Monthly Archives: August 2017

Continuing Saga of Un-AbleWorld…

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.

So now I’m off to see people who actually do. 

 

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Oh. Dead. Lord… I’m Surrounded By Idiots…!! 😣😱😤

I just don’t know what to think. Or how to properly identify or deal with these feelings… Incensed? Angry? Horrified? Hurt? Sad? Violated? Victimised? Traumatised? Grief-Stricken?

Who knows…? I certainly don’t.

The PIP Fiasco Continues still… I read the full case notes the unebelivably horrible woman I saw at PIP wrote… and it’s vile. And lies. And I literally cannot believe it. As in it’s unable to be fathomed.

After all her (turn out, disingenuous) pandering and “Oh dear!”s throughout, serious nodding, and looking very sympathetic, it turns out she was writing mainly made up crap and copying and pasting the same sentance over and over again. Typos were everywhere, the omitted “not”s in can not as well as the “un” in unable. She made it look like I was a step away from being perfectly fine and perfectly able to practically hack myself into the Pentagon… It was just such a load of crap it was rediculous.

She was in a rush when she wanted to write it up (quickly, of course…) and just made up crap about me. Withheld vital information, omitted context, and even didn’t acknowledge my mother was right there with me, helping me work out what she was saying, communicating my difficulties, backing me up. And she even spelt my mother’s name wrong, even as my mother spelled it for her. Astounding.

Incensed (I think), I spent four days creating a 25 page rebuke with long lectures about victimisation and outright lying and omitting relevant data. It was detailed, concise and at least true. Let them put it before a judge were they can see and make a decision themselves, with firsthand interaction with me. I’m much better off. I was last time, they kicked the PIP and DWP’s assess and gave me a monumental backpay.

It took them over 6 months to get me an appointment (4 months later than the maximum target they themselves have, very clearly stated on their own answer service). But because DWP will only pay backpay to when the appointment was, that’s all you get. So I got one month backpay, even though they sent me that damned form to fill out back in January. I hate them all… They’re just *insert many expletives*…

It hurts to be victimised like that. It was horrible what she wrote and how she wrote it. Saw she added things in about how I could do this or that when she could see I couldn’t. Outright lied about other things, and (hopefully) misspelled things without “not” and “un” (as abovementioned).

So I hope they suck on those documents I sent back and choke on them… They hurt me badly, and the stress has already greatly impacted the severity of all my conditions, and I literally cannot cope. The entire thing makes no logical sense, or even is within bounds of basic imagination… And frankly, if you’re going to screw me I’d like at least one drink first and a bacon sandwich after.  But not this.

The one postisive side was she was forced to give me “Higher Mobility” because I have to have round wheels now instead of using my legs. With that I get a little more money, but there are other benefits like being eligible for Motorbility, or getting 100% off car tax on a normal car that’s used for you. So we’ve used the car tax discount for now whilst I research what benefits Motorbility offers instead that’s any better (if there is anything better they offer) than what my parents do now with their cars, and whether it’s worth losing that money to them in lieu of a (hopefully) suitable car. Since I can’t drive, this may not be of benefit right now.

On top of that, I’m still also trying to get some sense out of Ableworld Specialists regarding my chair (Friefly). The Sales Rep (who told her it was simple to email her with other requests) refuses to talk to me nor answer her emails. She’s made a mistake with the Centre of Gravity (COG) on my chair, as well as the length of the seat, and now she refuses to acknowledge me.

The one and only time I got her on the phone she spoke with brusque, rude, and semi-indignance (I think – I know it was rude) and barely even discussed it with me. Ironically, she had a rebuke about changing the COG and tipping too far back, when the reality is because it’s too far back I tip forward because it isn’t balanced. Since it’s not her sitting in it all day every day, she should really listen to the person actually in it.

So I sent a complaint directly to customer services. And because she never answered my last email, I’m naming names, because I’m tired of chasing her unprofessional ass through Kingdom Come and back. It was a fairly extensive and detailed email, and I’ve told them to reply within a certain time, with the BHTA to come if they didn’t fix it. So I really hope they do it, because I don’t want to contact even more people.

This is already far and away too much

 

 

 


Autistic Peers

Autism and Expectations

I’ve been banging on about Autistics needing Autistics for ages, but it was only when I went to the Speaker’s Day (you can read about that here), that I actually realised just how much.

I was talking about it with an Autistic friend at the weekend and she said, “It made me really angry. This is what we should have had. This is what socialising should be. This is what it is for everyone else.”

She was right. I’m angry too. Angry that I had to wait until I was in my late thirties before I could sit around a table with a bunch of virtual strangers, and not worry that I was missing something.

What was special about that table? It was round, that’s probably symbolic. Nicely Arthurian, no one was sat at the head of it. No hierarchy.

What was really special about it were the people…

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Autistic Bilingualism

This is as if I could have written it myself, also being Welsh… I can’t believe there’s someone else like me in this way out there… Thank you to the author for writing this and saying words that I could not xx 😊

Autism and Expectations

I’m bilingual

My first language is English. It’s what my parents spoke at home, my first words and thoughts were English. I learnt Welsh when I went to Ysgol Feithryn (nursery). I would have been about two. It carried on into a first-language Welsh primary school, and then a secondary school where English was not permitted even in the playground (making it the ironically rebellious act). I did my GCSEs in Welsh. I learned French and German and a smattering of Japanese through the medium of Welsh.

I remember a teacher once saying to me (and time passed means it will be a clumsy paraphrase), “It must be so hard for all you second-language-Welsh pupils, you have to translate everything in your head. You see a table, you thing ‘table’ and then look for the Welsh word, ‘bwrdd’ and then you can say it.”

I looked blankly at her. I…

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Please Make The Stupid People Go Away… (The PIP Fiasco Continues…)

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.

20160701_221010000_iOSSecondly, 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.

20160920_173759000_iOS

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 to Ableworld 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.

Nope. Not OK. At all.

She’s coming now to kick their asses. Hard.

 


Silent Suffering, All Alone…

Does the grief ever really go away? The one you feel from all that you’ve lost?

The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.

To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.

It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.

I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.

It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.

It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.

It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?

I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.

I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.

I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.

In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.

I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to  offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.

I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.

 


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