It’s 1am and here I am, unable to sleep for what must be the third time this week.
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 spent 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.
The other day while I was in the shower it hit me: February marked four years since I started taking antidepressants, and as well as wondering where the time had gone, I realised I wasn’t sure how I feel about this. I’m still not.
Before I go any further with this post, I want to make it clear that right from the first couple of weeks of taking my meds I knew I’d done the right thing. It’s actually the best thing I’ve ever done. I have no regrets.
But I still remember how I felt in my doctors appointment that day. I’d been offered meds before in the past and refused them, but this time I knew I’d do anything they suggested. At the time, my anxiety was more of an issue than depression, and, as dramatic as I know this sounds, I was genuinely scared by how bad things had become.
I couldn’t relax, couldn’t sit still, and my germ anxiety was so bad I changed my clothes every time went into the bathroom, even it is was just to scrub my face. I washed my hands before, during and after using the toilet. I laugh about this last part now when I bring it up to show people how far I’ve come, but honestly, I don’t find it funny in the slightest. I find it terrifying.
Then the doctor told me that he’d like me to be on them ‘until I’m feeling a bit brighter, plus another six months’.
I felt like the bottom had just fallen out of my world. I wanted to take it back. I wanted to take it all back, even the CBT I’d agreed to try instead of counselling like I’d had several times before (I’ve actually had CBT since then too). I’d agreed to give over at least half a year of my life to taking these meds. That was way too long! I’d made a huge mistake! I couldn’t take it back because the prescription was already in my hand.
I got home and paced my room as I listened to Twenty One Pilots in my earphones as loudly as the volume would let. This, as trivial as it sounds, is actually quite significant and proves how angry I was with myself. When someone bought me my very first tape walkman as a kid, I hardly used it because I was so afraid it would make me go deaf, and on the rare occasions I did use it, I would spend at least 10 minutes after I’d taken the headphones off repeating everything my parents said back to them so they (and I ) could check I hadn’t gone deaf. I had to do this for quite a while to prove that my ears were’t playing tricks on me for the first few sentences…
I’m over this particular worry now, but it’s always in the back of my mind whenever I use my earphones.
Fast-forward to 2018 and I’m taking antidepressants way, way, way more for depression than anxiety and I feel strangely okay about it. I’ve had so many ‘dips’ in this time that I know I’m not ready come off them yet. They’ve not been a magical cure, I’ve had to switch tablets once and raise my doseage more than once, but most of the time they keep me level enough that I can drag myself out of bed, even on my ‘bad’ days, and can actually distinguish one thought from another rather than being sucked into a rabbit hole of thoughts and worries.
I feel like I’ve hit rock bottom at least three times in the last four years, but I’ve found my way back every time. When all is said and done, that’s what’s important.
Can you guys believe it’s been a month since I started my new job? I can’t.
That means I have successfully managed to get up (and start work on time) four Monday mornings in a row. This might not sound like a big achievement, but let’s not forget I’d been unemployed for five and a half years until I got this job. Getting up early on a Monday morning hasn’t been a feature in my life for a loooong time, but I’m adjusting. I think…