I hope life’s treating you well?
I can’t quite believe that we’re in April already, and I’m sure I some of you can’t either. I started yet another new job at work in March! Yep, that’s right, the girl who couldn’t get a job at all has had three different ones in under a year! I can’t quite believe it. I’m still at the same place, and it’s another temporary contract, but it’s also a step up in some ways. I feel like I’m slowly starting to get my head around it so yay, me.
It’s not all smiles and rainbows in Nic Land at the moment though. I’ve finally had my letter telling me that it’s time for me to switch from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). For those of you who don’t live in the UK these are two different, non-means tested, disability benefits that help people pay for things like care packages and any extra costs they might incur because they need extra support with daily tasks. The former is being replaced by latter for reasons I’m not going to try and explain because I don’t entirely understand it myself.
I was on indefinite DLA prior to having to re-apply for PIP, and being awarded PIP isn’t guaranteed. Now I have to go through the process of filling out lots of forms about how my cerebral palsy impacts on me, and being assessed to see if I’m entitled to it. It’ll be a long process, and it’s one that I’m only at the start of.
I have some very kind and well-informed people helping me with this. I’ll keep you posted, and try and pass on as much of their advice as I can to any of you in a similar situation. I’ll admit I’m clueless on this one.
In other news, the Mystery Hip Pain that has been a semi-regular feature in my life for the last few years appears to be back with a (very painful) vengeance, and it’s fair to say I haven’t missed it. I’ve been working from home a lot more than usual because it feels like bone grating on bone whenever I move, and it keeps locking at very unhelpful times.
Luckily, I have an appointment with my consultant next week. So far, we haven’t been able to work out what causes it or why, but I’m hoping we’ll have a breakthrough this time.
I’ll keep you updated.
Autism is the reason acquaintances don’t invite me to events. And it’s the reason I don’t care. I have my own world.
Autism is the reason I notice every judgmental look on a person’s face when my son has ‘Happy Flappy’ hands. And it’s the reason I’m too practised at masking to show my rage. For now.
Autism is the reason I use the disabled toilet if the women’s has queues. My disability is invisible. But not if I’m forced to endure strip lights, chatter and dryers.
Autism is the reason I had so many non-starter relationships. But I braved online dating. I married my best friend.
Autism is the reason I find reading people difficult. But it means if I take the time to get to know you, I’ll know you better than you know yourself.
Autism is the reason I stand alone at the school gates at home time. But also how my son’s learned it’s ok to value your own boundaries.
Autism is the reason I live in comfortable clothes. It’s the reason I’ll never be a slave to trends.
Autism is the reason I find writing easier. But it’s how I’ve reached you today and I’m grateful for that.
As Hayley’s Twitter bio will tell you, she is an autistic woman, mother, writer, wife, carer, and so many other things.
You can read her blog at: and find her on Twitter and Instagram
All I wanted was cat biscuits and some chocolate.
All that stood between me and said cat biscuits and chocolate was a self-service check out.
Sounds simple, right?
Wrong. Wrong. Wrong.
There are no words for how much these things annoy me. They annoy most of the able-bodied people too; but when you have mobility problems like I do, they are a total nightmare.
If there is another person operating the till they can obviously see this and understand it, unlike a machine who expects me to move at speed. A chashier often help me do my packing and give me my change in small bits, all without constantly asking me to please take my items.
I know I could always ask a staff member in the shop to help me, but the staff supervising the area is often busy helping people who’ve found themselves dealing with an unexpected item in the bagging area, so I’ve developed a few strategies to try make things easier:
- As I often wear jackets of hoodies, I try and get my money out before I even start and put it in my pocket so make it easier to get to. Obviously, I only do this if I feel safe to do so. Otherwise I put up with the machine asking me if I want to continue while I fumble to get cash out of purse.
- I take a bag that is as wide as possible so that I can hang it on the side of my walking frame and just drop things into it, rather than having to cram they all into a smaller bag that won’t open out for me properly
- If I have a friend with me, I ask them to help
What do you think about self-service check-outs?
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?
Hello and welcome to today’s edition of Nic is in Pain and Feeling Very Sorry for Herself.
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?
I thought it was about time I gave everyone another cerebral palsy update.
I talk about all kinds of stuff on my YouTube channel, not just disability stuff. Check it out here if you haven’t already.
I made a new video about things that I’m scared/nervous about doing because of my disability, cerebral palsy.
I hope you all understand what I was trying to say with this video. If you like this one, then why not go check out my YouTube channel?