Tag Archives: PIP re-assessment

Sunrays Through The Clouds…

PIP Day.

It went pretty well, to be honest… which has shocked me no end. I felt confident going in, the day was lovely, isobars were right up at 1025mb, temperature around 23ºC, I got there early… Everything executed astoundingly well. We got a little lost, because it’s in a weird place by the Menai Bridge, to get to Anglesey, but Google Maps sorted that one out.. 😉

We actually went in right away after we got there. We were early, and it looked like the assesseor was ready to go hom early. So we were able to go on in about 20 minutes sooner, which was great.

The woman I saw was really nice; a real nurse. She was sympathetic to my situation and could see what was going on – and seemed shocked that I didn’t have everything set up already, given this has been going on so long. She was also shocked when I pointed out it had taken six months for PIP to get around to seeing me after seeing my application. All in all, she seemed on “my side”, which was of course a huge difference to the previous idiot I saw, when I first got PIP.

She talked to me, listened to me, took my 14 page “dossier” of every detail I could think of that I’ve recorded and updated as things have become worse. What I didn’t remember, couldn’t say, or couldn’t portray properly, was all in there, so they had all the information they required right there, so they didn’t have to remember everything. Hopefully, it came in useful.

I was amazed it seemed so easy. That she made is so easy – she was lovely, affable, friendly, talkative, and your typical nice nurse, really. I was very lucky to get her, really. She made it easy to talk to her, was familiar with the neurologist who diagnosed me, and seemed very well-versed on my Asperger’s. I’m not used to that!

I hope I will at least receive a fair assessment this time. She seemed to understand the situation, at least. All I want is for their official paperwork to reflect what I have to go through, and not undermine it. She said she would get the report sent out by the end of the day today. There’s a chance I could get a PIP rate that reflects my circumstances, rather than one that undermines it. If they’re as fast as she is, then I will hopefully get the upgraded PIP level sooner, too.

… Yeh, OK, probably not, but you never know…!

 


Getting Ready for PIP… Again…

It’s the day before PIP: Take Two

I was nerve-wracked before, but now I’m just mad. My 2 large packets of paperwork are ready. I have everything I can think of set – frankly still basically in place since last week – and I’m ready to be irritated and bored by an inebriated idiot who probably doesn’t know much… if they’re anything like that last one I saw, that is.

After the cancellation of the last one, my life went crashing into a tailspin, exploding into all kinds of awful things. It’s basically been a living nightmare for the past five days, and I can only dearly hope that with this finally over with, I can relax a little and get on with still learning how to walk with wheels.

Yesterday, it got a little better… I went to see my sister in Southport and had a good time wheeling around and chariot-racing with the dog all along the prom, gardens, and down the pier – it was definitely something the people of Southport had not seen before! It was a good day out that was more like “me” and I was able to be pretty much completely indipendent, or the dog helped me out. We all had dinner together in the evening in a lovely place called the Fisherman’s Rest, then made the long journey home.

It was the first time in a very long time I’d had a long, successful and fun day out somewhere. It was also the first time my new chariot – my Firefly – had been on a big outing, and she did very well, and I’m really pleased with her. That paid it forward to today, where I had a fairly relaxed but active day. I have much more confident in my little Firefly, and I managed to do a scary thing (which normal people don’t find scary) – which is to see my cousisn’s little baby. Babies scare me, so to meet one, see one, hold one, as a practice before becoming an aunt for the first time, took courage. With my Firefly I had the confidence to do this, and met the baby and her three-year-old older brother… who’s a little maniac and so fun to play with!

To end my evening, before having to face the long night ahead before this awful thing tomorrow, I watched the movie Hidden Figures, which completely blew me away – especially since the story was based around real people and things that really happened. It was terribly inspiring, shocking and heartbreaking, as well as utterly astounding and amazing… and I love the fact it literally took a woman to get a man into space – and to the moon.

To see other women work so hard to trailblaze their way into computer programming, aeronautical engineering, Astro-physics, complex mathematics, over 50 years ago was simply amazing. It was also heartbreaking to watch the horror of segregation they had in America back then… As a Londoner living amongst everyone in a melting-pot, it’s simply unthinkable. As a girl who was never encouraged at school to push for maths or had an opportunity to study computers, to see those who had gone before burning their way into this world right at the top, it’s so encouraging, helping to feel like there really is a place for me in such a world. I’m no savant genius like they were, but I’m capable, and got jobs in IT people that far more “qualified” for it than I was on paper were overlooked for. Being able to do it without formal training is pretty lucky – and then I also get to thinking what I might have been capable of if everything that occurred, well, hadn’t.

In a way, because of the last couple of days, I’m going to this appointment feeling a little more like myself again. I’m relieved at that I will have this form on control – I have dyed my hair, I’ve been out [properly] for an active, full day-out for the first time, and I’ve had good and nutritious food, and I’ve had a far more relaxing night than the last time. I do feel like I’ll have a little more control when I go, at least… so I hope that is something in my favour.

I’m not happy about going at all, but at the end of the day I’m hugely worse than I was when I first ever saw PIP, which must be nearly 2 years ago now. Their original assessment no longer stands, so they really should be documenting that… if they possibly can… I think it’s quite clear what level of esteem I have for these people!

… So… Wish me luck!

 


Reflex Runaway…

Coped with today by running away to Liverpool for the day.

How else does anyone cope with what happened?? I was in a tizz, all over the place, unable to cope, or even process, what just happened when that guy called to tell me the appointment had been cancelled and rescheduled… So my mother took me to Liverpool.

It’s a comfort zone for me – the closest I can get to feeling like I’m “home” without actually going all the way to London… I’m a City Mouse, and speciafically a London Mouse. I am lost without it. going to Liverpool is the closest I can get to it, and because its almost as familiar and comforting to me as London is, and has been a place of great comfort since I was a youngster, it was a sensible place to abscond to today.

img_0877This was the first time I had been out on a rather long excursion with my new chariot. She’s called Firefly, by the way… After the ship on the show of the same name. It did not start off well , but when we did finally manage to make it to the L1, it went Ok – until we had to leave, of course…

Liverpool city centre and the L1 is pretty wheelchair/ mobility friendly, and it was so easy to wheel around there in my new chair. I mainly went to Superdrug (I desperately need to dye my hair and needed hair dye…!), where I got some great lipstick shades from Maybeline, and to Lush to get my favourite healing foundation, Jackie Oates, and the most amazing shower gel, It’s Raining Men.

After a few minutes of looking at phones for my mother at Carphone Warhouse, we then head back to the L1 to meet with my sister. She’s not feeling too clever, at around five months pregnant and it’s maybe 20ºc outside… So she’s feeling the weight and size of the little Kitten inside her, bless her. We end up going to Pizza Express and eating there. I had gluten free vegan pizza (including artichokes, asparagus, red onion, and vegan cheese – it was so nice!) and a small glass of wine to help with the buzzing in my hands.

The weather was glorious, it was nice there, my sister was there, I was eating food in a restaurant that wasn’t going to half-kill me, and finally something good was happening on this day…!

Now all of that was a nice time. Then it all went weird again when we went back to the car and my mother attempted to pay. The machines wouldn’t work, and it took ages to get it sorted.  By this time it was 19:43 on my phone, and the place closed at 8:00pm.

Then when we got out we ended up going to wrong way, and eventually went back home via Speke (and John Lennon airport, where I saw no planes! 😲🙄) and Runcorn. On the journey, mam selected a way home I wasn’t comfortable with, so I got very aggitated, because of the state I was in, and I couldn’t stop being tizzy about the PIP appointment. It was now once again hanging over my head at a time it was supposed to have been over with and aggravating just about everything.

By the time I got home, I was in quite an aggitated state. After a couple of big panic attacks, and readjusting to being home, I decided to do my dance DVD to burn the anxiety of. Smile and Sway is a pretty fun DVD and it’s good for burning off steam whilst enjoying some good dancing, and interesting, fun moves. I felt better after doing this, and that was when I finally managed to get upstairs in a better mood, ready for tomorrow.

img_0879The physio is coming tomorrow (again). Apparently, they’re supposed to have some kind of “plan”… I don’t know what kind, or what I’ll be expected to do. Hopefully, I’ll also have a shower, so on Friday I can dye my hair (whilst watching the Wimbledon Men’s Finals as it’s brewing….!) – but we’ll have to see. What I do hope is there’s going to be something I can do to my legs, which just can’t move on their own, so they’re missing out on so much – it’s not like they can yoga and dance like the could do. And they miss it.

Hopefully, I’ll be up for it and be able to make the most of whatever she says I should to.

So, overall, it turned out pretty OK in the end… But it certainly wasn’t an easy one – and I’m so glad it’s over with now!


And The PIP Nightmare Continues…

Oh my… ********* !! I cannot speak! Buggers cancelled the damn PIP appointment 11:30am on the day, literally right now – was supposed to be at 3:40pm today!

Now I have to wait until next Monday (it’s Wednesday today) until the next one????

I mean, really, they no not understand how ASD works, and now I’ll be lucky not to have a meltdown… I can literally feel my brain imploding right now, and I might even actually cry… I really can’t even breathe…

I did not require this extra distress and stress on top of everything else! What is wrong with these people??! I really can’t be doing with another meltdown…

Oh, I’m so sad and confused now… I really don’t know what to do with myself  – my anxiety was already through the roof, and now it feels there is no number big enough to cope… I used to be better at it, but this/these illnesss(es) has now taken all that away from me, and I’m basically left as a panicking jackrabbit the entire time…

Ohhhh… … …

 


Never Rains But It Storms…

On 14th February 2017 I received a text message to state that a PIP update form I sent them two weeks before had been received. Today, on an already-terrible Summer Solstice day, I received a letter package from them – over four months later – to go and see them next month.

I’m scared about this. I’m barely managing as it is, and this is terrifying. You hear on the news of these so-called Health “Professionals” being downright terrible and respectful, even abusive, about their “clients”. About them meeting targets by writing off the sick and the vulnerable. About how they force you to go to tribunals to get what you deserve. What little that is, anyway. It’s not like PIP is a liveable amount, not when even simple things you need are so expensive (clearly no one at PIP has ever been to Ableworld or had to personally finance things the NHS either refuse or never get around to). They’ve even written off a friend, taking everything away, despite her having all the evidence and more required to prove how ill she is.

It’s a terrifying prospect having to meet them again. The last time was several years ago, when I lived in London, about a year after I  became ill. It was one of the most stressful times, and my best friend was my amazing rock and I will be forever grateful to her for all her help around it. We travelled to some place I’d never heard of quite far out of London, and had to pay (a horrific amount, about £90) for a cab both there and back. I had to go in my first god-awful wheelchair, which was so uncomfortable, and we were forced to wait for hours to be seen.

I was so ill when I went in to see the person – some guy who was an uninterested and arrogant sod, who also took no interest in the fact I was there in a wheelchair and clearly traumatised. I shouldn’t have gone in there alone, but I did… and it was only to my detriment. He basically lied about a bunch of crap, played everything down, and then the outcome was I barely scraped enough to cover basic Standard Daily Living. I saw red, got help to make an appeal, and my friend and I eventually went to a tribunal. They awarded me Standard Mobility as well, without question. It’s was so horrifically stressful to go there, but at least this time I saw three older, highly intelligent women who had reached the top of their professions. To them, it seemed it was a no-brainer.

So… I’m not looking forward to seeing some other inebriate again.

Arguably, I can at least say that it seems like they read my dossier that I sent with my update form. I rather expected they wouldn’t. It was rather the tome… But in the 4 months hence, things have become even worse, to the point – as we all know – where I’m imprisoned in my own home until I (eventually) received the special chair that was ordered. You know, the one that’s not going to try and kill me. I even had to push back their original date (3rd July) for another, where – hopefully – said chair will have finally arrived (with the new date being on 12th July). So… in three weeks’ time then, give or take. That better be long enough, because if I have to go in the other one, I’ll probably just die and it won’t matter what the hell they think then.

Once again the paperwork has to be dragged out (another tome of reading!) for them to photocopy (Lols… their time and dime, and karmic punishment, quite frankly, for not realising it’s the 21st Century and everything’s digital) and hopefully read at least some of. I’ll throw in pretty much everything for good measure – I always do, you never know what rubbish they’re going to be looking at whenever these things turn up. At least then they can’t complain. Or say you didn’t tell them, finding a nice, tidy loophole to wriggle right out of. It’s bad enough that my chronic conditions are weird and no one understands them. Hopefully, these whackadoodles will, and will see that I unfortunately cannot manage their general expectations of someone who qualifies for “Standard” anything on this.

I honestly don’t care about the money. Yes, given how ridiculous prices are compared what you don’t have to spare, money can be rather handy. However, I prefer the recognition. Where they stand there, nod, and acknowledge I go through this, that I must live and struggle in this way possibly forever. That’s what I really want.

It’s wasn’t as if today wasn’t bad enough, before all this, having not slept all night due to paraesthesia and hyperactivity due to my confinement (again… Haven’t slept properly in probably a week) and suffering “Isobar Flue”, thanks to them dropping down to 1011mb and bringing huge storms along with them to suffer with. The storms are on their way as I write. I hope they’re not bad enough to be named… I certainly do not require such turbulence now… nor am I now in any position to cope with it.

I’m so upset now, I’ve got through at least 5 gluten-dairy-free chocolate chip cookies. At least there’s no ice cream…