Tag Archives: mobility problems

Independent Struggles

Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.

Yeh… It’s really not.

It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…

I’m certainly regretting being ill.

It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.

Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go  so the dog with shut up.

Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.

My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…

I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.

Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).

At least I made it to the bathroom after that, anyway. That’s definitely something very important!

I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.

So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…

I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well..  Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?

The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??

 

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Wheelchair Madness

Currently being annoyed by how difficult it is to sort out a proper wheelchair. The one I have is heavy, off-the-rack, and not fit for purpose. Not fit for pushing, or sitting in, or going where I want to go, like on basic country trails. It’s great for maybe an older person or less adventurous one who doesn’t want to walk the dog around a country park or Snowdonia lake… but it’s no longer for me. I need a proper active one… before I break the one I’ve got now. It’s already tried to break me… Now it’s time for a proper one.

Someone came to fit me for one… Privately, because I’ve been in this horrific mess for the last 3 ½ years and I’m done waiting. God knows how long the NHS would take… if I’m not dead of old age by then. It’s going to take long enough privately, I’d hate to think how much longer it would take waiting for the NHS to do it. I’m still waiting for everything else, so I’m not hopeful. Hence the private request for a quote.

The experience itself was good – I got to test the chair and talk through the options with the sales advisor… However, what that person did not do was tell me what the options cost. They made it sound like most of it was part of the package, like choosing the frame colour. But… no. Very, very, definitely… No.

Be very careful if you do this yourself, they’ll get you into things you don’t realise cost you a huge amount, but are unnecessary. Like Black wheels for nearly £450… I mean, seriously?? Identical ones in Silver are part of the deal – but they didn’t tell me that, and I don’t think I would have noticed if I hadn’t been an anal Aspie data analyst who noticed one mistake (no, not the price! – an actual mistake in the order list) and realised there was probably something larger afoot.

Thus, I downloaded their “Prescription Form” from the internet, printed it out, then did a cost analysis from what she had added to the list and what I really wanted and really needed. I went full me – data analysis mayhem and data analyst extraordinaire… and I did not like what I found. And I was dumbfounded by how much I didn‘t need. Or even want.

The difference was nearly a grand… over £800 was added to the “prescription” and bill when it wasn’t needed at all. Like the black wheels previously mentioned. Stuff that for £450! – Silver wheels (included), with a cool Spoke Guards for “just” £113, is a much better deal and use of the money. If you’re going to pay an inordinate amount of money for something – it better be what you really want and need… not frivolous trinkets that are unnecessary. I didn’t need fancy wheels, or “compact” breaks, or a fancy Sideguard with a logo sticker (well, OK, that one might be needed, I need to find out more about this “Cold-Resistant” part of it, given where I live…), nor a lapbelt, or fancy footplate of carbonfibre. None of it was necessary – and if I was going to pay nearly £500 for fancy wheels, it was going to be the damned mountain bike ones, not for having them in sodding black!

When I was finished re-evaluating what I needed and hacking apart what she had written down, I got a chair originally billed to me at £3,227 down to £2,422 (including the pretty spoke guards) – or £2,309 without them. The base price (this was for a Quickie Neon²) was £1,645… meaning they had managed to double the price for the first bill sent, which – given you’re dealing with vulnerable and disabled people with probably little income – is terrible. When I added up only the things I really wanted it was only approximately £600 more – a lot, but not double the original price.

Of course, this would be better paid by the NHS – and given the amount of money I’m saving them by paying for my own treatment in home-based Ayurvedic medicine, and how much NI I’ve paid over the years – they should be damned well paying for it. But how long will it take, leaving me stuck the way I am, struggling and feeling like a worthless sack of shite in a wheeled cage?

The Sales Assistant even pointed out that I would be eligible for the chair under NHS Wales, but after so long, I’m reluctant to even ask… PIP utterly refuse to believe I need one (I’m wheelchair reliant outside and barely walk indoors, but only get Standard mobility even after they sent me a re-assessment form back in late January… and that was only after an Tribunal appeal!), why should they be any different? I don’t trust any of them anymore… they all want to save money, not actually help people.

Disenfranchised

I admit that right now… I feel genuinely utterly worthless. I can barely walk. I have to use walkers to get around the house, and a wheelchair to go outside. When I’m in the wheelchair I feel like a little old biddy, all curled up and caged in. I feel pointless. Stupid. Old. Unnecessary. The walkers make me feel like I’m 105 – despite covering them with nerdy stickers. I can hardly do anything myself and I need virtually 24/7 physical and psychological care (which comes from my parents). I need help for everything I used to do myself… and I just wanted to be at least able to get myself around by myself. It wasn’t too bad… but then everything went even more wrong. Again.

Since my conditioned changed to Paraesthesia [Fibro/Hemiplegic] instead of normal unabating agony, I can’t sit in it nor push my chair. I had to buy a backrest for £45 for it, to use along with a sacrum cushion I already had, so I could just sit in it without having to endure 4 hours of spasms just from sitting in it a few minutes. My hands become numbed and extensive Paraesthesia starts in because it’s difficult to push the chair now. I can’t do what I used to do. It’s just soul-destroying.

I need this new chair so I can have some dignity and independence outside. When I sat in that prototype I felt like I was just me. Just me. No illness, no cage, do disability. Just some cool wheels for legs and the ability to push myself without much difficulty at all. I pushed myself outside all the way down the road here – something very difficult and I’d never done it before. I could have even gone further than I did and come back without much problems. The wheels just went. It pegged it with so little effort from me. It was unbelievable. I couldn’t stop smiling at how much fun it suddenly was to go for a “walk” again! I did it all by myself and I was elated.

So… you can see how important this is to me. Getting it right is important – and the only way I would have those optional extras would be if I wasn’t paying for it. Even then… some of them are entirely unnecessary… I absolutely prefer the Spoke Guards over pretty black wheels…!

The fact of the matter is that if we have to buy this ourselves, my parents will be putting themselves hugely out of pocket, and that kills me with guilt. On the other hand we all have to consider my psychological and physical well-being… it’s not good for anyone to be housebound and inactive when there is theoretically no need for it. I’m getting bigger because I can’t go out and burn energy – and the few exercises I can do at home aren’t really going to make me happy, whilst I’m busy missing practising proper, full yoga and Pilates. I want to walk my own dog, so visit places, maybe go on a small holiday to the Lake District or Glastonbury (where all the cool Wiccan stuff is). I want the confidence to go out with friends – and my parents – without feel like a burden. I want to feel like this thing doesn’t own me. Doesn’t keep me in a cage or in pain/Paraesthesia.

I want my freedom. That just shouldn’t be optional.

But just try telling Jeremy [H]unt that… and his other Tory numbnuts colleagues…

Disfranchised… It isn’t a fun place to be at all. I had so much… and now I have nothing. Not even my freedom.

But maybe… One day… Well, you never know.


Stairlift To Freedom


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.

 

 

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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…

 

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