Vlog: Cerebral Palsy Update: July 2017

Here’s a new cerebral palsy update video where I talk about pain, hospital appointments, Baclofen and more!

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The Unlimited Company Leeds Store Opening Day

Disclaimer: I have not been paid to write this post. I was invited to attend this Bloggers  Breakfast event by The Unlimited Company from Simplyhealth, where I was given food, drink and a free opening day goodie bag – more on that last part later!

I’ll admit that I had no idea what to expect when I accepted the invitation to go and see the new The Unlimited Company Store in Kirkstall Bridge Shopping Park, Leeds. I came away feeling really impressed and encouraged by what the future could hold for me as a disabled person.

Not only did they sell items that would make life easier for people with all kinds of disabilities, not just physical ones like mine, but they have a sensory room and a huge disabled toilet with a hoist, adult-sized changing table, and movable sink. And we all know how I often have some strong opinions on disabled loos.

I think the thing that appealed to me the most was that the shop has a resident Occupational Therapist who is on-hand to offer help and advice to anyone who needs it. She spent ages showing me a lot of things they had for people to look at and try out.

There are just so many things that I didn’t know existed. They have an adapted kitchen to show people what they can do now, and just how stylish they are. It didn’t have a ‘clinical’ feel to it at all, as many of you probably agree some of these things do have. I felt really optimistic about what my ideal home could look like in the future. Well, if I ever manage to get on the property ladder, that is. That’s a debate for another time.

Remember that rant I had about clothes shopping with a disability? Well The Unlimited Company even had that covered too, because they stock clothes from a company called The Able Label. I’ve never heard of these guys before, but I’m definitely going to be checking them out. They make clothes with velcro instead of buttons and zips! How amazing is that?

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Talking to in-store OT Rachel about The Able Label: photo courtesy of The Unlimited Company from Simplyhealth.

If all of this wasn’t enough, I was lucky enough to be able to meet members of TeamBRIT. I’m not going to lie, sport would not be my strongest subject on a quiz show, but I have to say that car looks very cool. And people were impressed by how my walking frame Ivy and I had managed to colour-coordinate with it. I wish I could say I’d planned it that way all along, but I’m not that good.

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Meeting TeamBRIT – photo courtesy of The Unlimited Company from Simplyhealth.

My goody bag had a TeamBrit cap in it too, (and they gave me an extra one for Rob, thanks guys) this totally makes me an honorary member of the team now, right? Right?

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I suck at selfies

They also gave me a really cute mini-hot water bottle which will be a huge help with my pelvis pain, or any other pain for that matter.

And what was the hashtag of the day, I hear you ask.

#nolimitsjustliving

Speaks for itself, doesn’t it?

 

FIND OUT MORE:

If you want to find out more then I’m going include social media links below:

The Unlimited Company

Facebook: https://www.facebook.com/TheUnlimitedCompanyUK
Twitter: https://twitter.com/theunlimitedco
Website: http://www.theunlimitedcompany.co.uk/

Simplyhealth

Facebook: https://www.facebook.com/simplyhealthuk
Twitter: https://twitter.com/SimplyhealthUK
Website: https://www.simplyhealth.co.uk/

The Able Label

Facebook: https://www.facebook.com/TheAbleLabel/
Twitter: https://twitter.com/theablelabel
Website: https://www.theablelabel.com/

TeamBRIT

Facebook: https://www.facebook.com/TeamBRIT/
Twitter: https://twitter.com/TeamBRITracing
Website: http://www.teambrit.co.uk/

 

 

 

 

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?