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

 

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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

#ThingsILearnedtoAccept

The above hashtag has been trending on Twitter today. I soon as I saw it I knew that I just had to contribute. The differences between how I think and feel about my disability, and perhaps more importantly, how I thought others think and felt abut my cerebral palsy, have changed drastically over the past two years since I started filming Employable Me.

It’s been a year since the series aired now (yes, really) and people still stop me in the street to tell me how watching my journey impacted them. Yes, the series ultimately led to me getting a job, but it changed my life in so many other vital ways that there is no way I could do them justice in a single tweet, so I thought I’d blog about them instead.

The only person who expected me to be at my physical best all the time was myself

Perhaps the most important thing I learned was that no one expected me to have my ‘best days’ every day. People know that there are some days that I might need to move around less than others, or stretch more. They are okay with that. I was the person who wasn’t. And by trying to keep my pain to myself; to struggle doing things on my own just because I can usually, was just making my life more difficult unnecessarily.

No one actually minds if I take stretch breaks in the office

I used to worry that people would think I was being lazy or weak if I took a stretch break in the office. No one does. They prefer it because then I can concentrate better and actually perform better because of it.

Asking for help with the little things whenever I can actually makes life easier

Guess who actually asks bus drivers to get the ramps down on the bus if they don’t offer themselves? This girl! Guess who doesn’t feel guilty about it? Me again! And, best of all, guess who can actually admit that it annoys her if they don’t automatically ask me?

I know this sounds utterly bonkers now, but I never used to feel like it was acceptable to feel annoyed when things like this happen, or when a building doesn’t have and lift or ramp, or when there isn’t a dropped-kerb on the road so I can cross without having to lift my walking frame.

I used to feel like there was pressure to just accept these things without complaint. It turns out that vocalising these feelings in a polite way actually helps people understand the challenges I face in day-to-day life and the help I, and a lot of other people in similar situations, need.

My anxiety is something I’ll have to manage for the rest of my life, and that’s okay

I’ve struggled with anxiety, that often manifests itself as being afraid of germs, since I was about eight years-old. I’ve been in and out of therapy for it since I was about 10. I used to get incredibly frustrated that it was something that I couldn’t get away from, or ‘cure’ myself of completely.

Just when I thought things were simmering down, something would happen to trigger it again, which in turn would make me even more anxious to the point where even sitting still became impossible and I’d just pace the house muttering to myself and crying because I was worrying about so many things it was the only way I could focus on one thought at a time.

Accepting that flare ups are just going to be something that happens to me every now and then takes away that extra layer of anxiety, and ultimately, makes me it easier for me to manage my mental health the rest of the time.

There are so many more that I could mention, but I think this post is long enough for now, don’t you?

2019: A new year, a new job and a new wheelchair on the way

Hello everyone, and Happy New Year. I actually meant to write this post way before now, but those of you who’ve been reading this blog for a few years will know that New Year is a massive anxiety trigger for me, what the all the pressure to become a better person, achieve more, eat less chocolate, blah, blah, blah; so I decided to lie low on social media until all the fuss had died down.

Anyway!

Things have been pretty busy in Nicland over the last couple of weeks. My family and I made it through the festive season without any arguments, I finished in one role at work and started another, I officially got another year older (happy birthday to me) and I have a new wheelchair on order.

I’m not sure how long it will take for my new chair to actually arrive, but I’m already thinking of new names, and wheelchair services has give me new wheels and brakes on my current one to tide me over.

2018 was a busy one too, and in amongst it all I said goodbye to my walking frame Ivy and am now the proud owner of an identical one called Netta. It took me a long time to settle on a name for this one, but people at work helped me choose and now I’m pretty pleased with it. She moves so smoothly compared to Ivy, whose wheels were starting to hang by a thread, that I feel as though I have to practically jog to keep up with her.

In other news, I’ve also renewed the domain name and re-mapping on this blog too, so it looks as though I’m sticking around for a while longer yet!

Getting on my soapbox about why attitudes towards sex and disability need to change. Again.

Yet again I’ve found myself getting on my Twitter soapbox about why attitudes towards disability and sex need to change.

You’re probably all bored of me talking about this by now, but if you’re not, you can head on over to my profile to see the whole thread of tweets I made.  Here’s the first one for you:

Believe it or not, I’m actually sick of talking about this too. I’ve mentioned it on this blog and I’ve even blogged about it for the charity Scope too.  Yes, my mother read it and no, I’m not embarrassed. My dad chose not to read it, but if he had, I still wouldn’t have been embarrassed because why should I be?

Rob and I were together for 10 years and it took me a long time to stop feeling like I was doing something ‘bad’ by having a physical relationship with him .

(Yes, things are rocky right now, but we’re working on them and we’re in a good place. That’s an update for another time. Maybe.)

I spent far too much of my teenage years feeling ashamed, afraid and embarrassed. In fact, I used to wish that I wasn’t attracted to anyone, either sexually or romantically, because of society’s attitudes towards sex and disability. I felt like it was somehow wrong of me because I was always made to sex and relationships weren’t supposed to be for

But I’ll keep talking about it until we manage to end the stigma, because we will. One day.

Back on the job hunt

Well everyone, after almost a year of full-time employment in digital communications I’m back on the job hunt again. My contract with my current employer has always been fixed-term.

My initial contract was only supposed to be for six months at first, but, by the time it ends on the last day of December, I’ll have been there (as a paid member of staff) for just two weeks shy of a whole year. I’ve actually been there a little long than that though, because I started as a volunteer before that.

I’m trying my best to to freak out too much. This time last year I was in my fifth year of unemployment after graduation, the BBC documentary that I took part in (Employable Me) hadn’t aired yet, and I was in a very strange kind of limbo between knowing that it wouldn’t be far away. My depression was so bad that I found it difficult to bring myself to get dressed every day.

Things have changed so much and I’ve mentally come a long, long way. I like to think I’m good at what I do (mostly social media-based things), and it turns out that I’ve become pretty confident at writing analytics reports, which is something I never thought I’d say. The sight of numbers usually makes my brain cry, so I’m actually, if I can be very un-British for a minute, pretty proud of myself.

There. I said it.

So yes, I’m back on the job hunt. I’m hoping it will be a bit easier this time around, now that I’ll have a year’s worth of experience under my belt.

Wish me luck,

Nic xx

We Broke Up

Rob and I broke up.

There, I said it.
I’ve actually been meaning to say it for the last couple of months but I haven’t known how. I’ve been hiding from it, and So, I’ve been hiding from this blog, and, I suppose, all of you. I haven’t wanted to carry on as if nothing had changed, because that didn’t seem fair, but neither did writing about it as soon as it happened. Which is, of course, what I really wanted to do.
Really, what it comes down to is:
1: Yes, he broke up with me
2: No, I didn’t see it coming
3: Yes, we’re trying to stay friends.
4: And Yes, it’s really flipping difficult
So that is where I am right now, but it’ll be okay. I got a new walking frame last week (new name to be revealed soon) and I have Botox in my legs again next week.
The world is still spinning and I’m still here. I’m not thinking about dating yet, other than thinking about how I never actually want to think about it, let alone do it.
Here’s to a more regular updates from now on, if I can stay awake long enough.
(Turns out working full time and commuting around 3 hours a day is also really flipping difficult!)
Love,
Nic xx