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

 

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

What a difference the right chair makes

Something exciting happened to me this week!

My new, made to measure work chair that was recommended on the back of my Access to Work office assessment finally arrived at my office, complete with a beast of a footrest that moves up and down as my feet do.

This might not sound very exciting to you, but it was for me and all of colleagues. We were all hoping it would reduce my pain, and you know what – it has. Way more than I dared to hope it would.

I would say my hip pain levels have improved by 80% across the board, by which I mean not only while I’m actually at work. I’ve been in a lot less pain in the evenings and on my commute too!

My back pain is also much better during work hours, and I haven’t felt like I am going to spasm and spring out of the chair once yet. I know it’s only been four working days, but I am so happy and grateful to my employer for investing in me like this that I could cry.

1am

It’s 1am and here I am, unable to sleep for what must be the third time this week.

I have no idea what’s keeping me awake tonight. One night, it was feelings of ‘What am I doing with my life?’ another time it was because I wanted to write. Last night pain decided to climb into bed with me and make getting comfortable impossible, but today…
It’s been one of those weird days today, where I haven’t felt unwell exactly, but I’ve not been myself either. I could tell things would be like that as soon as I woke up because I felt anxious to my tummy. All churn-y and whatnot.
I’d already planned to work from home, which was probably a blessing. I sort of feel like I’ve been in a daze all day; not down the grey pit of depression, but not fully engaged with life either.
I suppose I’m probably just over tired. I think I should try sleep now. I hope i can. I’m sure things will feel better in the morning…

I miss writing

It’s 4am and I’m lying awake thinking about how much I miss writing. I have so many ideas but no creative energy left at the end of the day to act on them, leaving me with an uncomfortable blockage that right now feels impossible to shift. The only reason the words are coming out now is because I know there’s no chance of me getting back to sleep until they do.

This whole needing to manage my energy levels thing is new to me. People often assume that my cerebral palsy makes me tire easily, and while that’s true when I’m physically active, it’s not the case with my mental or creative energy.

Before I started working full time, I never really considered that a desk job would be physically demanding for me. I do after all, spend the entire day sitting at my desk typing. I guess I never really noticed how hard forcing my body to sit in one chair in one position for hours would be because, when I’m at home, I sprawl out, move around, and spend (probably too much) time lying flat on the floor.

My employers are great and let me work from home when I need to but I like to be in the office as much as possible, although I do ask for home days when I need them. I don’t like it, but I’m learning to accept it.

I feel like I’m having to fight against a lot more muscle spasms these days, and not just at Work, but at home and when I’m home too. At least, I think that’s what they are. My whole body feels wound too tightly and I can only take it for so long before I need to ‘spring’ and sitting still becomes almost impossible and too uncomfortable to bear.

This is new to me. Does it happen to any of you? If it does please let me know.

Anyway, I’ve just noticed that it’s turned light outside so I’d better try squeeze in some more sleep.

If you’re still reading This, thank you for giving me a reason to write and a space to clear my head a bit.

 

Love,

 

Nic x

Botox, orthotics & Hip Pain: a mini round-up

Okay, okay. I admit it: I knew it had been a while since I updated you guys on how things were going, but it turns out that it’s been almost a month!  I’ve had a fair bit going on so I thought I’d do one of my mini round-up posts to bring you up to speed.

Botox injections

I saw my consultant for my latest round of botox injections. I have these in my legs to try and ease the muscle tightness caused by my cerebral palsy.  The appointment also gave me chance to talk to my consultant about my increasing hip pain. She agreed that we need to do something to try and level off my pelvis, so she sent me back to orthotics to get a raise put on one of my shoes. If that hasn’t made much difference by the next time I see her (in about four months, this time) she’s going to look at referring me back to orthopedics to see if they have any suggestions. I haven’t seen anyone from that department once I’d finished having all my hip surgery just before I went to university, so that would be interesting but scary at the same time.

Orthotics

After seeing my consultant I was sent an appointment to go back to orthotics which I always dread (orthoics I go waaay back). I saw an orthotist I’ve never met before. She seemed nice and measured me up for a new pair of calipers (similar to the ones pictured) to go along with the shoes when I told her I don’t have a spare set. The new shoes will have a raise on one side, and she’s given me a wedge to put inside my current shoe until the new ones arrive.

Callipers
My callipers

I noticed straight away that it made my hip feel much more comfortable when I’m standing or walking but it hasn’t helped when I’ve been sitting and laying down. Maybe it will in time, but I’m not sure.

My back pain has also been much worse in the last few days. I’ll just need to see if this is a standard phase in my ‘pain cycle‘ or if it will last longer than that as we try and change my posture.