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.

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

Allow me to re-introduce myself

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Me with my hair in plaits

It recently occurred to me that a  lot of new people have started reading View from a Walking Frame since Employable Me aired. I realised that not all of those people will know a lot about me or this blog, so I thought today it might be nice to re-introduce myself and explain a few of the things I natter on about on here.

So, here is a bit of a potted history of my life.

About Me

I’m pretty sure most of you will have worked this out already, but if you haven’t then I’m Nicola Golding (although I go by Nic) and I have cerebral palsy. I write a lot, read just as much and drink way, way, way too much tea.

I also have anxiety and depression that flares up a various points in my life, which I talk about a lot on here (and my YouTube channel too).

I have a boyfriend of nine years, two cats, a dog, and a degree in multimedia journalism.

That’s about as interesting as I get to be honest, but if you want to know more about me that isn’t related to my disability or mental health, then you can always look through my old Fun Fact Friday posts.

About my cerebral palsy

There are about 17 million people in the world who have cerebral palsy, and while I’m definitely not a CP (or disability) expert, I am perhaps the only expert in how cerebral palsy truly effects me.

To cut a very long story short, I was born 14 weeks premature and had a bleed in my brain, and that is how I got CP, or spastic diaplegic cerebral palsy to be specific. There are four main types of cerebral palsy, but mine is the spastic kind, which means I have muscle tightness. Diaplegic means I have it in two limbs (both of my legs). Although, my left arm is also impacted a bit, so some professionals call me triplegic (three limbs).

There is no cure for it, but I can learn to manage my pain and the various other challenges my disability throws at me.

The main problem I have is pain. There is not a single day where I am ever completely pain free. Some days are worse than others. Now I’m getting older (I’m 27) I’m noticing that the bad days are getting more and more frequent, and some months they outnumber the good.

The main thing is that I wouldn’t change my life. I wouldn’t take away my disability.

In truth, it actually makes me quite sad when people tell me they think ‘it’s a shame’ that I’m like this, because it’s really not.

 

Anyway, I think that’s enough about me. Why not tell me a little bit about yourself  in the comments.

Love,

Nic xx

 

 

GUEST POST – What I Wish People Knew About Chronic Pain by F R Kesby

Chronic pain is a common problem among the disability/spoonie* community but is often misunderstood by those who don’t experience it.  So, what do you need to know if you are supporting someone with chronic pain?

It’s not the same as any other pain…

There is a big difference between pain you know will end and pain that may never end.  A broken ankle or wrist hurts like fuck, I know that.  But a few weeks in a cast, an operation and some physio and that pain will (normally) go away.  You know that.  The pain from an ongoing condition, such as the widespread pain of fibromyalgia or chronic back pain will carry on forever and boy do you know it.  Every time there’s a slight increase or an extra twinge or a just a bad day you know that this could be your life for now on.  This could be the next twenty, thirty, forty, fifty, sixty years.  Next time you stub your toe or accidentally slam your finger in a drawer try and imagine knowing that will never stop.  That’s chronic pain.

It’s not ‘just’ pain…

When chronic pain moves in it doesn’t come alone.  Chronic pain will tuck itself in your spare room all well and good but soon enough you’ll find depression is crashing on your couch, anxiety is eating all the food in your fridge, insomnia is playing loud music at 3am and exhaustion is taking three hour bubble bath naps in your tub.  Pain is tied very closely to our emotions, that’s why some people find it harder to deal with than others, so raised pain levels can make all negative emotions seem worse.  This is also tied in with my next point…

It effects everything…

Imagine trying to go for a lovely walk along the beach with your friends.  There’s a lovely view, the promise of vinegary chips followed by whippy ice cream, interesting conversations and lots of laughs ahead of you.  But, you’ve got a massive weight tied around your ankle and one arm tied behind your back.  Think you’d enjoy that day?  No.  Imagine being in bed with a Hottie with a capital H.  They’re doing all your favourite things and they’re very, very good at it.  But, there’s a car alarm going off right inside your ear and the bed is made of that scratch jumper stuff that gave you a rash as a kid.  Would you enjoy that sex?  No.  This is what chronic pain is like.  It ruins EVERYTHING.  Sure, there are moments (sometimes even hours) of joy and wonder and all the good things in lives but chances are in that very same day there will also be tears and clock watching for the next dose of painkillers.  Much like sand (no, I’m not missing the beach at all!) it gets everywhere.

The meds are not fun…

Here is something I get a lot; ‘Ooh Morphine, fun, I wish I could have some of that!’.  No.  You.  Don’t.  It makes me sick.  It makes me confused.  It makes me dizzy.  It tastes like bleach sweetened with Calpol and comes in a bottle with such a good child lock my arthritic thumbs often can’t open it.  You really don’t want it.  And, surprisingly, neither do I.  I don’t take it because it’s nice or fun, I take it because the option is take something horrible or be in so much pain I can’t breathe.  We don’t take them for fun.  And, yes, we know it’s addictive, we know it’s bad for us, we have read that article about it, we know there’s an opioid crisis, we have indeed tried stretching, yoga, positive thinking, mindfulness, meditation.  Stop telling us about it.

It is unpredictable…

We’re sorry that we cancelled on your birthday party/hen do/Saturday night cocktails/shift at work/cat sitting/cinema trip/being able to wash the dishes – we we’re in pain.  We can’t know when we accept the invitation or make the plan that we will be in a lot of pain that day.  Often, we can’t even know if we’ll be in a lot of pain in the next few minutes let alone the next few weeks.  And this may come as a surprise to our friends/family/customers/bosses but WE HATE IT WHEN THAT HAPPENS TOO!  We hate cancelling, we hate phoning in sick, we hate missing out and we hate putting our lives on hold to deal with a pain crisis.  But we have no choice.  People think that chronic pain means not only constant but constantly the same and that’s not true at all.  It fluctuates, it moves, it changes patterns and some days it, even though it’s not actually much worse than normal, we just can’t handle it.  Constant doesn’t mean consistent, unfortunately.

But…we are still people.

Yes, we have terrible pain all the time and that means we can’t do some stuff, but we’re still people.  We want to be invited – just think about what you can do to make it accessible for our needs and make us know we aren’t letting you down if we can’t make it.  We want to come to things – just bear in mind that we may need to cancel last minute if we’re in agony.  We need human interaction – even if you just come over to binge watch OITNB and eat crisps, we will appreciate it.  We still like all the fun things you do – we just sometimes need to do them a bit differently.

Thank you all for reading.  I hope if you’re a fellow chronic pain sufferer you recognised some of yourself in this, feel free to drop us a comment on things you might want to add (or even things you disagree with, though I may cry!) and if you aren’t then I hoped you learned something about your friends who are.

*Spoonie is a term for people with chronic illnesses.  The term originally derived from the Spoon Theory which was used to explain the effect of chronic illnesses on everyday aspects of life.  It has since been co-opted by many online groups as a bonding and activism tool.

 

F R Kesby is a blogger over on Spoons, Loons and Toons as well a poet and storyteller.  She lives with fibromyalgia, chronic back pain and complicated neurological issues, among other things. You can find her ranting on twitter at @FayKesby or find Spoons, Loons and Toons on Facebook.  She is also chair of Leeds Savage Club, who are on Meet Up and Twitter at @LeedsSavage.