Tag: pain

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

A low pain day

Guys, it finally happened.

After weeks and weeks of high to moderate pain days, I finally had a low one. My “normal” pain days are low ones.

Yesterday things were back to my normal for the first time in ages!

I know this is all going to sound rather dramatic, but after being in so much more pain than usual for so long, I was starting to wonder if I would ever have a low pain day again.

God, I’m so, so happy right now.

Today isn’t shaping up too badly either, well, not pain-wise anyway. Obviously that could all change by later on tonight, but I’m going to enjoy it while it lasts. Even if tonight ends up being a bad CP night, for now a day and a half is enough.

Good days are still possible, and that’s all that matters.

Love, Nic xx

 

 

 

 

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?