun.

Right now, a huge shining Silver Lining is being completely available to watch Wimbledon in its entirety. I’m most certainly enjoying that. Especially when playing ESO (Elder Scrolls Online) at the same time – talk about cool beans…! For two weeks, I’m certainly going to be a little bit happier (so long as Andy Murray toes the line and gets himself to the Final!), because I’m not going to want to do anything else or go anywhere while they’re playing. All those summers I wished for it, I’m going to be all over it now.

It’s not only about focusing on strengths. It’s about learning to just take it as it comes and make the best of it. That whole “make do and mend” attitude is important when you have pain, when you have chronic illnesses, and when you have an uncertain future.

All you have is now.

The best thing to do is to “make do and mend”. You can’t change it, so focus what what you can do, and make sure it something you enjoy.

Now is all you have. You may as well enjoy what you can when you can. If you have moments of nice, of peace, of fun, of enjoyment, of doing something valuable (to you or someone else)... those are all such positive things that will brighten your day and your mind. Your strength of mind.

And that is what focusing on your strengths is all about.

Being positive. Staying Strong. Getting Through.

 


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.

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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


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