Hello everyone, and Happy New Year. I actually meant to write this post way before now, but those of you who’ve been reading this blog for a few years will know that New Year is a massive anxiety trigger for me, what the all the pressure to become a better person, achieve more, eat less chocolate, blah, blah, blah; so I decided to lie low on social media until all the fuss had died down.
Things have been pretty busy in Nicland over the last couple of weeks. My family and I made it through the festive season without any arguments, I finished in one role at work and started another, I officially got another year older (happy birthday to me) and I have a new wheelchair on order.
I’m not sure how long it will take for my new chair to actually arrive, but I’m already thinking of new names, and wheelchair services has give me new wheels and brakes on my current one to tide me over.
2018 was a busy one too, and in amongst it all I said goodbye to my walking frame Ivy and am now the proud owner of an identical one called Netta. It took me a long time to settle on a name for this one, but people at work helped me choose and now I’m pretty pleased with it. She moves so smoothly compared to Ivy, whose wheels were starting to hang by a thread, that I feel as though I have to practically jog to keep up with her.
In other news, I’ve also renewed the domain name and re-mapping on this blog too, so it looks as though I’m sticking around for a while longer yet!
Yet again I’ve found myself getting on my Twitter soapbox about why attitudes towards disability and sex need to change.
You’re probably all bored of me talking about this by now, but if you’re not, you can head on over to my profile to see the whole thread of tweets I made. Here’s the first one for you:
Things BF & I've been asked/heard because of my #disability: – Bet you have fun with 'that' (meaning me) on a night, don't you lad? – His relatives debating if I'm capable of sex – Was asked at my #SmearTest if I was sexually active, cos I 'didn't need one' if not #Threadhttps://t.co/ykfG02oZw0
Believe it or not, I’m actually sick of talking about this too. I’ve mentioned it on this blog and I’ve even blogged about it for the charity Scope too. Yes, my mother read it and no, I’m not embarrassed. My dad chose not to read it, but if he had, I still wouldn’t have been embarrassed because why should I be?
Rob and I were together for 10 years and it took me a long time to stop feeling like I was doing something ‘bad’ by having a physical relationship with him .
(Yes, things are rocky right now, but we’re working on them and we’re in a good place. That’s an update for another time. Maybe.)
I spent far too much of my teenage years feeling ashamed, afraid and embarrassed. In fact, I used to wish that I wasn’t attracted to anyone, either sexually or romantically, because of society’s attitudes towards sex and disability. I felt like it was somehow wrong of me because I was always made to sex and relationships weren’t supposed to be for
But I’ll keep talking about it until we manage to end the stigma, because we will. One day.
Well everyone, after almost a year of full-time employment in digital communications I’m back on the job hunt again. My contract with my current employer has always been fixed-term.
My initial contract was only supposed to be for six months at first, but, by the time it ends on the last day of December, I’ll have been there (as a paid member of staff) for just two weeks shy of a whole year. I’ve actually been there a little long than that though, because I started as a volunteer before that.
I’m trying my best to to freak out too much. This time last year I was in my fifth year of unemployment after graduation, the BBC documentary that I took part in (Employable Me) hadn’t aired yet, and I was in a very strange kind of limbo between knowing that it wouldn’t be far away. My depression was so bad that I found it difficult to bring myself to get dressed every day.
Things have changed so much and I’ve mentally come a long, long way. I like to think I’m good at what I do (mostly social media-based things), and it turns out that I’ve become pretty confident at writing analytics reports, which is something I never thought I’d say. The sight of numbers usually makes my brain cry, so I’m actually, if I can be very un-British for a minute, pretty proud of myself.
There. I said it.
So yes, I’m back on the job hunt. I’m hoping it will be a bit easier this time around, now that I’ll have a year’s worth of experience under my belt.
This morning I woke up to a comment on one of my YouTube videos informing me that Employable Me is currently showing on TV in the Netherlands! Then, when I got home from work, I saw that people had e-mail this blog’s e-mail address to send their good wishes too.
If you’re here from the Netherland, Hallo and dank je for taking the time to reach out to me. (I don’t speak dutch, so I’m going to trust that Google Translate is accurate. Sorry if I actually just offended you!)
It’s all a bit surreal. I always knew there was a possibility that something like this could happen, I just really didn’t think it would. Or I didn’t think anyone would be interested enough to track me down online to tell me, although I’m very glad you did.
This is what Employable Me is all about; spreading the message as far as possible that disabled people can, and do, have jobs. It doesn’t matter where in the world you are, with the right support, it will be possible.
Thank you for taking the time to watch the show and allowing me to share my journey with you.
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 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.