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.
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.
It recently occurred to me that a lot of new people have started reading View from a Walking Frame since Employable Me aired. I realised that not all of those people will know a lot about me or this blog, so I thought today it might be nice to re-introduce myself and explain a few of the things I natter on about on here.
So, here is a bit of a potted history of my life.
I’m pretty sure most of you will have worked this out already, but if you haven’t then I’m Nicola Golding (although I go by Nic) and I have cerebral palsy. I write a lot, read just as much and drink way, way, way too much tea.
I also have anxiety and depression that flares up a various points in my life, which I talk about a lot on here (and my YouTube channel too).
I have a boyfriend of nine years, two cats, a dog, and a degree in multimedia journalism.
That’s about as interesting as I get to be honest, but if you want to know more about me that isn’t related to my disability or mental health, then you can always look through my old Fun Fact Friday posts.
About my cerebral palsy
There are about 17 million people in the world who have cerebral palsy, and while I’m definitely not a CP (or disability) expert, I am perhaps the only expert in how cerebral palsy truly effects me.
To cut a very long story short, I was born 14 weeks premature and had a bleed in my brain, and that is how I got CP, or spastic diaplegic cerebral palsy to be specific. There are four main types of cerebral palsy, but mine is the spastic kind, which means I have muscle tightness. Diaplegic means I have it in two limbs (both of my legs). Although, my left arm is also impacted a bit, so some professionals call me triplegic (three limbs).
There is no cure for it, but I can learn to manage my pain and the various other challenges my disability throws at me.
The main problem I have is pain. There is not a single day where I am ever completely pain free. Some days are worse than others. Now I’m getting older (I’m 27) I’m noticing that the bad days are getting more and more frequent, and some months they outnumber the good.
I’ll admit that I’d totally forgotten my consultant said she was going to refer me back to my usual physio department so they to give me a refresher course on all of the stretches I’m supposed to be doing.
We’d arranged it a while back when my pelvis pain was really bad. I’d been seen by a different department in the meantime (that my GP had referred me to) so I’d kind of assumed that would be that. I didn’t think they’d allow me to have this second lot of appointments once I mentioned this, so I was really grateful when they said I still still go in.
I was even happier when I found out that my new physio is also the same lady who gives me acupuncture. My previous physio retired earlier this year and I was a bit nervous about seeing somebody new when the previous lady knew me and my regular problems so well.
thankfully, my acupuncturist does too, so, even though she’s never actually given me physio I feel like we could hit the ground running.
It didn’t take her long to work out that my pelvis isn’t very well- aligned at the moment (one side is lower than the other) ,, and she told me that we were going to have to work on making the muscles around it stronger before we could work on the alignment issue.
One thing that I really liked what that she taught me the names of exercises I’ve been doing for years but never knew the names of. Well, it’s more likely that I’ve forgotten them, but I’m still pleased she took them time to tell me again.
It was one of those appointments where I came out feeling more sore than when I went into it, but I often find that these ones make me feel much better much faster.
I’m feeling really positive that we’ll do a lot of good work in these sessions.
I know, I know; blue isn’t a colour traditionally associated with Autumn. I know that for most people it’s all about orange, red and brown crunchy leaves, fully PJs and adding pumpkin spice to absolutely everything, but not to me.
I dislike Autumn and I absolutely hate winter. I dread this time of year in pretty much the same way that I dread dentist appointments. I fret about it for weeks in advance, and always go into it expecting the worst. Unlike most of my trips to the dentist though, Autumn/Winter aren’t over in five minutes.
Thanks to my cerebral palsy, this time of year sucks. My aches and pains increase 10-fold (sometimes literally), my poor circulation makes my feet so cold they hurt, and it gets harder and harder for me to leave the house on my own thanks to the slippery fallen leaves/wind/ice/snow that a lot of the people I know IRL seem to love so much.
I’m always the coldest person in a room, which isn’t helped by having to use my wheelchair more and more. Believe me, you get colder than you might think when you’re just sitting there being whipped by the falling leaves/wind/ice/snow that everyone else seems to love so much.
I’m already starting to feel it and the fn’s only just begun for this year, and I’m already not sure I have the mental and physical energy to deal with it.
I wish I could join in with the excitement, but I can’t.