For days… weeks(?)… I’ve been unable to say words in writing. My head aches at the mere thought of making sense of my Feels enough to attach actual words to them…
Dailyos haven’t been filled in (will have to do them retrospectively… Somehow… Using this log…). Even this Journey Journal hasn’t been used for anything much more than a LogBook.
I’ve found this to be a Notably Reliable Indicator of Depression. Not the bad kind… No. The Really, Really, BadlyFucked Up Kind.
What’s been happening over the past few weeks, along with the God-Awful bitter hopelessness of recent times, is ensuring my brain is being cemented into the Wonderland of my Mind… And it seems I am, once again, being packed up and flung down that Rabbit Hole, ready to be destroyed and torn to pieces all over again.
Chaos. Fatigue. Exhaustion. Grief. Confusion. The inability to process complicated Emotional Feels. Not enough time to process Complex Emotional Feels. It all just builds up and up and up, until I’m so completely and entirely overwhelmed…
I am done in… Distressed. Frustrated. Overwhelmed. Frightened. Anxious. Wound Up. Agitated.
I fear sleeping again. I’m not even sure if I know why…
I am am in such a physical mess… And not just the Fibro. Not being able to wash my body, or my hair, or engage in any proper self-care at all is heartbreaking. But it also has an actual knock-on affect in so many other ways, too. You cannwot get properly cleaned with wet wipes. You don’t get properly washed to prevent catheter infections. Taking all your clothes off properly means that heat rash, allergens, creams and oils, groom and backside areas get properly washed, rinsed and sluiced.
I need to get some kind of grip on it… Quickly. Before it become next to impossible to wrangle The Beast back without an all-out war…
I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.
Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.
This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!
The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.
Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.
As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…”etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.
It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.
This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.
What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.
Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.
I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤
I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.
No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.
Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨
In other words, we can’t just manifest crap because we prefer it.
If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤
I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..
Maybe it’s the ASD. Maybe it’s just (or/and) Alexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?
What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.
So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?
Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.
To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.
I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.
I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.
I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.
I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.
It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.
There really is only so much that a person can take… and I passed my limit a long time ago.
A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…
I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦
The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜
I think I may have some understanding of the awful situation you’re having to deal with — I have had Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟
As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.
Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.
I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.
The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….
Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…
The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.
It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.
I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?
I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERYwhite-hot terrified and desperate you really feel inside.
Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.
The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.
Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.
The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.
I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?
Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.
I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.
I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.
When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill. I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.
It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.
No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…
It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?
Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.
Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.
It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…
The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.
I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.
It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.
I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…
Sometimes I just don’t have any words… We go to people, to professionals, trust these people… and then just how do they end up doing not only absolutely nothing to help you, they actually victimise you instead?
So, you – the person who is ill, disabled, in pain, vulnerable – need all these professionals to help you: Doctors, nurses, specialists, clinicians, physiotherapists, Ocupational Therapists, private healthcare providers, welfare department… And then so many of them just do nothing but let you down over and over again.
There’s DWP. PIP. NHS. Social Care. Specialists. Ableworld.
They’re all terrible.
And who would have thought that the people you paid for assiststance is the one that is victimisiting you the most?
First, the Ableworld Specialist Rep came out and did a rubbish job, only found out when they sent me the bill, with only a small amount of details. The details were incorrect and I was billed for things I didn’t want or need – she had made the decision of what I wanted for a lot of things for me without even asking. If she did ask, it was only for basic aesthetic things, and I still can’t get over the fact she billed me for £450 carbon wheels by only asking if I liked black wheels. No mention of the price.
I had to drag her back a second time to fix things. She still got things wrong. I told her several times the measurements for the seats were wrong and she bullied me into accepting it. The wheels were too far back, legs too far forward. I didn’t even get to see what the measuments she was writing down were. I never saw the prescription, only received an email stating the basic things that were paid for. Nothing more.
It wasn’t suitable and it’s given me serious ongoing, possibly permenant pain. Funnily enough, the sales-centric Rep cared not for my pain and basically ignored me.
I tried calling. I tried everything sensible to get something done about it to change it. It was hurting me, making my conditions worse. It was creating extensive paraesthesia and numbness in both hands, and causing problems with my knees, where the seat was pressing right into the backs of my knees and calves because it was too long. My back wasn’t properly supported, my feet were not under my knees and forward, and the wheels were too far back to be of any use, especially with backwheeling and getting myself up curb-sides. I needed it fixed before the problems were permenant. For some reason, they really weren’t interested in helping fix the problem they had created.
So… I lodged a complaint to get something done. Instead, though, I ended up with a really stroppy email from the Managing Director refusing all further assistance, insisting instead on forcing a refund on me, and then charging me to rent back the chair for £50 per week until I could get a replacement. This was given to me on Thursday afternoon, and expected this to go ahead on Monday.
Of all the goddamn gall!! 😲😳😤
So now I’m looking at what I can do. But what can I do…?
They’re trying to tie my hands and seem to want to cause as much pain and torment as possible. I’ve become more ill from all this – and I thought dealing with PIP was bad enough… except I paid these people a heck of a lot of money to help me and they screwed me six ways from Sunday. I’m distraught. Disgusted. Horrified. Stunned. Quite frankly, I feel sickened and ill from it. And the stress levels is really making things worse, too.
I’ve been trying all evening and night to devise a plan of action. What to do about things, about the best way to handle this. I have ideas… but whether they’ll pan out is a whole different thing. I’m trying to work out what to do about all of this… and no option so far is looking too great. It’s more of a make the best of it situation (I believe that means to take what is available and see what positives may come… I think).
Tomorrow, I have to get the rest of the data I need to do what I need to do about this, and then get back to the numpty who’s done this to me with whatever I have to say to him.
We are the vulnerable. The ill. The Disabled. They’re supposed to be there to look after us. To guide us. To help us. Not screw us over and abandon us.
But that’s what they do. Because they’re all people who don’t know what it’s like.
It’s come to the point of I’m getting scared of what’s going to happen to me next. How much the people out there who are supposed to help you are not only just going to ignore you, but they’re going to kick you in the nuts when you’re down, too. With Jibgle Bells on their toes.
Two bad things happened today, and I’m wondering how much more shambles there’s going to be in out beloved Health & Social “Care” system before most of this place falls apart because no one can get the help they need to be even vaguely productive. Or even alive.
The DWP are even worse than a joke… It’s almost like they’re in the business of causing as much suffering as possible. Constantly, consistently, and completely.
I have tried and I can’t find anyone else quite like me… and it seems that because I’m quite unique everyone wants to put me down. Even downright lie.
Today I got the PIP assessment outcome. Turns out that they give with one hand and take with the other.
Firstly, I finally got the “Higher Mobility” component – lets get the one single good thing out of the way.
Secondly, it turns out they lied outright on some of the “Daily Living” parts, leaving me with the same “Standard Daily Living” Component. I know this because I called the guy who looked at the case and made his decision. He explained what “evidence” he had been given by the person I saw… and it turns out they omitted some things and downright lied on others. They hadn’t listened. Clearly rushed the report. Missed giving them vital evidence and letters. Misheard or misreported what I had told her (how the hell am I supposed to be able to be able to still code and do my own sites etc “competently” or game when I’m like this???!). She even missed giving them verbal communication and somehow “saw” I had “good” dexterity – whatever hands she actually saw, I totally want them instead! 😤😡
In hindsight, she was all “Oh I’ll do this right now for you so it’s all done and with them”… and ergo clearly rushed it and did not do a good enough job at all. Or she was just mean. Either way, I got screwed.
When I called, at least the guy on the other end was willing to put me into the first stage of Appeal (some sort of re-review). He stated he would send me a copy of the main report, and I was to note my responses to them and why they were wrong. I was also to send a copy of the letter from the neurologist regarding the Hemiplegic Migraine diagnosis.
You know why…??
Because that inebriate I saw negated to send the diagnosis letter I gave her or mention it whatsoever. At all. It wasn’t even in the notes. We talked extensively about it.
So I’m hopping harder than a bag of frogs, and as pretty furious as my emotions will allow me to be without going into meltdown.
Now… You’d think the horrible would stop there. But, oh no. This is my life we’re talking about. Sod and his Law wasn’t done with me yet…
Next, the letter that came with the PIP letter today was from a stock and repair centre for basic mobility. I was wondering why they had sent me what could possibly me the least specific, least helpful letter ever.
I understand from our Approvved Repairer that they have not been successful in contacting you to arrange an appointment to either deliver/collect/repair equipment etc., [sic]
I hall be most greatful if you will contact [them] to agree a mutually convenient deliver date and time.
I had no idea what it was about… Who the hell would? So of course I rang them. And the frogs swallowed a Tigger and they started hopping to the roof.
I had never been contacted by these people before, so what the hell were they talking about? Well, it turns out it was for a wheelchair. Some off-the-peg piece of crap they had probably dug out of the back room. You may be unsurprised to hear that was not the agreement nor what I requested whatsoever.
I had asked the physio (a wet blanket if I ever saw one…) to be referred to ALAC (Artificial Limb & Appliance Service) of Wales (based in Wrexham around here) to be assessed for a proper wheelchair for my long term needs. What do they do instead? They don’t even contact me, sending some nightmare chair to their distribution and delivery centre without even talking to me first… I cannot explain just how bad and unprofessional that is.
Let’s just say if that was a professional private company, they’d have their ass handed to them via the serious complaints system of the corporation. My mother is still a professional nurse in a care home, works with them all the time, and even when I told her, her reaction was… “What?? Why?!” It was three ways from Sunday deplorable. And of course I told the service centre guys to send it the hell back.
My reaction was absolute astounded horror. Actually, that doesn’t even cover it, but it’s the closest the English Language has, I think. I couldn’t even think or move (well, as much as I might be able to anyway). It was a good thing my father was home. He helped calm me, then I spoke to my mam at work so she could give me some decent jargon to throw back at them. But when I was all ready to go, no one even answered the phone. All I got was voicemail. Frickin voicemail. On a Friday early afternoon. Talk about a message of “bugger off and don’t spoil my weekend”…
Thus I sent them a rather lecturing and detailed email. With big words. Well, they asked for it, the buggers.
I’m already struggling with my own current wheelchair (do not ever go toAbleworld Specialist Department – they’re rediculous and pathetic, and I wish I had never, ever chosen them to get my chair though… They do not know what they’re doing 😤 They ruined my chair measurements and centre of gravity, got fittings wrong, and did not give me what I asked of them… And now they’re arguing with me about it!! 😲 ). I did not need all this as well. In this country [Wales] they are not taking disabilities, ASD, or chronic illness seriously at all (except for a few professional individuals). I’m 36 and struggling. I should not be struggling, illness and ASD or not. It’s not right or fair or even logical to stop people reaching their potential because you just get in their way.
… My answer is what I have come to call The Queen of Darkness. With age I realised that this part of my Aspie (as I know it to be now) took over and just barrel-rolled over everything and everyone in her way. Darkness is her home. Bad things are her air. She fixes the wrong and doesn’t take crap from people. She [I] made it clear that “no” was not an option. That walking over her was not an option. That being an idiot wasn’t an option. It’s something that came out of me through necessity to survive my later teen years and 20s. Then… “She” disappeared.
Perhaps because that part of me was no longer needed. However, now it seems that she needs to return. So I guess someone’s going to have to put her Big Girl Panties on and get serious with people and life again. Otherwise I’m never going to get anywhere.
If there’s people out there who can lie and rig the system to the point they can defraud the DWP for years, there is most certainly a way to package the truth to also get what I require to help me live my life. To save my life. To get the same thing, but for real reasons. It’s certainly not right that I struggle so much, and these struggles get pushed under the carpet by the PIP people without another care in the world, as if they – if I – do not matter.
So… today is the last day before my PIP re-assessment. Needless to say I’m terrified and freaked out.
They’re not nice people, and their job is to try and find ways of undermining your suffering to make sure they don’t have to give you money to live on.
Thus, I am not looking forward to it. Funny that.
Today has already been a nightmare without even factoring in that hovering over my head like a black cloud on Eyore. The isobars have been on the floor again (1007mb) and I could barely move my fingers, let alone myself. It was a big struggle, and although I am glad I got some things done, I am not pleased that I did it. It was really difficult, painful and completely draining.
It wasn’t even anything big… Well, it was to me, given the weather (torrential rain and chilly), but in and of itself it wasn’t big. I was barely able to get out of bed, or downstairs to my chair, or function. So doing this did feel like a huge mountain to climb.
I was in constant panic attacks and major anxiety (and I still am – my mother, a nurse, came up with a clever way of helping me by emulating the paper-bag trick but using my inhaler – taking it without actually using the pump… it works!). Eventually, I managed to get myself together enough to go out to the new Waitrose in Chester, so I could get some good food to get more nutrition and look after myself better. The place was great and I got some lovely things, including fruit to go in my new Purition protein smoothies. Now I’ll at least have an entire week of nothing but good, wholesome and nutritious food, with my new mountain of fruit and veggies from there.
Unfortunately, it was also extraordinarily exhausting to do this, and by the time I got home I couldn’t even function: I could barely transfer from the car to the chair, I fell when I went to the bathroom, and I had multiple panic attacks. I have no doubt I will not be going to sleep at a reasonable (as in before 6am…) hour – although I can’t imagine what I am going to be doing with myself now. I’d like to think it would be playing games, but I can’t see it somehow…
On the up side, I finally got the Mass Effect Andromeda Loot Crate that I pre-ordered back in March… And it was well worth the wait!
A Gorgeous Pathfinder hoodie
2 lovely plastic children’s(esque) cereal bowls emblazed with the Mass Effect Andromeda Cereal logo around it (especially for geeks!)
2 gorgeaous, heavy (real) whiskey glasses embossed with the logo of the Nexus’ club, Vortex
An adorable model of the Nomad
An Andromeda Initiative Medalian Coin (huge and heavy!)
A Pathfinder Patch
Pins of Tempest and Andromeda Initiative
A [short] Dark Horse graphic novel: Mass Effect Discovery #1
A Normandy Datapad-shaped card with all the details of the Crate on it
I was amazed by it – it was really so nerdy! Worth the wait and the price. I’ve no doubt I will be hiding that hoodie as soon as winter comes! 😋🤓😎
And now… Well, I just wait. Wait to go and face the guillotine that is Capita, PIP [Mis-] Representatives.
The chair came – and such a good thing it did too.
Today I really, really needed it – and found out how much freedom and indipencdance it really does bring,
Firstly, on 30th June 2017, Lou[ise] from Ableworld came around 12:30pm and made sure it fitted, showed how it all worked, all the little neuonces to it. Then it was all mine.
I went to Penrhyn Castle first (it is not suitable for wheelchair access at all!). It was only because of this thing I was able to enjoy it – or get into it! – at all. Yesterday (the next day), I spent the afternoon/evening out in the local town with a friend I hadn’t spent any proper time with for years, not since I became ill. I pushed myself the entire time, and it’s a very difficult place to generally manage.
I’ve never been able to indipendantly manouvre around this place single-handedly before. I was quite amazed I had managed. First we went to Starbucks, and walked all the way to the other end of the long high street on a rather steep hill, all the way up to my favourite pizza restaurant. We had pizza and cocktails at Johnny Dough’s and really enjoyed ourselves. It was a lovely day out, much like the ones we used to enjoy back in London, and I was so relieved to have a “normal” day out for once.
However, that elation came to a crashing halt today. After passing out from a Fibro flareup in the night, about 11:30pm, I awoke around 3:30am and barely [physically] made it into bed. I ended up unable to sleep after that, eventually going out again about maybe 5am. No more than two hours later, my mother woke me up to tell me my father (my main day carer) was violently ill during that night, throwing up. She had prepared my teas and my meds, leaving them there for me next to some coffee (which I drink mainly cold in the morning) for when I did wake up. I wasn’t happy, but I allowed myself to go out again.
At 9:25am my usual meds alarm went off and I managed to take them with a bottle of water also left for me. I immediately went out again, only coming round properly at around 1:30pm. I was woozy, disorientated, confused, afraid, and my eyes were glued up by about three layers of mascara still on my face from the day before (having never taking it off due to passing out). I had no one else to turn to – I rang my sister to help me orientate myself and help me from feeling scared and confused. Bless her, she spent about half an hour with me over the phone, chatting, discussing, telling me about the renovations on her new house, and what she was up to.
By the time she had to go, I had managed to consume most of my teas and felt clearer-headed. I then had to work out what on earth I was going to be able to do with myself. I couldn’t feel my legs – there had been no one to help me with massaging (I don’t have the strength to do it myself, more’s the pity), nor used my essential oil massage oils on me (I couldn’t find the morning one, and could barely move to do so). It was then I remembered the chair downstairs. It was to be my saviour.
I managed to drag myself to get my canvas tote that I keep my things in, and put my phone and iPad in. I subsequently had no choice but to then place it around my neck and drag myself to the stairlift. I managed to get up into it and took myself downstairs. The wheelchair was left folded in front of where the stairlift comes to an end, so the transfer was easy. And once in… I was free to do whatever I wanted to do. Which was mainly to go to the bathroom, frankly.
Without this chair, I would have been screwed today – even something as simple as going to the bathroom would have been a nightmare. Food would not have been an option, that’s for sure.
I took myself to the lounge after and entertained myself in there, mainly talking to my friend over Facebook Messanger app, and nosing about online, whilst watching on demand TV. I struggled to make myself food later, around 3:30 or 4pm, and dropped some of it on the floor. I could barely manage to eat the rest I was so upset, and I made some more replacement side dish after I stopped crying. I had to stay in the kitchen to eat, which I didn’t like (it’s far too bright in there, with no blinds), but after all my struggles I got my dinner in the end, and returned to the lounge to watch (don’t laugh) Ben Affleck’s Ant-Man.
After feeling terrible about losing so much independence again, being unable to manage to do things like make food without a farracas, I had (gluten free, dairy free) ice cream. Then I got out my new seated dancing DVD and proceeded to try and cheer myself up.
The Smile and Sway DVD looks like it might be a strange and over-enthusiastic attempt at making ballroom dancing fun… but it’s far more than that. It’s 40 minutes of dancing fun, from ballroom favourites of Tango, Foxtrot, and the Cha Cha Cha, to Big Band and Jazz Hands, via the Jive to a little ballet-esque technique, this is a lovely doorway into a world I thought was no longer for me. To be back in a world of fun dance routines, Fosse-style moves, ballet arms, “Big” arms, and “Big” moves… it was a relief to be engrossed into something I had missed so much, and that was so familiar to me.
It wasn’t all so great: I missed my medication time by over an hour, but luckily there was some downstairs. I had been unable to make my teas, or even any coffee (I can’t hold nor lift the kettle), and had to rely on wine to keep my mounting paraesthesia at bay (I don’t know what it switches off, but it does the trick when necessary). I kept banging into things, and knocking paint off the skirting boards. I had to wait for my mam to come back from work to have some dinner. I ended up watching Big Bang Theory and felt a little sad again about not being able to manage things myself. Apparently I also even somehow managed to burn my hand a little… I didn’t notice until I noticed the red burn mark on my finger just before I went to bed.
I’m glad to be upstairs, but that also comes with the fact that getting to the bathroom is going to be very difficult. I’ve so far spent hours and hours avoiding it, but I don’t think I will be able to manage putting it off much longer (it’s actually 3:30am now…), and I’m going to have to take up all my strength, courage and will and face the horrid and difficult struggle to get there and back.
My father is also still ill, so there’s a very good chance that I shall be facing the same kind of day tomorrow. This time a few more things will hopefully put in place, and I’ve already had the traumatic practice-run today.
Over-enthusiastic Gamer, Goth, Geek, Techaholic, Dabbling Writer & Blogger, and Raging Coffeeholic ~
Loves Gadgets, Games, Tech... And Coffee. Lots and lots of coffee.
~ Obsessively-loving: Dragon Age Series, Mass Effect Triligy, The Witcher Games, Skyrim Special Edition, Elder Scrolls Online, Divinity: Original Sin Series (amongst others!) ~
~ Self-Built Gaming Rig: i7-4970K, 16GB RAM, 128GB SSD, 1TB + 3TB HDD Storage, GTX 1070 8GB OC, 1150 ASUS Z97-A ATX mobo, Windows 10
... Oh, and did I mention I love coffee...?
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