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.

Cerebral Palsy and Migraines

As I write this I have a pretty rotten headache. It’s not quite crossed the boarder into migraine city yet, but I wouldn’t be surprised if it does. The main bulk of the pain is nesting in the nape of my neck, so I think I must have been sitting in a weird position.

I don’t get migraines too often now, but I feel like I had them every day from the age of about 14 to 16. They used to make me go dizzy and fall over.

When I was 14 I started getting horrible shoulder and neck pain. This was back when I was still knock-kneed, and stood with one knee behind the other. I did this so much that my kneecaps had rotated so that they faced inwards instead of outwards.

In other words: my posture was poop, and the way I stood back then gave me migraines. My doctor gave me some stronger painkillers, and my physio at the time tried some intensive therapy on my shoulders to lessen the pain, but we all knew that there wasn’t much we could do until I’d finished my GCSEs and could have operations to reset my knees.

Once I had my hip surgery and the muscle-lengthening surgery afterwards, the migraines went completely. I Hardly even get headaches any more. I’m so, so lucky. I wouldn’t wish them on anyone.

Pain Update 10/08/17

Hey guys,

My pelvis pain finally seems to be settling down. Well, by settling down, what I actually mean is the pain isn’t constant any more and is a lot less intense most of the time.

That said, when it’s bad, it’s pretty freaking bad.

Short bouts of intense pain is something I’m used to dealing with. I usually have a low level of pain on a constant basis, and the bad days are getting more and more frequent. I feel like I’m starting to get the hang of dealing with them.

What I don’t think I’ll ever get used to is intensely painful nights, and my pain is always, always worse at night. I put so much pressure on myself to try and get a good night’s sleep. And, there aren’t as my distractions.

Things are much, much better than they were a few weeks ago though so I can’t complain.

If anyone has any advice on dealing with bad pain nights, I’d love to hear it!

How are things with all of you?

 

A low pain weekend!

Guys, I am so happy right now. It’s Sunday evening and I can honestly say that I’ve had the lowest pain weekend that I’ve had in a long, long time. It feels so amazing to be able to say that after so many bad cerebral palsy days.

Honestly, I don’t think I can remember the last time I had so little pain – probably because not all that long ago, my day-to-day aches and pains were easy enough for me to push to the back of my mind and not really notice.

God, I miss those days. I hate to say it, but I think Bad CP Days have become my new normal. Let’s hope it’s just a phase. I keep telling myself it’s just a phase, but to be honest, I feel I’m in my embarking on a long-term relationship with bad CP days for the moment.

I’m mentally preparing to be in it for the long haul. The thing that people never tell you about pain is that it’s perhaps even more emotionally exhausting than it is physically exhausting, but this weekend has given me a much needed glimmer of hope that I’ll get through this – whatever this is – and manage to get my old mental and physical self back.

The only time pain has really, really bothered me this weekend was on Saturday night (thank you, Left, Hip. I love you, too) and the rest of them time I’ve felt like I have been the one in control of my CP.

I feel so empowered and optimistic. I’m looking forward to the next few days, rather than dreading how tired I’m going to be, and that is how life used to be. How it should be.

I’m going to count this as a victory.

Blogging about your own life is hard

This might seem like a really obvious thing to say, but blogging so openly about my own life with cerebral palsy is hard.

One of the most important things about this blog for me is that I keep as honest as possible. It’s not easy for me to admit that getting on buses scares me because of the disabled access, that I can’t tie my own shoelaces, or, that on occasion, I have fallen over and wet myself on the way to the toilet. And yet, here I am, doing just that.
People who read this blog now will probably have a very different opinion of me from those who have been reading since the early days.
This makes me sad.
I worry that people will see me as someone who can’t, rather than someone who can do and does do.
When I first started this blog almost a year after graduating from my multimedia journalism degree, I worried a lot about how this blog would look to potential employers. I worried about whether or not my inability to tie my shoelaces might come across as an inability to perform work-related tasks, like sending e-mails. I worried about whether or not I should mention that I like to go to the pub with my friends.
Then people started to read it. People with CP, loved ones of people with CP, or people who just found my blog interesting. These lovely people left comment after comment and I realised that a lot of them had to deal with things that I do.
I started talking about my bad days, my pain management  (which I’m pretty good at most of the time) and the surgeries I’d had as a teenager. People responded. People related. People cared.
Worries about what employers would think faded away, I stopped paying attention to my stats. I was being me. I was having fun.
People were grateful for my posts, especially parents of children with CP. Even if the posts weren’t always happy ones, people kept commenting. Your comments and support have kept me going over many a bad CP night.
Talking about my mental health was harder. The day I came home from the doctor with antidepressants I cried. I was so very ashamed. I’d struggled with my mental health since childhood. I felt like I had truly failed at life.
I didn’t talk about it for a while. I didn’t think anyone would read or understand-  but they did.
They still kept coming back. You still kept coming back.
My posts have not been regular lately, I know that. People still keep subscribing to it via WordPress, even though the mood of this blog has changed.
I’m going through a rough pain patch and a rough mental health one too. I’ve recently upped my meds again and I’ve just had a x-ray to see if that will tell us anything about my pelvis pain.
My long-term physio has just retired so I’m on the waiting list to see a new one.
My therapist has just referred me to another  one because he felt that I needed to ‘step up a level’. Yup, that means I’m on another waiting list.
My circumstances have changed a lot in the last four years. I’m still looking for permanent work. I have freelance work, but nothing full-time, which is what I want, need and am capable of.
I was apparently written off when I was younger, but got a first in my degree. I was born at 26 weeks gestation, 26 years ago and still survived. My parents were told I’d walk around a supermarket ‘at best’.
I walk round supermarkets for fun. While using a walking frame and carrying a basket of shopping.
I’m both sorry and not sorry that this blog isn’t showing the best me at the moment, but that doesn’t mean I can’t be that again.
With a job to distract me from my pain, a good medical team, and understanding people around me, who knows what might be possible.
Thank you for all your support,
Nic

My Pelvis Pain

Hello and welcome to today’s edition of Nic is in Pain and Feeling Very Sorry for Herself.

Again.

It case he title of this post didn’t give it away, the culprit this time is my pelvis. This is kinda unusual for me. My pelvis is not one of the body parts/ muscles that like to give a hard time, so I don’t really know what to do about it.

The pain kept me awake almost every night this week and I think it did keep me away from sleep every night last week. Getting comfortable is just impossible, and I’ve reached the point now where I’m tempted to give up on trying to sleep at night all together.

I think I’d rather just nap during the day when I’m tired enough to rather than try and force myself to stay awake all day and not be able to drop off at bed time, y’know?

Sleepless nights are unpleasant, but bad cerebral palsy nights where I’m in pain and everyone is the house is sleeping are just so freaking lonely.

I don’t usually cry over physical pain, but I’ve come close this last fortnight or so. I don’t know how many more bad CP nights I can take.

How are you all doing?