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… … …

 


Waiting For The Axe To Fall…

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.

img_0886It 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.

Oh, Lordy, I so do not want to go!

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Aching & Breaking

The weather is getting to me again… My hands are tingling with pins and needles, mixed with tiny but very powerful and painful electric shocks. My fingertips are especially painful, as is a small space at the bottom of my right thumb joint.

Of course, that’s not all it is, but right now it’s marginally the most painful and uncomfortable to endure. Otherwise there’s various neuropathic issues, from ice-cold feet to deep electic-lightening and achy-like deep buzzing around various places like my neck and hips and shoulders. Even my eyelashes and hair feel like they’ve been plugged in to an unrestricted electrical current.

img_0896The thing is that I’m trying to watch the damn tennis, and it’s making it really difficult! I have my 42-inch screen split between 2 matches via my PC – one with Murray, the other with Nadal. And I’m playing with my iPad (or I was, before trying to write this, anyway…). Trying to do all that whilst, well… everything… hurts, is hard. So I’m annoyed…! It’s Wimbledon, for crying out loud!

This is supposed to be the summer… I’m wondering if someone forgot to email the weather here in North Wales… The temperature has gone down, the isobars are back on the floor again (about 1011mb straight down from being in the 1020s), and once again I get to be controlled by the weather – but I’m trying really hard not to be!

To make matters worse, this morning I had to get a mountain of paperwork together for a new PIP (re)assessment – I told them I was worse, so five months later they finally want to check that’s actually true… I have two plastic wallets filled to the brim (if they had brims, which they don’t) with letters, paperwork, and a personal statment that’s 14 pages long detailing everything – so they can’t say I didn’t tell them.  And I’m still wondering if I’ve got everything I need, and whether they want all the old stuff as well.

I think I’ve just put literally everything and then some in there, so hopefully everything they want is in there. But at least that’s out of my hair now. It’s on Wednesday (it’s Monday today), at 3:40pm – and I checked, the isobars are up so I’m not going to be completely dead by the time I get there.

There’s a fair chance I’ll manage at least some full sentences whilst I’m speaking with the annoying fruitloop that will be undoubtedly in charge of my fate with these people. But that will be after quite a long journey to get there… because they just love to send you places you haven’t got a hope in hell of getting to, just so they can get you out of their hair on a rubbish technicality…

Oh, and to follow this joyous occasion that will probably leave me wanting to chew my own head off, I then have to see the physio on Thursday, the next day.

Then on Saturday I long jaunt to see my lovely sister in Southport… I’ll enjoy it whilst I’m there but I’ll probably not appreciate the long journey! I hope that will at least end my week on a nicer note!

Oh the fun that awaits me this week…!

 

 

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