Tag: Cerebral Palsy

Cerebral Palsy and Life Update May 2016

I know I posted a cerebral palsy update on my YouTube channel about a week ago, but a lot of CP-related stuff has happened since then, so I thought I’d do an update here, with some other stuff from my general life thrown in too.

Let’s start with the CP stuff:

So, I had my Botox appointment earlier this week, I think I had two injections in each leg this time. There’s not much else to say about that really. It was fine. It always is. I just have to make an extra effort to do my physio now.

Some of you might know that my mystery hip pain has been niggling at me over the last couple of weeks because I tripped over, yet again. Well, my family helped me do some of the stretches that I can do for myself and it seems to have gone again. I didn’t need to ask for more acupuncture, which is a good sign, I guess…

Anyway, moving on to general life stuff. Things are getting busy in this department:

  • I’ve got some more freelance social media work, yay!
  • Writing is still happening. Slowly. But it is happening!
  • I have two trips coming up, one with my family, one with Rob. My family and I are going to London to see some of our other family members. Rob and I are going to Scarborough for our anniversary. We won’t be going to the beach though. He hates water and I hate sand so avoiding the beach will probably be our top priority.

Well, that’s everything that’s going on with me, what about you?

NHS Appointment-related guilt

Yesterday I uploaded this cerebral palsy update video on my YouTube channel. In it I talked about how I’d fallen over onto my hip that always had The Mystery Hip Pain (TMHP). TMHP had gone after some acupuncture appointments, but now it’s back and  I’m faced with a dilemma – do I ask for more acupuncture?

It might sound like a no-brainer. It seems like the obvious thing to do, doesn’t it? Let’s nip it in the bud now and then we can all move on. I know that it makes perfect sense. I just feel so guilty about it.

It’s only been a couple of months since I was actually discharged. And yes, I know my acupuncturist told me to ask for a referral before things got really bad, but it’s just so soon after the last lot. If I go back now I’ll feel like I’m being greedy and taking more than my fair share of appointments – especially as I get them on the NHS.

But then I know that they’ll be a waiting list and God knows how long my name will be on that  before I actually find myself back at the hospital getting needles stuck in me again. It could be weeks or it could be months. Who knows what  TMHP will be like by then?

The problem is that I know I’ll feel psychologically a lot better about it if I hag on another month, even if that might make me feel physically worse. I know what I should do, but I also know what I wanted to do, too.

Four years on from uni

So I had an entirely different post planned for today, and then Facebook (not so kindly) reminded me that today marks four years since I finished my multimedia journalism degree. Now I’m kinda freaking out.

I’ve been told that I was as good as written off by some people when I was primary school age. People didn’t think I’d achieve all that much, but as soon as I learned university was a thing I knew I HAD to go.

Then, when I got to the age that it was time to seriously think about these things my mum started to get nervous about me moving away, my dad started researching disabled access at unis, and some people started to tell me they thought I should stay close to home. At which point I told them, in slightly politer terms than this, that there was not a chance in hell I was staying close to home if I could help it. I was moving out, and that was that.

There was a point when I did almost go to a university 40 minutes away from where I lived, but then I fell in love with Teesside University, about an hour and a half or two hours away depending on traffic. The staff there were all really supportive, and the university employed someone to help me physically get around campus so that I didn’t get stuck anywhere and he carried my stupidly heavy bag for me.  (Sorry about just how much it weighed if you’re reading this by the way!)

In the end I got a great result on my degree, but perhaps the biggest thing I achieved was a whole new level of independence and and physical fitness. I overcame my nervousness about getting the train on my own so I could go home and surprise my dad for his birthday. I learned that I could get by on a few visits from a supportive living team a week, and some help from my housemates, and I walked almost everywhere because I didn’t have a car and was too nervous to get the bus by myself.

Even on my most down and lonely days when I feel bad that I’m of where I hoped I’d be when I graduated, I could never think it was all a waste of time, even if I am pretty convinced I’ll be forever in debt.

Which one is it again?

The thing about having botox injections to help  with my cerebral palsy related muscle tightness is that my appointments can be made up to six months in advance. Needless to say that I usually have a rough idea of when they’re going to be, but the exact date doesn’t tend to stick in my brain until I decide to double-check when I know I’m getting close.

The other day I found myself thinking that I must be about due to go for another round of injections. My hospital usually text me or ring me a couple of days in advance to double check that I can still make it, so I didn’t think I’d missed it, but made a note that I should probably either try and find the letter, (which I usually stick to the fridge, but hadn’t this time), or make a few phone calls.

Continue reading “Which one is it again?” →

Three years of blogging!

Can you believe it’s been three whole years since I decided to take the plunge and hit publish on my first post for View From a Walking Frame? I’ll be honest and say that it some ways it feels like it’s been three very long years and in others in feels like it’s only been a couple of months. Yet here I am still typing away and here you are still reading.
I’ve changed a lot in these last few years, both as a person with cerebral palsy, and as a person in general when you don’t take my CP into account at all. In my life as a person with a disability, I’ve noticed that I’m having more and more bad days, and that I’ve been trying more and more things to help ease said bad days with varying degrees of success. I’ve extended this blog and now I’m a vlogger on YouTube as well.

I decided to open up to all of you about my mental health and talk about my anxiety and low moods. Sometimes I think I talk about that more than I talk about my cerebral palsy, but you’re all lovely and none of you seem to mind. These things especially have dragged me through the ringer quite a bit over the last couple of years, and this blog is always here to help me deal with that and so are you guys.

I like to think I’ve posted on this blog fairly consistently over the years, even if I have had the odd quiet patch. Having a quiet patch used to make me feel guilty, which would make me feel anxious and down, but I’m slowly starting to accept that it’s okay to write less sometimes. This blog will always be here when I feel like  I have something to say or like I need some extra support.

Seriously, knowing that guys are out there has helped me get through some pretty low times, so thank you. I only hope I do the same for you in some way, no matter how small.

So, who’s up for a similar kind of post this time again next year? I know I am.

Love,

Nic xx