Hi. So, I’m hypermobile. If you want to find out more about my condition, click here. My symptoms mainly involve chronic pain & frequent joint dislocations, but I also have other fun side effects like bruising really easily and always being tired.
I wanted to write this blog for a few reasons. Firstly, I’m a liar. Seriously, I pretend I’m okay SO MUCH. It’s easier to pretend that I’m not in agony, or that my knee is fine, or that I’m not completely exhausted. It means that the people I love worry about me less, it means that I pass as ‘normal’, it means I get less questions. I’ve done this so long it’s second nature for me. This first point leads neatly onto my second one.
If someone asks me if I’m okay, my default answer is “yeah, I’m fine.” So when for instance, I had a dislocation on the train home from a book convention (shout out YALC!), I got a tonne of messages from friends and family, asking if I was okay, commiserating me on the knee, and saying lovely things like ‘but you’ve been doing SO well lately’.
Because, of course, for them, I had. They see the photos of walks, or the times I go swimming. They see me smiling and laughing. They know that I don’t miss a day of work. A lot of the time I put on this massive act of “I’M ABSOLUTELY FINE”, when really I’m not.
And that leads me to this blog post. A week in the life of me. I jotted down what I was feeling and when in my notes section on my phone, and here it is, in its unedited glory:
- We went on a walk to the beach. I felt like my legs were burning, but I didn’t stop until I’d made it all the way down to the pebbles. Every step felt precarious–like I was walking on a floor that was about to fall out beneath me.
- The view is beautiful–moody and foreboding, and I try to concentrate on reading my book, but the thought of the walk back makes me cringe. I wish I’d brought my stick.
- I make the walk back without stopping, because I’m afraid if I stop I won’t be able to start again.
- I’m so exhausted by the walking that I go to bed at 9:30.
- *This was a really good day for me. A good day is pain that I can push through, that I can manage.
- We go to a honey farm. I rush through the exhibits, because I need to take a seat. I go and sit in the car whilst my parents finish looking. My knee is really really painful.
- I rally, we go for a walk on the beach–a quick walk–and take photos.
- I’m so exhausted I go to bed at 9:30 again.
- We go on another beautiful country walk that nearly kills me. But I say I’m fine, as usual. My head is pounding–I’m trying so hard not to concentrate on my joint pain.
- We go home, kind of early, and I spend the rest of the evening on the sofa.
- We head to the beautiful town of Ilfracombe, one of my favourite places. We stroll through the streets, and for the first time this week, I’m not in that much pain. It’s sunny, we take in the sites and eat ice-cream.
- On the way back to our house, I sleep. I am utterly exhausted, and not feeling right. Everything aches. I feel like I’m swallowing a knife. I know that I’ve pushed myself this week (I mean, I’m on holiday, and I want to spend as much time exploring as possible.) Normally, if I’m doing something that requires a substantial amount of activity (i.e. work, a research day in London, seeing my friends), I have a day of icing/resting my knee. This week, I haven’t done that. Now, I seem to be paying for it.
- In bed at 7pm, everything hurts.
- Today is a bust. I spend it on the sofa, sleeping and reading.
- Today is our last day in our little holiday home. I still feel rough.
- I sleep in the car on the way to Minehead, on the way to my actual worst nightmare (other than a major dislocation); camping.
- The idea of spending a night in a cold tent, on an uncomfortable camp bed is not my thing anyway, but add in my hypermobility, and its positivity terrifying.
- I spend the night twisting and turning, getting next to no sleep.
- We’re on our way home, I’m excited, but my joints feel like dead weights. I gnaw on my lip to stave off the pain, and sleep for most of the way home.
- When we arrive, my brother asks me if my knee was okay. I answer: “It was okay at the beginning of week, not to good at the moment.”
Still smoothing out the truth.
Sidenote: every person with hypermobility is different, so this week is most definitely not reflective of anyone else’s experiences. My hypermobility fluctuates–sometimes I have next to no pain and can walk for miles, some weeks I can’t even get down the stairs, and sometimes I’m at an in-between stage.
I’m not sure what (if anything) I’m trying to achieve with this blog post. I actually think keeping a day to day note of things has enlightened me on how much I lie to myself about my condition–I genuinely thought I’d had a pretty good week, but looking back, did I?
I guess what I’m trying to say is I absolutely HATE worrying people, especially my family & friends, so saying ‘I’m okay’, is almost like a defence mechanism so that the people I love don’t get hurt. But a lot of the time I’m not okay. And being not okay sometimes IS okay.