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

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.