Tag Archives: hope

Anniversary of Hell…

Today is the anniversary of when I first was taken into hospital

On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.

Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖

My brain is trying to process it, rather unsuccessfully, to be honest.

However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.

To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯

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Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?


Freedom To Sense Senses

These have recently become my new best friends…

 

41XjdqaAdgL._AC_UL480_SR480,480_      *      *     *      Leg Weights_Pineapple

The reason: The ability to now have better peripheral orientation and physical awareness. Part of me hopes they might also help tone my arms and legs… but I couldn’t care less if they don’t. With these, I know where my arms and legs are, and I know how to use them again.

 

First of all – it’s complicated. I am complicated. In having both Fibromyalgia and Asperger Syndrome (ASD), there have been many complications, and this has been one of the major ways they have conflicted against each other.

First of all, I’ll start from the beginning: From a child I was not the most active but enjoyed things that required muscle co-ordination and strengthening – country walking (hills, streams, caves, etc.), clambering (no heights), `then onto horse riding, yoga, singing, dance and city walking as I got older. All of these have one thing in common – strengthening muscle control and balance. Quite instinctively, I was clearly drawn to things that combated my (what is now very clear) problem with orientation and physical awareness.

Unfortunately, the Fibromyalgia hit. The pain endured meant I very quickly did less and less as the pain level rose inside me. Eventually, all that work I had done was lost. All muscle tone, strength, control was gone – and my “problem” was uncovered… but without actually knowing I had ASD and sensory issues, or that I required “sensory diet” assistance, I was lost, scared and frustrated. Even after diagnosis, it took a further two years to discover sensory issues and about the Sensory Diet.

When I found out about it, I did more research and thought about all the things that has assisted me in the past, when I was most “stable”. First I remembered my love of corsetry and giant Goth boots – in those I had felt the most confident and happy in myself, so much so I used to wear them almost all the time – so I got them again, to help me now:

 

black_brocade_steampunk_corset_1_16_1-thumb_1  Demonia Skull Boots

    

 

However, I realised I needed far more than that, because you can’t wear them all the time – corsets really shouldn’t be worn for extensive periods, and boots usually get taken off when indoors, or at least when you want to sit on your bed/beanbag and write/use PC, etc. I thought long and hard and came up with nothing… until one fluke recommendation email from Amazon turned up in my inbox: It had hand and leg weights in it. It was then I realised this was my answer – perhaps recreating the weight of the boots would help.

 

Difference:

When I put them on, the difference was so astounding I couldn’t even describe it. It genuinely felt like I had been “plugged into” myself again. I was aware of what my hands and legs were really doing for the first time since I became ill, able to control fine motor skills “automatically”, instinctively, and able to move in a more natural way. Able to type almost as well as before, able to walk without falling over my own feet. I stopped being clumsy and dropping things. Just like I had been able to walk and move better with my big boots on, these worked in exactly the same way. It was quite incredible.

There was another “side-effect” from this – my focus, calm, control,  outlook, all became clearer, and far more under my control. I was even able to control my response to the pain better, hence able to endure more, to block out more, thus being able to do things a little easier, and a little more than I could before.

Ever since I found this “Sensory Diet” I did not have a major meltdown for over a month. They were more controlled. Shorter. Less devastating. Slightly less exhausting. I had mini-meltdowns, but they were controlled fairly well, did not escalate. With the weights, the situation is even more controlled, and even mini-meltdowns have been shorter and require a few quiet minutes of deep breathing to assist the “buzzing” or “chaos” in my head dissipate. I had one big meltdown, but the circumstances were quite exceptional.

With the weights, I have been able to cope with situations, with pain, with things that usually caused huge meltdowns that I could not have managed before. I have been able to manage more, play my games, watch TV or movies I otherwise wouldn’t have been able to watch, able to read and write more, finding new books, or having better or different ideas … having any ideas at all, in fact.

I went to Caernarfon, walking with my 4-wheel X-Folding Walker, in a corset, my big boots (as above), my weights, and Doggy (Soul). I managed (with many, many rest stops) to walk around, deal with the pain, and even walked across what I deemed to be a very scary bridge without even thinking about it – until my father pointed out to me that usually I would never have crossed it. I wasn’t even aware that I really had. I just wanted to see what was on the other side of the river, so I went. I never even thought about the bridge, and gave it no consideration whatsoever. It was a huge breakthrough.

Yesterday, I went to see a new (used) car that my father is getting to replace his 30 year old campervan. He had found a beautiful Suzuki 4×4 that was built like a small tank and had plenty of room for all my gear and the dog, as well as the rest of us. It also meant that, given we lived in the middle of Snowdonia, we would have a more reliable car in all weather that we can get up here (floods, ice, snow, torrential rain, etc.), and we would be not only safer, but able to drive into places we might not otherwise be able to get to up here in the mountains. It was a beautiful car, and an automatic. In other words, it had potential for me to drive it.

I sat in the driver seat. The transfer from my chair into the car was ridiculously easy (compared to my experience trying to get into other cars), particularly helped by the footrail under the doors, and handles over the doors. Then there were the seats in that car – they could all have been especially made for me, from my own specifications. They were pure “Goldilocks” seats: Quite perfect. The right height, just hard enough, just supportive enough, just comfortable enough, the contours just in the way I needed them to support my back and legs. I had my arm weights and big boots on – and when I sat in the driving seat I felt like I could have just put that car in gear and driven off, without a hitch or problem. I knew and remembered exactly what to do – something I never thought would actually happen to me again (though others were rather more optimistic for me – turns out they were right… damn it!).

This meant that now I really, truly might have the opportunity to “learn” to drive again – as in slowly get used to being in control of a car… and an automatic one at that (I’ve always driven manuals). I have forgotten nothing about how to actually drive one. Driving was a dream of mine when little, and the day I passed my test was one of the best days of my life that I will never forget. It’s always been therapeutic – you have to focus on the road, so helps keep my mind in a calmer state… everything fades to nothing when there’s a road ahead of me, and perspective returns. Not being able to drive has been as torturous as not being able to sing – they make a huge difference my emotional and psychological health. The ability to drive again would make an enormous difference to me, my life, and my independence… which is what I have needed since I became ill with this thing.

All I want is to be is in control of my conditions, work with them, and have all of us work together as one, not against each other, leaving me in a ball on the floor, crying and in agony. The weights go an enormous way towards achieving this goal – they have allowed me to gain control of myself, and my physical awareness. There is a possibility now they will be able to assist me to focus enough to read, learn, code, write, play my games, and even drive again.

I should ask for it to go, but I don’t. What I ask for – what I’m looking for – is to simply be able to live a fairly enjoyable existence with these conditions. I’m quite happy to compromise with them and play ball, as long as I’ve been given the tools to do so. Now I’m getting closer to this. If I am able to drive, even a little, and with company, then I have one more extra tool to cope with my situation and one more thing to enjoy.

 

On The Other Hand…

There is a flip-side to all of this – one that most people would probably not understand:

Change is bad. I have ASD – it doesn’t matter whether or not that change is good or not, change is bad. With time I get used to the positive or negative inclination of the change, but the actual change itself is bad. Traumatic. Frightening.

The initial change, when Fibromyalgia hit, it was traumatic. When I lost everything, it was traumatic. When I had to leave London to live in the Snowdonia Valley, it was traumatic. But now that things are stabilising… I’m also finding it disconcerting, if not quite traumatic (…yet?). And like I said, it does not matter whether good or bad, these things are difficult to cope with.

So far, the changes have been slow to come – in drips. Luckily. They’re more unnerving than a shocking trauma because of the slow and steady exposure to them. Since I’ve been dumped here, recovery – or, at least, acceptance and acclimatising – has been slow and excruciatingly difficult. Stabilisation has been slow in coming. Learning curves have been steep, difficult and painful. In some ways, the things that have come back have been so natural, it has been comforting to have them returned, rather than seeing them as a change. Those are the good ones that makes life easier and more positive – I can do things naturally and normally without having to think about it (having to think about it actually physically hurts my head). This frees up space in my mind for other things that it should do, like learning, reading, playing, relaxing. Even space to cope with pain and “buzzing” that causes meltdowns.

The hope for the future grows… and with it comes the possibility that such a thing may be a destabilising factor. I’m trying to keep this in mind and ensure that changes in anything comes as paced as possbile, so I can deal with them. If too many happen at once, they can cause quite a reaction from being too overwhelmed by them all. Now I have weights and the car come almost at once… now things require pacing otherwise they’ll become too much and be detrimiental, regardless of how positive everyone else might think things are. An overload is easy to create, and I want to do everything I can to try and avoid such a situation – I do not wish to take too many steps backwards after working so hard to ensure my conditions are stabilising into a workable model.

 


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
 


Keep Hope & Carry On

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

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

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

 

Why Really Bother?

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

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

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

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

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

 

Living In Another World

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

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

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

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

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

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

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

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

 

My Own Light of “Hope”

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

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

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

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

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

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

 


Lost

Fragmented… Scattered… Chaotic…

 

Hell.

 

It feels like the hard drive in my head has had its entire system wiped by a virus. Another nervous breakdown, another existence of knowing nothing. It’s like everything that was before is gone. I have no inclination anymore of how to be, how to live, how to do the most basic things in life of existence. It was never easy before, but I stumbled along and did my best — but whatever I learned then seems to have gone. Wiped away by the virus embedded into my code. Code I have no idea how to re-write. I certainly have no idea how to restore it, or if that is even possible.

 

As always, I can do nothing right. No one wants to be around me and my “insanity”. They don’t understand that I just don’t understand. That I literally don’t understand anything. I’m smart, yet it’s like I can’t do anything that’s simple. Those same people then wonder why I keep to myself and write or play games. They blame me for not being interactive… But how can I? I don’t know how to. I don’t understand what people are saying or what they’re doing, what is expected of me, or how I’m supposed to respond — it’s like they’re speaking a foreign language, behaving in a foreign way and I don’t understand their strange custom Despite the fact I want to learn all about it, they don’t want to teach me. They resent the fact I don’t instinctively know. They just think that I should just know it, and that’s that. As if they would think it were that easy, if they were dumped in the middle of Japan and yelled at for not being completely fluent in the language and sociology of a radically different country.

 

Simplistically speaking, I feel like I’ve gone from having a badly designed and glitchy OS (think MS Windows Vista or 2000…) with lots and lots of basic patch-fixes that basically do the job just about, to having everything wiped from it altogether. A nervous breakdown, acting like a virus, has come in and simply imploded my brain, and essentially wiped everything from it. No backups, nothing. There’s nothing left except a very basic Safe Boot which barely functions. It wasn’t like I was doing all that well before — it was always difficult to manage to just be alive, to live, to pretend to be normal. I hardly managed all that well to begin with, but I struggled by… Just about. But now… Now I’m reduced to nothing. Nothing but tears and loneliness.

 

I have no outside help, and the tiny handful of people close to me are no longer interested. Just angry and resentful. Hateful. Nasty. Impatient. Cruel. As they have always been. I have always been the one on the outside — blamed, sent away, thrown at so-called professionals (the useless gits that they were) to try and “fix” me. Of course they didn’t. They just labelled me and gave me medication in the hope that I would go away. Only it’s 20-odd years later and here I still am — only worse. Still self-harming, suicidal, and amazed I’m still here. On willpower alone, because I sure as hell am not getting any professional help. I’m sure the waiting lists only exist to try and see how many survive long enough to get the help they require… To see how many throw themselves off bridges in desolate desperation to escape the horrific hell of their existence…

 

I say existence because this is not living. It is not living to be frightened of everything, to be confused and overwhelmed by the simplest things, to have a complete breakdown by the smallest things that completely terrify you. It is not living to have severe depression, crippling agoraphobia, constant terror, social phobia, awful chronic pain, people who are supposed to be your family being resentful and hateful to you, people who were supposed to be your friend vanishing because they don’t understand. It is a hell that was never supposed to be on earth. One I want to stop, and one I’m getting weaker and weaker to the power of making it stop. I’m not sure how long I will have the ability to say no to the lure of the amassed pills that I have to deal with my incessant pain. I don’t want to… but how long can someone live like this without hope?

 

I don’t want to be like this. I want to get back all that information I lost. Like having to re-code all that data again… Not that it was much good in the first place. It was a basic, ill-written and glitchy set of patch-fixes on a crappy system. It’s probably best I pretty much have to start from scratch, but no one wants to help. I need the correct data, and they won’t provide it. Instead, they get angry, frustrated, horrible, tell me they hate me and want rid of me — because they don’t understand. They always come back at me with: why don’t you know this already? I can’t deal with all your crazy shit — all your questions, I can’t answer them! Leave me alone before you make me go crazy too — sucking me into your mad world!… Well… Why is it OK for them to be left alone and not me? Why can’t I know what they know, and why won’t anyone explain? Why won’t they tell me and let me be like them? Why should I be left like this, when all I want to do is learn how to be like them and live in this heartless, cold, and confusing world?

 

I need relevant data to be able to process and analyse things — with the relevant data, I can start putting together whatever I need to “code” the correct responses to things. With the right help, I could do this. Using the right information, I would then be able to strategise what the best outcome would be for relevant situations, like I used to. No, this does not come naturally. That’s what I get asked. The answer is simply NO. I wish they would listen, accept, and understand. Throughout my entire life I have worked very hard to try and collate the relevant information to gauge the correct responses for given situations… It’s been a difficult and exhausting task, filled with immense fear and anxiety — especially since I rarely get the output right, because I’ve never really had the correct data. I have tried to emulate the best I could, but any gamer knows that an emulator is always a poor substitute for the real thing. It just doesn’t work as well, and is likely to fail and disappoint. Just like I always did.

 

The cold, hard fact is that I do not, and have never understood the world in any other way. Until I understand things intellectually, I essentially return an error code or a null result, which is not helpful, and it’s scary when you don’t know anything. Imagine waking from a coma with amnesia in a country you have never been in, and with everyone yelling at you for not knowing anything, for being stupid and pathetic and asking questions because you just don’t know — you don’t know where to go, how to get there, how to behave, who to talk to, how to speak to people, how to interact or deal with things, how to understand their answers or what they mean… If you close your eyes and really imagine that for a moment… Now you have a good idea how how freaked out, terrified, overwhelmed, and confused I feel. Except I feel that I’m not in the wrong country — more like I’m on the wrong planet. I don’t understand people, and they don’t understand me. And no one wants to help translate or navigate this strange world, either. So I’m on my own — and slowly, it’s killing me.

 

I am severely depressed, frightened, need help… but all I’m getting is the backlash from people  I thought cared about me, who just say I’m crazy and yell at me a lot. Resent me. Hate me. They want me to somehow magically understand everything on their terms, and give me nothing in return. What about my terms? How come I do not get any say in this? Why am I the one jumping through everyone else’s hoops? They don’t want to understand me or help me. In fact, they don’t want me to be me at all. They just want me “fixed”, as if I’m some kind of problem. My whole life, it’s been made abundantly clear to me that it’s not OK to be me, and then they wonder why I just keep to myself and don’t want to have anything to do with anyone else.

 

The chaos of it all makes the screaming in my head never stop… Like white noise, static, or maybe a huge crowded room filled with the loud hum of talking people— it’s just noise, like screaming, screeching, random chaos that makes me melt-down completely into a complete wreck, begging for the chaos and screaming to stop. Normal noises seem echoing, piercing, echoing through my head, through the chaotic noise, making it worse. I even seem to hallucinate awful smells… It’s like my brain has completely lost all ability to process everything. A CPU meltdown with little processing power left, let alone parallel processing. I can’t even do something, any activity, and talk at the same time — to be honest, talking at all is difficult… it’s like all the words have gone from my brain (although when I’m writing I have no such difficulty).

 

I’m scared. Confused. Vulnerable. On top of all this I’m also in immense physical pain from something I am unaware of. Whatever it is that is causing it, it is something that is making my existence excruciating. It is this pain that finally forced the breakdown… the virus. It’s one thing trying to juggle this existence, running patch-fixes on everything and essentially holding it all together with own-brand value sticky-tape. It’s another thing when this screaming agony sears into your brain from every cell in your body from your head to your feet, one that never goes away and never gives you a break. Then there is nothing left of your brain after it implodes to deal with whatever ruins of it that is left.

 

I’m on waiting lists. That’s it. No help given to me whatsoever. Just put on waiting lists. I can’t even take helpful pain meds — I can’t have any that are of any use because my system reacts badly to them. Anti-inflammatory painkillers could make me haemorrhage, and strong opiates give me delusions and mild psychosis. Those that I do take give me nightmares, so I can’t take them within at least 4 hours of bedtime, so I can’t sleep either from the pain. The pain keeps me awake until the early hours of the morning, until I’m so exhausted I pass out. Which also can result in horrible nightmares too. So it’s all win-win, really…

 

I am at a loss as to what to do. I’ve lost my job, my life, my sanity, my hope, my friends, my family… I am alone, in pain, scared and confused. Six months this has been going on, and now it’s really getting to me — the hopelessness of it all is leading me down a path I never wanted to travel down again. The one of despair, hopelessness, and despondency is the worst and darkest to travel, and it is one you always walk alone. Loneliness is one of the worst things to feel, and right now I feel the loneliest I’ve felt in a very long time.

 


Being Ill Is My ID Card

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

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

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

*
Being A Raggydoll…

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

GrumpyBear

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

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

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

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

  * 
My ID Card?

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

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

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

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

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

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

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

Carry Me


Cold World, Cold Hearts

In these times where this government (or Satan’s minions – take your pick) state that people need to “come off long-term sick” and “go back to work”, I have found for myself that actually employers do not want people with long-term health issues on their employment list. In fact, I have just been “let go” because I am not well enough to do everything they require of my for the minuscule pittance they pay me.

This is despite the fact that I have gone to great lengths to try and continue to work the best I can, and (in a great irony) made myself more ill by going to work when I was really too ill to work, to help them with important reports so they would get done. If I hadn’t done that I would not have complicated my already fragile health. I had pneumonia (as well as other health issues). I went to work anyway because it was important to them to have these reports done, because there was no one else to do them. For 2 weeks I pushed myself until I literally couldn’t move. I struggled until I literally couldn’t get off the floor or out of bed on my own. I did it through a pointless sense of loyalty to an organisation who clearly didn’t care. Yesterday I received an email basically stating I was too ill to work for them, in their opinion. They didn’t want someone who was ill and struggling.

Oh, and did I mention they paid me pittance for this too? It’s the worse-paid job I’ve had in years. I took it because it was for – what I thought – was a worthy hospital. Is it irony when the NHS tells you you’re too sick to work for them?

I was working from home and in the last couple of weeks had the equivalent of 4 people’s jobs dumped on me – with no pay rise (and yes, it’s the worst-paid job I’ve had in several years and I wish I hadn’t taken it, because my outgoings went up considerably shortly after I started it). I struggled to go to work until I literally couldn’t move – emotionally blackmailed into it, because there was no one else who could do what I did. Everyone in my team had already abandoned this ship. It was just me left – and also my ex-boss who still had half a finger in his old role because he also left before they found someone else to do it instead.

To be honest – apart from the money thing – I’m rather relieved. The area I worked in was unravelling quickly and there was no proper organisation or management in place. My two bosses left with no substitute in place, leave me – a consultant (a temp) – alone to deal with everything (as well as the jobs of 2 other people too, on top of everything I was already doing). There was no longer any structure, training, organisation, or semblance of sense anywhere. I’m glad I will not require to carry any burden of responsibility for this – and I am certainly in no condition to do it now.

Between the pneumonia, my rather delicate condition before it came, and pushing myself to run a 3 hour round-trip commute after walking the dog for 2 hours and working for 6 hours each day for two weeks, I have now crashed and burned. Chronic pain that was almost durable before has now become unbearable. Stupidly strong painkillers finally dull the pain enough for me to walk about without crying. Before I got them, I couldn’t move without unbearable pain just taking my breath away, like I had been punched in the stomach. I can’t understand why I have this – after all these years, perhaps I will now find out (I’ve finally found a GP who’s willing to help me work it out), but what I do know is that it hasn’t made life worth living much. I am just lucky I have people, and a dog, in my life who are willing to help me.

Apparently, what I can’t do it work. My own (ex)boss told me that in no uncertain terms. When the idiots in government decide to penalise ill people for deciding “not” to work, they should probably check whether employers are willing to employ people who aren’t perfect. Who aren’t super-healthy. Who have medical conditions or disabilities that make life difficult. Business models in this country to not allow for people with health or disability issues to work in the capacity they are able to, and certainly not for liveable salaries. It’s not acceptable to work from home, Skype into meetings, or have the company/organisation help with things to make things easier – like cabs to work, which I cannot afford, but if offered I would then be able to get to work with no problems (I can’t travel by bus or train right now, thanks to the fact I can’t really walk far or for long, I cannot manage stairs, and I am unable to drive now).

If I didn’t have to do things like pay for stuff it wouldn’t be so bad. But unfortunately, shops tend to like you giving them money for their things. It makes life difficult when you don’t have any to give them. It usually means you can’t have things like food, which is unfortunate when they’re rather necessary.

Making ends meet was difficult enough as it was. Now, I really do not know how I will manage. This is not exactly a society that cares to look after its vulnerable people. I’m not exactly elated I seem to be one of them.

I can only hope somehow this is some way of changing things up in my life – foxing my hand and heart towards something that ends up being better for me that the path I was on. Perhaps that is wishful thinking – a false light in the dark. But since the alternative is giving into depression, I’d rather hang onto that. It’s a nicer thought that comes with hope. And without hope, there’s nothing.

 

Fall or Fly


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