What 4 years of blogging has taught me about my disability

As cliché as it sounds, it doesn’t seem like two minutes have passed since I hit publish on my very first post, inviting you all to share my journey as a young woman with with cerebral palsy living in the UK. Yet, here I am still typing away, only the year on my laptop is telling me it’s 2017 now.

I might not have been around as much lately while I try look after my mental health, but View from a Walking Frame is always at the forefront of my mind. Not only has this tiny part of the internet helped to give me something to talk about at job interviews as I still try to find full-time employment, it’s been my lifeline. Perhaps the most important thing, though, is that it’s taught me a lot about my own disability. And today, I thought I’d share those things with you:

 

I need to learn to let go

One of the toughest journeys I’ve been on with this blog is learning to let go of so many things. Back when this blog started, I used to shy away from talking about my bad CP days. I thought everyone reading would think I was being an ungrateful whimp. I thought you’d only want to read about the good days.

I was wrong. You are all so kind and supportive and understanding.  You are all kinder to me and more supportive of me than I have ever been to myself. I’m learning so much from all of you.

Which leads me onto…

I need to stop worrying about what other people think

My bad CP days are mine, and even though I can try and explain how they make me feel, only I know the truth. I should be allowed say I’m hurting and not worry about being judged.

My mental health is just as important as my physical health

Honestly, opening up about my mental health as well as my cerebral palsy on this blog has been one of the best things I’ve ever done. You’ve all helped to make this blog a place where I feel I can be honest, so thank you.

When I started View from a Walking Frame it was purely about disability. It is about so much more than that now. I never realised or paid attention to the emotional impact of a bad cerebral palsy day until I started talking about it on here. I guess I didn’t really think it was important, but it is. I’m learning more and more about how my disability impacts on my life every day, and I have blogging to thank for that.

Naps are good. Rest days are good. It is important.

You guys have all helped me realise that needing a rest day is perfectly normal and I don’t have to fight against my body every second of every day. In fact, I might catch some Zs after I’ve written this post. #Sorrynotsorry

Again, thank you all so much for your support. I hope my blog helps some of you even a tiny bit more than it helps me. If it does, then it’s all worth it.

So, who’s up for another four years? I’m game if you are!

Love,

Nic xx

 

 

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Feeling sorry for myself

Yup, today has been all about me throwing myself a massive pity party. I know I shouldn’t but I am, and even though the only thing I hate more than feeling like this is admitting to anyone that I’m feeling like this, I’m going to tell you about it anyway. There’s no point in me writing a blog about my life with cerebral palsy if I’m not going to be open and honest about the rubbish bits, is there?

It started as just a bad mood. Well, less of a bad mood and more of a difficult depression kind of day – I can tell the difference, because, on difficult depression days, the thought of getting dressed makes me want to cry. Today was one of those. Nonetheless, I managed to pull on some jeans and an over-sized jumper and go pick up my new glasses.

Then my old friend, Mystery Hip Pain kicked in. And it kicked in hard. I’ve had pins and needles in my hip almost constantly from then on and sitting still is hard because getting comfy is pretty much impossible.

If this carries on for more than a couple of days I know that the best thing to do will be to ask to go back to my acupuncturist. She’s amazing at getting the pain to go away again, but I’m always aware of the fact that it’s only about two months since I was last discharged for her service and I’ll feel like I’m being greedy and having more than my fair share of appointments. I know that this shouldn’t even enter my head, but it’s hard not to think about in when everywhere you turn people are talking about how strained the NHS is.

And now I have backache too. Pfft.

Life Update September 2016

Oh my gosh I’m not gonna lie, I actually have no idea where to start with this post. There has been so much going on lately. I think I’m just going to break everything down into sections, or as best as you can with a life update anyway, and hope that it makes sense.

Cerebral Palsy Stuff

This is the most obvious place for me to start, but it’s probably the hardest.

I’ve been having a pretty bad CP month to be honest. I tried to do what I said I was going to do in my last blog and exercise more to try make myself feel better. I feel like it made things worse and didn’t really help with my aches and pains. Things have been a bit better over the last couple of days even though I’m full of cold. I’m hoping I can take this as a good sign because being ill usually makes bad CP days seem even worse. I’ve decided that I’m not going to push things too hard until I’m better, and then I’ll just have to see what happens.

Writing Stuff

Writing and editing is still happening. Even though I’m working on a massive edit of one of my novel projects I’m still trying to write long form here and there too. The editing is taking up lots of time and energy, but hopefully it will be worth it in the end.

I’ve recently got into watching slam poetry videos on YouTube, and I’ve decided that it might be nice to try enter one myself next year. I’ve not written slam poetry before, but I’ve been practicing and I’m enjoying it. Hopefully, I’ll write something I like enough to post on YouTube soon.

YouTube Stuff

I haven’t uploaded on YT in a while, but I have been going back through my old videos and starting to add subtitles. It’s going to take ages, to get through them all, but I will do eventually.

I think that’s it for now, how’s everything with you guys?

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?”

The pain has gone

When I wrote my last post I was in rather a lot of pain in my back and chest (muscular pain). It had been bothering me for a couple of weeks, but I’m pleased to say that over the course of the weekend it seems to have settled down and gone away. I’m not sure what I did to get it to go away, but obviously I’m pleased it has!

Now I just have to try make sure it doesn’t come back for a while, although it does that sometimes, but this was the worst bout of that type of pain that I’ve had for ages, and I’m definitely glad to have a break from it.

Continue reading “The pain has gone”

Snow makes me sad

It was snowing when I woke up this morning. Thankfully, I’d already had a bit of a warning because my friend had txt me. I think we all know by now how I feel about snow. It’s hard for me to get around in, even if there’s only a little bit on the ground. Cold makes my muscles tighter and I have more bad Cerebral Palsy days. I don’t like it. Nope.

It was coming down pretty hard when I woke up, but it wasn’t really sticking at least. There wasn’t much natural light in my house, and there still isn’t really. I’m just demotivated to do anything.

I’m still really tired too, but hopefully I’ll manage to get myself going soon and have a productive day.

Back into a routine

I can’t believe it’s been a week since I last updated this blog! I feel like all the posts on here lately have been about pain and bad cerebral palsy days and my anxiety and low mood. I think it’s important for me to talk about all that stuff, but it’s nice to be able to have something more positive to tell you too.

With all of these other things going on lately I sort of fell out of the routine of writing and job hunting and spent a lot more time than I would care to admit binge-watching Netflix and drinking way more tea than normal. It was nice to take it easy, but as someone who judges how good her day has been based on her productivity levels (I know, I know), it didn’t make me as happy as you might think.

It took me a while, but I think the bad CP days are gone for now, I’ve started being able to sleep again (and at a slightly better time than 2am, too!) and most excitingly of all I’ve got myself back into the swing of writing and editing. I feel like I’m making progress on my main project.

I made a YouTube video earlier this week about the aftermath of a fall in which I banged my hips and my already bad hip. I expected it to have quite a big impact on me for a few days, but it wasn’t all that bad. Yay!