A love letter to Gossip Girl (and a moan about chronic pain)

Today is the fourth bad cerebral palsy day I’ve had in a row. I am sore, I am grumpy and I am tired. And, I’ll admit it, I’d kinda forgotten just how draining it is to have increased pain levels over ‘prolonged’ period of time.

And.

It.

Sucks.

I’ve had far more than four bad CP days in a row before, so this technically isn’t anything new. I should be a pro at dealing with this now. I’m 29 and I’ve had my impairment all my life after all. I’ve learned many, many life-hacks to make day to day living easier over the years, and I’ve learned ways of managing my pain to keep it a low-level as possible. But I’ve learned something else too: sometimes my pain is going to spiral and there’s nothing I can do about it. I just have to ride the wave and get through it as best I can.

A few years ago it felt all my posts on this blog were about stints of intense days that I couldn’t seem to get a grip on. They were so mentally and physically draining that I spent most of them crashed out on the sofa watching endless episodes of Gossip Girl because that seemed to be the only thing I could concentrate on.

I woke up expecting every day to be the same, if not worse, than the last one and I went to bed expecting the act of trying to get to sleep to be a nightmare in itself. At the risk of sounding like I’m in a work meeting (sorry to any of my colleagues reading this) I found a sort of battle rhythm and got through it as best I could.

The thing is, when you’re not in the cycle, that rhythm, that never-ending fog of only ever being half-present because all you can think is ‘this hurts, this hurts, this hurts’, you forget what it’s like. You forget what all your distraction techniques are to take your mind off it, your forget what that one sitting position that gave you five minutes of comfort was, and you sometimes even forget how low it can make you feel.

Every time you (or at least I) swear that you won’t forget this time. How could you possibly forget feeling like this, anyway? How can you possibly remember anything else from that time period other than wanting it to end? But you (or at least I) do. I forget every time, and I always forget just how quickly I forget too. Within a matter of days the relief that it seems to all be over for now wears off and you put the memories to the back of your mind and deal with all the things that the pain put on hold.

You forget because you have to, because you’re desperate too, and because it’s just so amazing to finally be able to thing about something – anything – else again.

Then, when the next wave comes I (and maybe you, too) feel a little bit guilty that I let myself forget so easily. I forget the crappy bits and just choose to remember that I enjoyed watching 42,000 hours of Gossip Girl far more than I would care to admit. And yes, sometimes I even think about how grateful I am that the show exists to keep me company on days like that. I’m genuinely not sure how I would have got through that rough patch a few years ago without it.

And so today, on bad cerebral palsy day number four, I had a hot shower, put on my uncomfortable-but-useful orthopaedic shorts, and watched Gossip Girl, Because even through all the pain, sleep deprivation and the massive mental health crash that came with it, I’ve somehow managed to remember that Gossip Girl is what got me through.

Let’s hope it does again

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.

It’s already been a long year…

Hello, hello – how are you all? I’m pretty sure I’m not the only one who feels as though 2020 has lasted about three years already and we’re only just halfway through. Those of you who follow me on Twitter might be aware that my dad died of cancer a few weeks ago. I won’t go into too many details here as he wouldn’t want me to. I’ll only say that he got diagnosed in 2019 and passed away peacefully in April 2020.

I’ve been working full time from home for a last few months because of coronavirus. While I don’t miss my commute, I miss seeing my colleagues face-to-face rather than on video chat that may or may freeze every 30 seconds. I’m working on a shift pattern, which is new for me. Sometimes I’ve even done a mixture of early shifts and late ones in the same week, which has been interesting when it’s come to managing spoons. I might share some of the strategies I’ve been using to try manage my pain levels, energy levels and trying not to burn out mentally.

I had actually been planning on moving out this year to somewhere closer to work purely so that I could cut my commute down…needless to say those plans are now on hold for the foreseeable future. My life has changed a lot in the last 12 months; I got a new job at work, my 10 year relationship ended, all the things that happened with my dad…

I think I just want some time ‘be’ with the life I have now for a little. If such a thing exists, but I’m not convinced it does.

It’s not all bad news though. Slowly but surely I’m starting to write again, I’ve gone back to therapy (via Zoom) to keep and eye on my mental health and my hip and pelvis pain has been loads better while I haven’t been leaving the house.

In fact, I’ve hardly had any bad cerebral palsy days at all, which is wonderful

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.