Tag Archives: mobility

In The End… Goodbye, Good Riddance, to 2017…

It’s New Year’s Eve. The end of 2017… And I’m definitely glad to see it go. This last year has been the year from Hell itself.

It started with agony that could not be compared. With my starting to lose the ability to walk at all. With my losing the ability to crawl up the stairs. With my losing the last few threads of what was left of me.

2017 was the year I stopped being able to walk. To use my legs. It was the year I had to get a stair lift. The year I had to get a “real” and “proper” active wheelchair – something that caused a lot of pain, difficulty, complications, and tears. The year I found out I had been suffering an elusive condition for the last 19 years and it had impacted greatly upon my Fibromyalgia – something no one had ever heard of, called Hemiplegic Migraine… and I found that out on what should have been my late grandfather’s birthday.

This was the year my best friend left for South America, and was no longer here. This was the year I went completely numb and unable to feel anything touching my skin or pain from the outside. This was the year I could no longer stand for a shower or get into the bath. The year where gaming became more and more elusive because my hands and focus no longer worked properly. The year Fatigue came to over-run and ruin my life. The year PIP decided to decieve and scheme and refuse to even acknowledge the difficulties I have by outrightly lying about me in their reports. The year I was betrayed by my own therapist, just the third time we had met, and after waiting over a year on the waiting list to see her in the first place.

This was the year I learned you can lose your life without ever having to actually die.

I started 2017 with the ability to shuffle with walking aids and go for a shower… And I am ending it without the ability to walk or properly move my legs, wearing a catheter, permenently in a wheelchair, unable to go to the shower or get into the bath, barely able to leave my room, struggling to move and sometimes even breathe.

2017 was the year I think I truly died inside.

It started with hardship and loss. Went on to destroy what was left of me and my body. Ended with trauma and being near-bedridden.

On the bright side, I also ended up getting 2 graphic card upgrades and end the year with the GTX 1070 8GB OC. I was also introduced to several amazing games – in 4K High/Ultra, too – and got a Lenovo YogaBook – which is terribly fun to have.

And I got to see The Last Jedi… So at last one good thing happened.

 

 

~ Happy New Year ~

 

 

~ 2018 ~

 

 

 

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Beginning Of the End (of the year…)

Already yet another Fibro/Fatigue flare-up… and just before Yulemas (as in Yule / Christmas). And just when I want to see Star Wars: The Last Jedi, too…

More fever, more pain, more exhaustion: I’ve been up all night for days, I’ve barely slept in nearly a week. Needless to say it is not going well. It’s a good thing I have my new mattress and catheter… I know exactly how much worse it would have been if I didn’t have those.

The worst feeling is that I still cannot reconcile how much absolute control this/these condition(s) have over me, how it dictates my personality, how the pain and exhaustion prevent me from even leaving my room or sometimes even my bed. During a flare-up I can do virtually nothing, and it seems that no matter what precautions I attempt, they’ll turn up whether I like it or not.

So you might not be surprised to know I would rather Yulemas disappear and I couldn’t care less about it this year. I can barely muster the energy to even want to see The Last Jedi  and I’ve been so excited about this for two years. My friend and I were supposed to go to  Christmas thing at Lyme Park too, and after a whole load of flare-ups, one after another, after another, that now is too off the table, amongst many other things. It better not take Star Wars away from me…

There’s so much I had plans to do, now it’s Yulemas, nearly the end of 2017, and I’ve  achieved precisely nothing from this year (unless you could finally finishing PC edition of Dragon Age II…). Instead of achievements, it’s been yet another year of loss. Even losing my best friend to a year or two travelling around South America (although, bless her, she still makes sure she’s there for me if I need her).

The weather has destroyed so much of my health (whatever flimsy amount of it there was), everything from severe storms and torrential rains, to terrifyingly low isobars and bloody snow. Plans have been destroyed. I lost the remainder of my mobility this year.

It’s been quite the Annus Horribilis.

And I doubt it’s going to get any better in its final week.

 

 


Falling…

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…

 


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. 

 


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