A blog about an average girl who just happens to have Cerebral Palsy
Author: Nicola Golding
My name is Nic, I'm 26 and just happen to have Cerebral Palsy that I've had since birth. It mostly impacts on my legs and my left arm and so I use a walking frame. When I'm not blogging I can usually be found making YouTube videos, reading or trying to write a novel.
My new, made to measure work chair that was recommended on the back of my Access to Work office assessment finally arrived at my office, complete with a beast of a footrest that moves up and down as my feet do.
This might not sound very exciting to you, but it was for me and all of colleagues. We were all hoping it would reduce my pain, and you know what – it has. Way more than I dared to hope it would.
I would say my hip pain levels have improved by 80% across the board, by which I mean not only while I’m actually at work. I’ve been in a lot less pain in the evenings and on my commute too!
My back pain is also much better during work hours, and I haven’t felt like I am going to spasm and spring out of the chair once yet. I know it’s only been four working days, but I am so happy and grateful to my employer for investing in me like this that I could cry.
Today is the first day in a long time I’ve had a decent chunk to time to work on that pesky little work-in-progress novel I’ve been chipping away at for about…five years (maybe). I should be doing that, but I’m procrastinating, so I’m working on this post instead.
I actually opened the file long enough to delete the final two thirds of it a couple of weeks back. I’ve wanted to do that for a long, long time. I was just putting it off because my first draft was complete, but then I realised there’s no point hanging onto a complete draft you don’t like it any more. That, and I like to think I could write it so much better if I start from scratch.
It’s such a big task that I’m actually a bit scared to start it, partly I guess because I don’t actually know where to start.
I’m fairly happy with the opening third (for now) so that’s staying as it is. I still know what I want it to end, I just want the rest of the the stuff in the middle to change.
If any of you have any motivation tips, or just want to keep nudging me to actually try and finish the thing so that I can maybe try and get it out into the world one day, I’d appreciate it.
It’s 1am and here I am, unable to sleep for what must be the third time this week.
I have no idea what’s keeping me awake tonight. One night, it was feelings of ‘What am I doing with my life?’ another time it was because I wanted to write. Last night pain decided to climb into bed with me and make getting comfortable impossible, but today…
It’s been one of those weird days today, where I haven’t felt unwell exactly, but I’ve not been myself either. I could tell things would be like that as soon as I woke up because I felt anxious to my tummy. All churn-y and whatnot.
I’d already planned to work from home, which was probably a blessing. I sort of feel like I’ve been in a daze all day; not down the grey pit of depression, but not fully engaged with life either.
I suppose I’m probably just over tired. I think I should try sleep now. I hope i can. I’m sure things will feel better in the morning…
It’s 4am and I’m lying awake thinking about how much I miss writing. I have so many ideas but no creative energy left at the end of the day to act on them, leaving me with an uncomfortable blockage that right now feels impossible to shift. The only reason the words are coming out now is because I know there’s no chance of me getting back to sleep until they do.
This whole needing to manage my energy levels thing is new to me. People often assume that my cerebral palsy makes me tire easily, and while that’s true when I’m physically active, it’s not the case with my mental or creative energy.
Before I started working full time, I never really considered that a desk job would be physically demanding for me. I do after all, spend the entire day sitting at my desk typing. I guess I never really noticed how hard forcing my body to sit in one chair in one position for hours would be because, when I’m at home, I sprawl out, move around, and spend (probably too much) time lying flat on the floor.
My employers are great and let me work from home when I need to but I like to be in the office as much as possible, although I do ask for home days when I need them. I don’t like it, but I’m learning to accept it.
I feel like I’m having to fight against a lot more muscle spasms these days, and not just at Work, but at home and when I’m home too. At least, I think that’s what they are. My whole body feels wound too tightly and I can only take it for so long before I need to ‘spring’ and sitting still becomes almost impossible and too uncomfortable to bear.
This is new to me. Does it happen to any of you? If it does please let me know.
Anyway, I’ve just noticed that it’s turned light outside so I’d better try squeeze in some more sleep.
If you’re still reading This, thank you for giving me a reason to write and a space to clear my head a bit.
Okay, okay. I admit it: I knew it had been a while since I updated you guys on how things were going, but it turns out that it’s been almost a month! I’ve had a fair bit going on so I thought I’d do one of my mini round-up posts to bring you up to speed.
I saw my consultant for my latest round of botox injections. I have these in my legs to try and ease the muscle tightness caused by my cerebral palsy. The appointment also gave me chance to talk to my consultant about my increasing hip pain. She agreed that we need to do something to try and level off my pelvis, so she sent me back to orthotics to get a raise put on one of my shoes. If that hasn’t made much difference by the next time I see her (in about four months, this time) she’s going to look at referring me back to orthopedics to see if they have any suggestions. I haven’t seen anyone from that department once I’d finished having all my hip surgery just before I went to university, so that would be interesting but scary at the same time.
After seeing my consultant I was sent an appointment to go back to orthotics which I always dread (orthoics I go waaay back). I saw an orthotist I’ve never met before. She seemed nice and measured me up for a new pair of calipers (similar to the ones pictured) to go along with the shoes when I told her I don’t have a spare set. The new shoes will have a raise on one side, and she’s given me a wedge to put inside my current shoe until the new ones arrive.
I noticed straight away that it made my hip feel much more comfortable when I’m standing or walking but it hasn’t helped when I’ve been sitting and laying down. Maybe it will in time, but I’m not sure.
My back pain has also been much worse in the last few days. I’ll just need to see if this is a standard phase in my ‘pain cycle‘ or if it will last longer than that as we try and change my posture.
This week I did something for the first time: I took annual leave from work. It was…weird.
I wasn’t originally planning on taking any leave this early into my six month contract; I didn’t feel like I’d really ‘earned’ any yet. However, the end of the financial year was approaching and I needed to use some up – so I booked a couple days off.
The act of requesting leave was an odd mixture of exciting and scary. I was expecting the former but not the latter. It was hard for me to reason with myself that having annual leave is an important part of working life. It isn’t all that surprising, considering that before this job came along, I had convinced myself that I would never, ever, get to call myself an employee.
I’ve adjusted my body clock to working hours; getting up on time and going to sleep early enough that I’ll still be able to function in the morning, but, to be honest, I’m still working on accepting that I’m worthy of a job. I had to fight the urge to check my work e-mails approximately every five minutes.
This weekend is Easter weekend. Here in the UK that means that we don’t work on Good Friday or Easter Monday. I feel completely different about this. The rest of my team are off work too. This feels okay. It feels like I’m ‘allowed’ (by my own standards) to relax this time. I was holding myself back before. I know that.
I also know I need to work on that. This is an important step in my working life. I hope there are more to come.
When I was unemployed I looked forward to, and dreaded weekends.
I looked forward to them because all of my family and friends were employed, so weekends meant I could spend time with them. Plus, for two days a week it felt like it didn’t matter that my body clock was a mess because lots of other people would be staying up late and sleeping in. I felt like everyone else. For most of it.
The hardest day of the week for me it the five and a half years I was jobless wasn’t, as you might think, a Monday morning. By the end of it I’d reached the point where I mostly slept Monday morning (well, most mornings actually) away so that I wouldn’t be as lonely.
Sundays, especially the afternoons and evenings, sucked way more.
Everyone would spend it complaining that they didn’t want to go to work the next day and I couldn’t wait until I could say that sort of thing too, even if I didn’t mean it. I hated knowing that another Monday was about to go by without a shiny new job for me to go to.
Now, after two months of working, I look forward to weekends because I feel like I’ve earned them. Sundays don’t suck any more, and I haven’t quite reached the point where I have that ‘Oh poop, it’s Monday tomorrow’ feeling. I’m sure that will come in time though.