How my PIP assessment went

N.B. Personal Independence Payment (PIP) is a benefit in the UK that helps disabled people cover the extra living costs they incur as a result of their impairments, such as needing to pay for a care team or buy pre-cooked food.


My PIP assessment was actually a positive experience. Yes, you read that right. It was a positive experience for me, and I am stunned.

While I wasn’t anxious or stressed in the days leading up to the appointment, I didn’t have an ‘everything will be fine’ attitude about it either. I was definitely not expecting to feel relaxed, or like the assessor had an understanding of my cerebral palsy, and yet, that is exactly how I felt throughout.

My assessor was lovely, apologised that some of the questions were a bit personal and kept telling me that my answers were good or understandable; like when I told him that although my impairment mainly impacts on my lower body, I still get pain in my neck and shoulders because of poor posture. I felt like he understood the nature of my pain and that made me feel more relieved that I thought it would. Looking back now I was definitely worried that my pain levels might be brought into question, and they weren’t.

He referred to things written on my form and medical evidence a lot, which made me feel like he’d read my case carefully. I mentioned depression and anxiety in passing on my form, because the medication I take for that means that I can’t take ibuprofen as pain relief any more, and he told me that he wanted to explore that a little more so he didn’t miss anything.

I felt listened to and believed. I thanked the man at the end for making me feel comfortable. I have friends who have found their own assessments very distressing, and I’ve heard many similar stories on social media too. I am aware that this makes me lucky in a way that it shouldn’t have to because everyone’s experience should be like this.

As daft as I know this sounds, I’ve spent today in a bit of a daze. I can’t quite believe that it’s all over, and how much better I feel for it. I feel so grateful to have had such a positive assessment. I feel sad and guilty that so many don’t feel the same way about their own.

Of course, the PIP application process isn’t over for me just yet. The assessor now has to write a report that will be sent to a case manager who will decide the outcome of my claim.

The important thing for now is that I feel like the assessment went as well as it could’ve done.

I just have to hope the outcome is in my favour.

Two days until my PIP assessment

N.B. Personal Independence Payment (PIP) is a benefit in the UK that helps disabled people cover the extra living costs they incur as a result of their impairments, such as needing to pay for a care team or buy pre-cooked food.


Usually, an event like a PIP assessment would send my anxiety into overdrive weeks in advance, but with just two days to go all I feel is indifferent. If anything, I am more anxious about the fact that I don’t feel anxious about the assessment….

Maybe it’s because I have good coping strategies in place that help me keep my anxiety at bay. Maybe it’s because I’m on a dosage of medication that works  for me. Maybe it’s because a friend has been helping me and I know he knows his stuff. Or, more likely, it’s a mixture of all three.

I wish I  could say I view not being especially worried about the process as an entirely positive thing, but I don’t. Yes, I’d much rather feel indifferent than like I’m going to fall apart any second (which could well be how I actually feel when Tuesday morning rolls around) but the probable reasons for my indifference don’t sit well with me.

Either I’m being so blasé because I’m burying my head in the sand, which I don’t feel like I am, but who knows? Or – and I think this is the most likely cause –  I’m trying not to worry because I know the outcome is largely out of my control.

At the end of the day, an assessor is going to come to my house, go over the form and medical evidence I submitted, talk to me about how my cerebral palsy impacts on on my day-to-day life, and decide, what, if any, level of ‘award’ I am entitled to. I feel as though all I can do is answer their questions as clearly and honestly as I can. The rest is up to a stranger I haven’t even met yet.

These things are always unpleasant; telling a stranger about my inability to tie my own shoelaces at the age of 28, or having to ask my work colleagues to cut my food for me if we go out for lunch will always a bit embarrassing for me. It’s one thing to know these things myself, but having to say them aloud to someone else is never nice. Especially when I know I’ll have to talk about it in great detail for any length of time.

But what will be will be, I guess.

 

A Life Without Limits by Sir Bert Massie (book review)

Let me start this review by saying that I knew nothing about Sir Bert Massie before I read his memoir. I recognised his name, but I didn’t know why I recognised it. Basically, I’ve grown up seeing the results of his extensive campaigning all around me without knowing it.

For those of you who are as unsure as I was, Sir Bert was a disability rights activist who grew in 1950s Liverpool and contracted polio as a baby. It didn’t take me long to realise why his name was so familiar. He worked for RADAR, the organisation behind the RADAR key locks often found on accessible toilets, played a huge part in bringing the 1995 Disability Discrimination Act into being, and so many other things. This obituary from The Guardian explains his work far better than I ever could.

I’m (just about) old enough to remember days before buses lowered closer to the pavement or had ramps to make them more accessible. I still remember my mum enthusiastically telling friends and family how ‘they were starting to adapt them now’ which made my frequent, two bus journeys each way, trips to the hospital much easier for us both. Even as an adult, I’d be unable to use buses independently if these adaptations hadn’t happened.

It turns out that the Bert was the “dispensable disabled person” who took part in the tests to see whether a wheelchair could remain upright without needing to be clamped down on these shiny new buses. I have to say, that although my wheelchair has wobbled round on many bus journeys, I’ve yet to actually face-plant the floor. I guess I have Bert to thank for that one.

I suppose the thing that struck me most of all was how different our childhoods were, and yet how similar they could have been. Attitudes towards disabled people were probably already starting to shift by the time I came into the world in 1991, but we still had a long way to go. In many respects we probably still do.

No one has ever refused to serve me in a cafe or restaurant, as Bert recalls happening to disabled people when he was growing up, but a nice elderly in a supermarket did once tell me dad that I “shouldn’t be in here with that thing”. That Thing being my first walking frame. Luckily, I was too young to remember the conversation, but I imagine her comment didn’t go down well.

Of course, cerebral palsy (CP) and polio are two different disabilities, but Bert and I both have physical impairments. He spent the first five years of his childhood living in hospital and having various treatments and surgeries

Bert went to schools that were adapted for children with physical impairments. I started mainstream schooling in the mid-90s in a primary school that wasn’t adapted right away, but began to add things like accessible toilets as staff and pupils needed them. When I left in 2002, the only way to get to the library (which was a computer lab by then) was up a flight of steps I think may have been made out of stone.

When I arrived at secondary school that same year, lifts were starting to be added there too, although many of my first real memories of high-school involve being stuck halfway down a flight of stairs in a stair lift, having to be manually cranked to the bottom by one of the caretakers. Usually at break time while the rest of the school trooped past me trying not to laugh. Most of the time I just bypassed the lifts completely and used the stairs.

I left school with 9 GCSEs and 3 A-levels. Bert didn’t because the places that offered these courses were inaccessible to him, so he went back and studied later. If I were more physically impaired than I am, I guess this may have been what happened to me, also.

As much as I enjoyed reading about Bert’s life, I’ll admit that most of the politics went over my head. While this was because it’s not something I have much knowledge of I feel like the book was written mainly for people who already have a decent understanding of how these things work. While this is understandable, I worry that it might put those in similar situations to myself off finishing the book.

Towards the end there were probably more acronyms than in you’d find in an average episode of Line of Duty, and I found myself longing for a glossary. I do plan on going back over the parts that confused me because it’s a topic that I feel I should try to better understand.

Nonetheless, this is still worth a read if you are interested in disability rights, or just like reading about other people’s lives.

If you fancy picking up a copy for yourself, you can get your copy from mereobooks, or get the audio version from the RNIB

Do I seem anxious to you?

“You’re not anxious, are you? You always seem quite confident.”

My jaw must’ve hit the floor, “Oh, yeah,” I replied, trying not to laugh, as I often do when I’m shocked. “I’ve had anxiety for years, I just manage it with drugs and therapy.”

This is a genuine conversation I had with someone this week after I mentioned something triggering my anxiety. I wish I could remember what I’d actually said. I’m pretty sure I only meant for it to be a passing comment, but the person I was talking to seemed genuinely surprised by it.  In the end, I’m not sure which one of us was the most shocked; them in learning that I have anxiety, or me in learning that I’m managing to control my current ‘wobble’ well enough for it to not obvious.

Admittedly, this person has only known me for a couple of months, and hasn’t yet seen me when I turn into a fidgety, muttering mess who can’t stop washing her hands and has to ask someone ‘will [insert current worry] be all right?’ more often than a two year-old asks ‘why?’.

There’s no shame in being so anxious that it stands out more than my electric blue walking frame, but it was reassuring to know that, even though I feel like I’m slipping downhill a little bit at the moment, it clearly can’t be as bad I was starting to think it might be. It would have been impossible for me to relax at all a years ago, and I couldn’t help but outwardly show how I was feeling. This, of course, made everything worse. It led my family shouting at me in public out of frustration, and me not being able to see my friends without texting them afterwards to apologise, even none of us were sure what I was apologising for.

I’d spent most of the weekend prior to this conversation either in bed with the duvet over my head hoping the world would go away, or reading aloud to myself in an effort to stop myself falling into worry-cycle. It must have done me some good, I guess.

Even though it wasn’t meant as one, I can’t help but take this person’s surprise as a huge compliment. I take this to mean that, even on days when I’m feeling ‘worse’ than normal, my self-care routine and day-to-day coping strategies are helping.

There was a time when I was genuinely concerned I’d never manage to control my worrying and hand-washing ever again, but clearly I can.

I came back from my lowest place, and knowing that is the biggest confidence-booster of all.

Mental health update for #MentalHealthAwarnessWeek2019

It’s been a while since I’ve given you an update on how my mental health is, and this week is Mental Health Awareness Week 2019, so now seems like a fitting time to bring you all up to speed.

A bit of background about my mental health

Long time readers of this blog might remember that I’ve struggled with anxiety which manifests itself as what I call ‘OCD-type tendencies’ since I was about eight or nine years old. It started out as me constantly worrying about germs and constantly washing my hands. Over the years it’s taken a few different forms, like uncontrollable worrying, worrying I would eat too much and be sick, an even more intense fear of germs that had me washing my hands before, during and after a trip to the loo and changing my clothes after every visit to the bathroom.

When I was at my worst around five years ago, I was unable to sit still and would often pace my house crying and mumbling to myself to try and quiet the din in my brain. I struggled to get a job after graduating university, which made me depressed at the same time. Some days I struggled to get out of bed. I felt worthless and everything felt pointless. The world seemed grey for a long time. I went to the doctor, started antidepressants and started therapy again.

How my mental health is as of May 2019

As of May 2019 I’ve been on antidepressants for roughly five years, during which time I’ve altered dosages and changed tablets until I found what seems to be the right fit for me. Medication was not a magical cure for me, and it certainly hasn’t taken away my anxiety completely, but it definitely has made a difference in my case. In truth, I can’t really remember a time when I haven’t had anxiety, and I’ve accepted that it is something I’ll have to manage throughout my life. I’m sure there’ll be bumps along the way, but I feel like a have a deep enough understanding of my triggers and the things that help me manage the blips, to nip things in the bud before they reach the levels I’ve been at in the past.

Up until a couple of months ago my anxiety levels were feeling pretty, well, level. I’ve not felt quite so ‘comfortable’ of late, but that’s something (in my case) to be expected, given that I’ve recently started another new job and am in the process of applying for PIP. I’m aware of how I’m feeling and I’m monitoring it. The people close to me know I’m feeling ‘unsettled’, and I’m using some of the coping strategies I’ve learned through various stints of CBT.

I’ve been in full-time employment since January 2018, and I don’t think I’ve seen a therapist since the September before that. I always used to say as soon as I got a job I’d pay to see a therapist privately on a constant basis. Of course, the support I’ve had on the NHS has been amazing, but as anxiety especially is something I’ve struggled with since childhood, I feel like being able to have support from the same person as and when I need it for as long as I need it, would be massively helpful to me.

And yet, since I’ve started work I don’t actually feel like this is something I need to do. Not yet anyway.

It’s taken a long time, and a lot of hard work, but I think I’m mentally in a good place, and have been for a while.

 

Life update: Applying for PIP, another new job and my Mystery Hip Pain returns

Hi everyone,

I hope life’s treating you well?

I can’t quite believe that we’re in April already, and I’m sure I some of you can’t either. I started yet another new job at work in March! Yep, that’s right, the girl who couldn’t get a job at all has had three different ones in under a year! I can’t quite believe it. I’m still at the same place, and it’s another temporary contract, but it’s also a step up in some ways. I feel like I’m slowly starting to get my head around it so yay, me.

It’s not all smiles and rainbows in Nic Land at the moment though. I’ve finally had my letter telling me that it’s time for me to switch from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). For those of you who don’t live in the UK these are two different, non-means tested, disability benefits that help people pay for things like care packages and any extra costs they might incur because they need extra support with daily tasks. The former is being replaced by latter for reasons I’m not going to try and explain because I don’t entirely understand it myself.

I was on indefinite DLA prior to having to re-apply for PIP, and being awarded PIP isn’t guaranteed. Now I have to go through the process of filling out lots of forms about how my cerebral palsy impacts on me, and being assessed to see if I’m entitled to it. It’ll be a long process, and it’s one that I’m only at the start of.

I have some very kind and well-informed people helping me with this. I’ll keep you posted, and try and pass on as much of their advice as I can to any of you in a similar situation. I’ll admit I’m clueless on this one.

In other news, the Mystery Hip Pain that has been a semi-regular feature in my life for the last few years appears to be back with a (very painful) vengeance, and it’s fair to say I haven’t missed it. I’ve been working from home a lot more than usual because it feels like bone grating on bone whenever I move, and it keeps locking at very unhelpful times.

Luckily, I have an appointment with my consultant next week. So far, we haven’t been able to work out what causes it or why, but I’m hoping we’ll have a breakthrough this time.

I’ll keep you updated.

Love,

Nic x

 

Things I learned in January 2019

So, January 2019 was hella busy. I started a new job, travelled to London by myself for the first time, got a temporary ‘new’ wheelchair, celebrated my birthday, celebrated Rob’s birthday, celebrated two other birthdays in my friendship group and still somehow found the time to read/listen to eight books/audiobooks.

Needless to say, I’ve learned a lot, about myself and about managing my disability day-to day. Here are some things that will stick with me:

  • Yes, London is far too big (and fast) for me to walk around, but as long as I get taxis everywhere, it’s no different to me travelling anywhere else by myself
  • My Nimbo walking frame fits into the back of a Toyota Precis Plus without needing to be folded up. Not that my family will be buying a new car any time soo, but it’s good to know!
  • I really, really need to put some WD40 on the flip-out seat of said walking frame, because it’s still new and far too stiff for me to flip back up (shout out to Antony if he’s reading this for managing to sort it out for me)
  • I am getting better and managing my pain and energy levels. I’ve been working from home two days a week instead of one, and it makes a huge, huge difference. Far more than I thought it would
  • Black cabs are actually far more accessible than I thought

I hope the month was kind to all of you, too. I can’t tell you how good  it feels to be to say that I coped in London, admittedly with a lot of help from many of my colleagues. But that still doesn’t take away from the fact that this isn’t something I would’ve ever contemplated doing 18 months or so ago.

I’m still counting this an an important step in my journey.

Oh, and if any of you want to be my friend on Goodreads, here’s where to find me.

Much love,

Nic xx