I jinxed it…

Do you remember that bit in my previous blog post where I said that my hip and pelvis pain had been so much better since I’d been staying at home all the time?

Well, I think I jinxed it, because guess who started having a pain flare the day after I wrote it?

Yup, that’d be me.

My pelvis pain is back and making itself felt and I am most displeased.

It’s not the worst flare I’ve had in fairness but it’s caught me on the back foot, that’s for sure. I’ve spent the last couple of days trying to figure out if I’ve done anything differently that may have triggered it; something I could just stop doing and have it settle back down again. Unfortunately, the only thing that’s been different is the weather, which has gone from being wonderfully warm to flippin’ freezing.

My cerebral palsy and the pain it causes is so much easier for me to manage in the summer. Heat is one of the key ways, if not the key way that I manage my impairment on a day-to-to basis and to have the sun disappear so quickly makes my body very cranky indeed.

So, reluctantly, I have dragged my orthopaedic shorts back out of my wardrobe which will likely help if I wear them for a couple of hours every day while it’s cold. They’re custom made for me and are measured to the millimetre. They’re designed to be skin-tight and hold my hips and pelvis in the right place.

I like them and they do help, but getting them on is a total nightmare. Have you seen that bit of stand up Michael McIntyre does about watching someone put tights on? It’s like that only it takes about three times longer and doesn’t even have the slightly sexy bit at the beginning.

All in all, I shouldn’t complain, but it’s made me realise just little I’ve had to focus on managing my pain levels the last couple of weeks. Of course, it was wonderful while it lasted, but it’s hard not to feel a little bit sad when the pain becomes front and centre again.

A PIP decision, a permanent job, and a new consultant

Okay, I admit it. It has been so long since I last updated this blog that I couldn’t remember my login details. I may have forgotten those, but I hadn’t actually forgotten View from a Walking Frame, the people who read it, or that an update was long overdue. I could spend ages writing a rambling apology, but instead I thought I’d just get straight into updating you all on everything that happened in the last six months of 2019. Grab yourself a cuppa, this may take some time.

My PIP decision

My PIP decision wasn’t as straight forward as I  was hoping it would be. I was given an award on the back of  my initial application and assessment in the end. I was happy with the outcome  at first, but when I discussed it with friends who understand the points system better than I do they felt that I should apply for a mandatory reconsideration because I should’ve been given more points than I had. The links I’ve included here explain the process far better than I could!

I wasn’t going to do it. I really, really wasn’t. As far as I was concerned, they’d given me something and I’d got through the process with my mental health in as good a place as it ever is, given my usual levels of anxiety and history of depression. Then, after much reflection and gentle nudging from almost everyone I know, I decided to go through it, in support of all the other disabled people who end up having their original decisions overturned at mandatory reconsideration or tribunals.

I was lucky. I was awarded more points at mandatory reconsideration in a way that more accurately reflects the way my cerebral palsy impacts on my daily life. For once, I felt like I’d stood up for myself rather than just accepting things as they were. I am proud of that. It wasn’t easy, and certainly didn’t come naturally to me. But I did it.

I have my first ever permanent job!

As of this month, I’ve been in full-time, paid employment for two years. I started out on a six month contract, and, as of October last year, I’m now permanent at work instead of being on short contracts that keep getting renewed. That’s something that felt impossible two years ago. This is my fourth role at my organisation so I’ve certainly gained a wide range of experience in that time.

I have a new consultant

Towards the end of last year, I decided to ask my consultant if she could refer me on to a colleague of hers for a second opinion on what could be done about my hip and pelvis pain. It was getting to the point where I couldn’t sleep because the pain was so bad and I thought someone new might be able to come at it from a different angle we hadn’t tried yet.

I’ve now met with this new consultant twice, seen a hip specialist, had an MRI, had a gait analysis a steroid injection, and have been fitted for a pair of custom made Lycra shorts that should help hold my hips in place. I’ll blog about all of these things separately though, so that I can talk about them all in more detail.

How are things with all of you?

Love,

Nic xx

 

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