I had some recent feedback on Sea Invisible that I was so humbled and honoured to received.
Your words do an excellent job at shedding light on the often-overlooked issue of invisible disabilities and how society's perceptions can try to shape peoples [sic] identity. Your courage in addressing this topic head-on is really inspiring so thank you so much for sharing.
Raising awareness of disability and helping people talk about it without fear or judgement was why I started the newsletter in the first place and I am so pleased to be achieving that goal. Thank you so much for reading and continuing to follow my journey and, if you have any thoughts you would like to share, I’d love to hear them.
For today’s post, I was reflecting on the recent news that singer, CMAT fractured her neck while performing on stage. This got me thinking about some of the weird injuries I’ve had. CMAT didn’t even notice her injury until her larynx collapsed and she lost her voice and this is something I can identify with too.
Weird injuries can cause a few raised eyebrows in A&E, but they’re a reminder of how much being hypermobile can affect your life - I rarely go longer than a fortnight without dislocating something…
So here are my top five weirdest injuries that landed me in hospital:
Number 5: Dislocating my shoulder opening a cupboard door
My partner and I bought a house in mid-2020 which has kitchen units which might be cheerfully described as “vintage”. As you know I quite like the antique look, and there’s quite a bit of work to do in the house, so we haven’t been in any particular rush to replace the kitchen unit with new ones.
But when things are older, they are more likely to break, and one of our cupboard doors became loose. My partner fixed this, but the hinge had been permanently weakened, and the next morning when I opened the door, it fell off in my hand, hanging on by the lower hinge.
I tried (stupidly) to take the door off properly so it wasn’t a hazard, and when the lower hinge was loose enough, the door fell to the floor, taking my hand with it and dislocating my shoulder.
It was the fifth time I’d dislocated my shoulder, and I relocated it myself. Unfortunately, as I had dislocated it a few times the nerves around the joint had become stretched and I lost all feeling in my right hand so had to go to the hospital as I thought I hadn’t put it back in properly.
Luckily I had and the nerves would recover with rest, but that did mean I needed to spend a couple of weeks with my arm wrapped up safe and secure in a sling, so needed to attend a family birthday party with it on and spend the next couple of weeks at work using dictation as I couldn’t type.
Number 4: Dislocating my jaw yawning
My jaw was the first dislocation I remember happening, around aged fifteen, though obviously I’d dislocated my hip a few times before that, and just didn’t know about it!
Dislocation of the jaw while yawning isn’t uncommon, and obviously hypermobility puts you at higher risk of it happening, but it was a bit of a rollercoaster getting it fixed.
For the six months or so following my first dislocation, my jaw was never relocated properly and my GP, dentist and the local hospital spent that time arguing about whose responsibility it was. Every doctor I saw would send me to a dentist who wanted nothing to do with my clicky mandible and sent me straight back to a doctor.
Eventually I was diagnosed with temporomandibular disorder (which I don’t have!) and three GPs managed to relocate my jaw between them - which hurt, a lot.
My jaw regularly dislocated until I turned thirty when it started to ease off a bit (touch wood!) and was my most regular dislocation for a long time. If anyone’s keeping score, it’s now a close run contest between by right thumb and index finger, which often pop out at the same time.
Number 3: Dislocating my thumb putting my ankle back in
This was a horrible irony.
Most people with hypermobility disorders/syndromes that I know are able to relocate their own joints, even though all the doctors I’ve seen said we should not be doing that and should always go to the hospital, but when it happens so regularly, who has the time?
With the exception of my hip, which is really bad, I can relocate all my own joints now, including my jaw!
So recently I dislocated my ankle (just walking around and pop) and it was a little tricky to relocate, possibly something to do with the hot weather at the time which always seems to aggravate my symptoms.
Putting it back in, my thumb came out adding insult to injury, hurting a hell of a lot and turning my right hand a lovely shade of purpley-blue for the next couple of weeks.
Number 2: Dislocating my hip walking home
This was one of the scariest dislocations I’ve ever had.
Describing it shortly after it happened I would tell doctors that I didn’t know how serious it was because it didn’t hurt, at all, and I believed that until a physiotherapist told me deadpan that it probably had all the pain in the world but I’d have repressed it.
I was walking home from the train station when I felt a small pull in my leg and promptly fell down and couldn’t get up again. I was 300 metres from my house and it took me thirty minutes to walk home.
People have said two things to me about this. Firstly, that I should have phoned a taxi and secondly, that I should have phoned an ambulance. But how humiliating would it actually be to phone a taxi to go 300 metres and, as we’re all told, unless it’s life or death, you do not call an ambulance.
So instead I limped around for three weeks or so before I figured something was actually very wrong and went to the doctors to get told off about not going to A&E.
But if you’ve been to A&E countless times only to be told you’re imagining your symptoms, you soon stop bothering busy doctors dealing with real emergencies, especially when your symptoms seem like business as usual.
Number 1: Dislocating my shoulder in my sleep
And this was probably the scariest dislocation I’ve had, because I woke up thinking I was having a heart attack until I realised it was the wrong arm.
The first dislocation of my right shoulder happened in my sleep so I don’t know exactly how I moved to pop it out, I just woke up with shooting pain in my right arm, no movement in my right hand and a wrenching pain in my neck.
My partner was away when this happened, and I was lucky that a good friend lived close by who could drive me to A&E. I was also very lucky to not have to wait very long to have my shoulder relocated, but my story of it happening in my sleep wasn’t very believable apparently so I spent a long time at the hospital answering lots of questions; which is a great thing as of course these questions are the things that can help someone who is in big trouble and frightened so bend the truth to cover up their situation.
Bonus random injury: Dislocating my ear bones
I’m going to be doing a series soon on the symptoms of my conditions that people don’t talk about, and dislocation of ear bones in hypermobility is definitely one of these.
Many doctors accept that hearing (and sight) loss are common features of Ehlers Danlos and hypermobility syndromes and disorders, but many also say that they’re not a thing. When I experienced tonal hearing loss in my early twenties, for many years I believed it was due to my previously working as an audio typist and recurrent ear infections associated with wearing headphones all day at work.
It wasn’t until a couple of years ago I was told that my middle ear bones had become misaligned and that was what had caused the loss.
It’s really interesting that the dislocation caused by my invisible illness that has the biggest impact on my day to day life is itself invisible.
Take care,
Donna
Self-care snippet
I’m currently in the middle of Wildwoman’s Six Weeks Self Care of Summer, so have made a commitment to myself to look after myself over the summer months - whether or not the weather agrees that it’s summertime.
This includes reading and creating more, doing small things each day to look after myself, and eating good seasonal food. When the six weeks are over I’ll prepare for autumn by welcoming the cooler weather and having some quiet reflection time before seeing the culmination of some of my creative work when The House Amongst the Willows is performed at Formby Little Theatre towards the end of October.
Things I’ve seen, heard, read and talked about
Dibubuísmos – Edinburgh Fringe Online On the theme of self care, I recently reviewed Dibubuísmos for North West End UK and it is a beautiful and meditative piece. It’s a great reminder to appreciate the details in life, and that you can always go back to basics and start over whenever you need to. I highly recommend watching it if you have time before the Festival ends tomorrow.
Ami Kal: As a deaf person, here are the situations I find challenging (BSL) A great, informative list about one person’s experiences of being deaf and the challenging situations that arise for them. I love articles like this which really help you see the world from someone else’s point of view and consider what life is like for them.
How my disability fuels my imposter syndrome This piece really spoke to me and I don’t think I didn’t identify with a single point in it. Of course, I’ve written before about my own experiences with imposter syndrome and it’s very reassuring to see someone else tackling this.
Reflections on Disability and Acceptance An incredibly personal piece about seeing disability as a part of who you are and embracing your own personal journey.
Save Ticket Offices. I recently put a tongue in cheek post on Instagram about keeping ticket offices open after the staff member at my local station complimented my dress, but there are so many reasons to keep them open and accessibility is a very important one. Please read this article which outlines why ticket offices are so important to disabled people. There is also a link to contribute to the consultation and the deadline is 1 September. I’d be very grateful if you would complete this and share it with your friends and family to obtain their thoughts as well.