I’ve been living on my own for four months now. Can you believe it? Four. Months.
In that time I’ve been very restrained and only been to IKEA twice, fallen and cut my head open once (I’m fine by the way), and used a dishwasher for the first time in my life.
You’d think after 30 years of living with cerebral palsy I’d have learned to manage my energy levels in a way that keeps my pain levels to a minimum, but I have most definitely haven’t. I’ve had a couple of pretty big pain flares in the last few months. I guess this was kind of inevitable.
I’m doing more for myself than I’ve done before so of course I was going to have to learn what my body’s daily limits are. I guess the only way to learn that is to overdo it. The problem is that I, and so many of my other wobbly friends, learn these limits but don’t always stick to them.
For me a least, that I like to do everything in one day in case a pain flare starts tomorrow and things get on top of me. Rationally, I know this isn’t the best approach.
In the meantime, I’m starting to compile a list of tips and tricks that make managing pain and energy levels easier, which I might share here at some point. I’m due to go and have an ultrasound in a couple of weeks to see if I’ll benefit from having another steroid in my hip, and I’m on the waiting list to have a telephone consultation with my consultant to talk about pain management.
I did it! I finally moved out of my mum’s house. Not only did I move out, but I’ve moved away. I’ve gone from West Yorkshire to South Yorkshire.
I’ve wanted to move out ever since I had to move back home at the end of university. Moving back in was never part of The Plan, let alone being there for another nine years.
I always assumed I’d move away for work. I haven’t. I’ve moved away for *me*. And that makes it somehow more exciting.
The most obvious, and perhaps ‘easy’ thing for me to do would have been to move to Leeds; it’s where I work and is on a direct train line back to my Mum’s. But let’s face it, I’m not known for doing things the easy way, so I moved to Sheffield. Obviously.
I still work in Leeds (well, my office is based in Leeds, but I’ve been working from home for the last year and a bit) It’s roughly the same commuting time to get to work from Sheff as it was for me when I still lived in Keighley. I’m right in the city centre so everything is close by. I have friends here and I know the city a bit from when I had all my hip and leg surgery as a teenager. Plus, being here kind of reminds me of my dad in a roundabout way so it seemed like a fairly logical step.
Honestly, I’m just really excited to live somewhere that actually has Deliveroo. And a convinece store I can get to that A) has step-free access, and B) isn’t up a giant hill.
Did I mention I can use Deliveroo now?
This isn’t the first time I’ve lived away from home, but it is the first time I’ve lived alone, which brings with it a particular set of challenges on the cerebral palsy front. I knew pretty early on that I wanted to live somewhere that had a 24hr concierge desk that that there was always someone I could ask for help if I got really stuck. I’ve programmed the number for the reception desk into my Alexa so that I can get her to phone them if I (God forbid) have a fall and need them to call an ambulance or something.
I’ve hired a cleaner, and I made sure to choose an agency that offered support with things like changing the bed and putting the laundry away for me too. They would take my laundry away and bring it back for me the following week if I wanted, but I’m going that bit for myself for now. It’s nice to know I have the option to add that to my package if I want to, though.
Most of my crookery is plastic or bamboo because I know I wouldn’t be able to clean up a smashed glass or plate n way own.
Doing more things for myself is taking up more energy and I haven’t quite got the hang on managing that yet. I’m sleeping lots and I tire more easily than I did in my uni days, but hopefully, I’ll adjust soon. Or get better at managing my spoons at least.
It’s been a month so far and I’ doing better than I expected. Let’s hope it continues.
It’s okay, you can be honest: it’s a poorly-taken picture of an empty moisturiser tub.
Well, that’s probably what it looks like to you, but to me it symbolises so much more.
It symbolises strength, healing, growth, courage, self-worth, kindness and hope, to name but a few things.
Let me explain.
I’ve had a..fairly rocky…shall we say, relationship with my body since my teens. My posture at that time my was such that my left kneecap had actually rotated inwards. I thought this was disgusting and I was ashamed that I’d let my standing position get so bad in the first place. Even after I had corrective surgery I would always make sure to keep them covered up.
I’m starting to accept my legs now, but I can still hardly stand to look at, or touch my own feet, which curl around strangely thanks to my CP. My left arm, which is also impacted by my cerebral palsy has a habit of looking like itit’s photoshopped in to pictures
As a teenager with no disabled friends and no disabled role models in my real life or in mainstream media, I somehow can to think of my body as being worth ‘less than.’ It was, to me, gross, and trying to do anything to it that would make me think it looked a bit nicer made me feel pathetic because I was doing it ‘wrong’.
I’d go through phases of wearing make up every day and trying to remember to moisturise twice a day, only for that no-so-little voice in my head to creep back in and tell that my face looked just as bad regardless of whether it was done up or not.
Moisturising was different. I hated touching my stomach, my arms, my legs. By this point I was also having issues with body image in relation to its shape and weight, which I’m not ready to talk about yet. Trying to stop my skin from drying out felt pointless when I covered up as much of it as possible all of the time.
Trying to look after it felt like I was trying to be kinder to myself than I deserved to be. Ultimately, that made me feel worse and worse until I stopped trying all together.
Giving in made me feel sad, but that was preferable to feeling guilty every time I tried.
So what’s changed, you may ask.
When it became clear that my dad was really very unwell at the beginning of this year, I made contact with a therapist. If you’ve been following this blog for a while you may already know that I have a history of anxiety and depression, and I didn’t want to let those issues have chance to spiral in what was going to be a triggering time.
I never really thought that I would decide to face my body image and self-worth issues head on through our work. I was still trying pretty hard to pretend that they didn’t exist.
But we’re working on it and I’m trying and here is a photo of an empty tub of moisturiser that is proof of that.
The picture is actually a few weeks old now. I wanted to post it at the time, but the truth is that I still feel quite pathetic when I talk about this stuff.
Today is the fourth bad cerebral palsy day I’ve had in a row. I am sore, I am grumpy and I am tired. And, I’ll admit it, I’d kinda forgotten just how draining it is to have increased pain levels over ‘prolonged’ period of time.
And.
It.
Sucks.
I’ve had far more than four bad CP days in a row before, so this technically isn’t anything new. I should be a pro at dealing with this now. I’m 29 and I’ve had my impairment all my life after all. I’ve learned many, many life-hacks to make day to day living easier over the years, and I’ve learned ways of managing my pain to keep it a low-level as possible. But I’ve learned something else too: sometimes my pain is going to spiral and there’s nothing I can do about it. I just have to ride the wave and get through it as best I can.
A few years ago it felt all my posts on this blog were about stints of intense days that I couldn’t seem to get a grip on. They were so mentally and physically draining that I spent most of them crashed out on the sofa watching endless episodes of Gossip Girl because that seemed to be the only thing I could concentrate on.
I woke up expecting every day to be the same, if not worse, than the last one and I went to bed expecting the act of trying to get to sleep to be a nightmare in itself. At the risk of sounding like I’m in a work meeting (sorry to any of my colleagues reading this) I found a sort of battle rhythm and got through it as best I could.
The thing is, when you’re not in the cycle, that rhythm, that never-ending fog of only ever being half-present because all you can think is ‘this hurts, this hurts, this hurts’, you forget what it’s like. You forget what all your distraction techniques are to take your mind off it, your forget what that one sitting position that gave you five minutes of comfort was, and you sometimes even forget how low it can make you feel.
Every time you (or at least I) swear that you won’t forget this time. How could you possibly forget feeling like this, anyway? How can you possibly remember anything else from that time period other than wanting it to end? But you (or at least I) do. I forget every time, and I always forget just how quickly I forget too. Within a matter of days the relief that it seems to all be over for now wears off and you put the memories to the back of your mind and deal with all the things that the pain put on hold.
You forget because you have to, because you’re desperate too, and because it’s just so amazing to finally be able to thing about something – anything – else again.
Then, when the next wave comes I (and maybe you, too) feel a little bit guilty that I let myself forget so easily. I forget the crappy bits and just choose to remember that I enjoyed watching 42,000 hours of Gossip Girl far more than I would care to admit. And yes, sometimes I even think about how grateful I am that the show exists to keep me company on days like that. I’m genuinely not sure how I would have got through that rough patch a few years ago without it.
And so today, on bad cerebral palsy day number four, I had a hot shower, put on my uncomfortable-but-useful orthopaedic shorts, and watched Gossip Girl, Because even through all the pain, sleep deprivation and the massive mental health crash that came with it, I’ve somehow managed to remember that Gossip Girl is what got me through.
Do you remember that bit in my previous blog post where I said that my hip and pelvis pain had been so much better since I’d been staying at home all the time?
Well, I think I jinxed it, because guess who started having a pain flare the day after I wrote it?
Yup, that’d be me.
My pelvis pain is back and making itself felt and I am most displeased.
It’s not the worst flare I’ve had in fairness but it’s caught me on the back foot, that’s for sure. I’ve spent the last couple of days trying to figure out if I’ve done anything differently that may have triggered it; something I could just stop doing and have it settle back down again. Unfortunately, the only thing that’s been different is the weather, which has gone from being wonderfully warm to flippin’ freezing.
My cerebral palsy and the pain it causes is so much easier for me to manage in the summer. Heat is one of the key ways, if not the key way that I manage my impairment on a day-to-to basis and to have the sun disappear so quickly makes my body very cranky indeed.
So, reluctantly, I have dragged my orthopaedic shorts back out of my wardrobe which will likely help if I wear them for a couple of hours every day while it’s cold. They’re custom made for me and are measured to the millimetre. They’re designed to be skin-tight and hold my hips and pelvis in the right place.
I like them and they do help, but getting them on is a total nightmare. Have you seen that bit of stand up Michael McIntyre does about watching someone put tights on? It’s like that only it takes about three times longer and doesn’t even have the slightly sexy bit at the beginning.
All in all, I shouldn’t complain, but it’s made me realise just little I’ve had to focus on managing my pain levels the last couple of weeks. Of course, it was wonderful while it lasted, but it’s hard not to feel a little bit sad when the pain becomes front and centre again.
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