This is the hardest post I have ever written and the most honest. It is something I think I needed to write. It will help explain a few things if I casually refer to them later on but it is also a post I needed to write for me.
I have been disabled my pretty much entire life but for a long long time I never really identified as being disabled. It was just there and it was my normal. I was born with a condition that used to be known as “clicky hips” which is Hip Dysplasia but it wasn’t picked up until after I started walking when my mum saw me walking in front of her and thought I didn’t walk right. I spent months in hospital in traction having my tendons lengthened. Whilst most kids first word is “mum or dad” my first word was “hurt” which I said as mum was carrying me home from hospital on the train after my tendon lengthening. She was excited that I was talking than realised I was in pain. I later had surgery on both hips to correct the dysplasia (open reduction on left hip, closed reduction on right hip) and I spent months in a hip spica. A hip spica is a torso to ankle plaster. I used to crawl in my hip spica and there still might be marks on a doorway at my parents house where I rubbed away the paint and plaster as I was going into the kitchen. Clever me even learnt to stand up in my hip spica which freaked mum out. I also then spent time in a brace after my spica. Thankfully Hip Dysplasia is now picked up at birth for babies born with it and treated straight away to try to prevent further hip complications.
In my hip spica with my guardian by my side
My childhood years were just like every other kid except I knew couldn’t run as fast as the others or do things like cartwheels, touch my toes or ride a bike (I never got off my training wheels) as my balance wasn’t the best. I played netball for 9 years, goal keeper and shooter were my favourite positions where I didn’t have to run as much (to this day I still shoot things into bins) I had a hip scar that the other kids didn’t have and I limped a fair bit (more if I was tired) but it was my normal and I didn’t think any differently. Every few years I would go and have hip x-rays but that was it. I did dislocate my knee during netball training when I was 13 but I went back and played netball the following season so that didn’t stop me.
My hippo that I got at 16 ahead of my surgery which I named after my surgeon
When I was about 16 I was in a fair bit of pain and after some tests it was discovered my right hip was bone on bone rubbing it away it. I was faced with the option of surgery or being in a wheelchair by the age of 20, it was that bad. I didn’t want the surgery explained to me in full otherwise there was no way was my surgeon going to be able to get me on the operating table. At the time all I knew was my hip was going to be cut in 3 places, spun around and couple of pins put in it. I later discovered the official operation was a triple pelvic osteotomy, which is a hip reconstruction. The surgery took longer than expected as my surgeon just wasn’t happy with it. Months later the pins that were put in to hold in it in place shifted deeper inside my hip but as I was use to so much hip pain I didn’t really take much notice of it. After the osteotomy I was on regular crutches for a few months then went off them until the pins were removed. I was limping a lot but I was use to it. When it came time to remove the pins they couldn’t be located as the bone had grown over them and again the surgery took longer than expected as they had to find them. When the pins were removed I was on regular crutches again for a short time but I continued to limp badly without them and I was in pain. I think I spent about 2 weeks off them before it was decided I needed to keep using one so I started using a canadian crutch or forearm crutch and I have been on it ever since. If you need to use a singular crutch canadian crutches are much more comfortable and easier. Bonus is you can hang stuff off them whilst you’re standng waiting at places. There was a couple of nights when I was 18 that I went out without it but I was in so much pain it wasn’t worth it. My surgery at 16 changed my life forever. I elected to repeat a year 11 as I had spent so much time off school that year due to my surgery. I had to change my career path because childcare was no longer an option. I’m ok now with what happened but for many years I wasn’t. There was days where I hated using the crutch and I have kicked it and thrown it many times in anger. At 24 I was diagnosed with degenerative arthritis. It was something that I knew was always going to develop but it pissed me off for a long time as in my mind I wanted to make it to 25 before I got it and I didn’t.
Injury caused by hypermobile fingers stuffing a toy
Roll foreword to more recent years. I have grown to accept I have a disability and embrace it. I’m hypermobile. Most of my joints bend back further than they should, I get minor subluxations which means my joints move out of place at times and I have to move the joint around to try and get things back into place, sometimes I can do it straight away other times several hours. Not all joints are flexible (still can’t touch my toes) but hypermobility isn’t necessarily in every joint for every person. All my joints click and often I need to crack them to relieve the pain. I was cracking my knees one morning so much a work colleague thought she was hearing rain hitting the window outside, I did crack up laughing at that.
Last year I discovered a connective tissue disorder called Ehlers Danlos Syndrome (EDS) I was honestly in tears reading about it. Hypermobility falls under the syndrome. Suddenly all these unrelated symptoms or conditions I have all made sense. Aside from the hypermobility issues I have anxiety, depression, digestive issues, pain, fatigue, random bruises, insomnia, sleep apnoea, brain fog the list goes on. Many health professionals I have spoken to do believe I have it, some without me even mentioning it first. I’m in the process of trying to get an official diagnosis of it which I am desperate for. It is hard to put it into words why I am desperate for a diagnosis. Part of me wants an easy answer to tell someone if I choose to tell them why I am disabled. I say if because my disability isn’t something that I should have to explain to complete strangers in random situations unless I want to (believe me that happens a lot) I hate referring to it as a condition that I had when I was a baby when that is coming up to nearly 40 years ago. Part of me want confirmation of EDS so that I know I’m not making this stuff up in my head that I go through everyday.
A few years ago I started using #disabledandproud on some of my Instagram photos. Not to big-note myself and say look I’m special but to just to be comfortable and connect my with my disability which is a major part of my life. I’m not ashamed of walking with a crutch in fact I love it. I know if I didn’t use I wouldn’t make it out of the house each day. Mobility aids no matter what they are shouldn’t be something to be ashamed of. I don’t need to use it at home or around my general area at work (unless I’m having a bad pain day) The crutch I is something I use that allows me to get on with life.
In some ways I am not a confident person (anxiety and introvert part of me) but I’m not afraid to speak up when it comes to things like asking for a seat on public transport for myself or others. I do question or point out issues in terms of disability access when I see them. I don’t generally make a big deal about my disability as it just part of my everyday life but it is a very big part of my life that I have come to accept. Currently I still get a lot of pain, some days more than others but not the same level I had at 16. I am very stubborn person and want to do everything on my own but sometimes I do need help and often it is hard for me to admit that. In my mind it is like admitting defeat and I don’t like to lose. Like a lot people with disabilities I have twisted sense of humour. My favourite song lyrics ever “No one should take themselves so seriously” come from the blink-182 song What’s my age again? I can make fun of myself and call myself a cripple, so can my close friends or others I meet who are disabled but no one else can joke about it. As I mentioned earlier a lot complete strangers think it is ok to comment about my disability, joke about it or make assumptions about me. This is not something new I’ve been dealing with comments and jokes from strangers for over 20 years. The best one was when I got in a lift once on a railway station platform and an older lady said she should stand near lift exit first as it would be quicker for her to get out than me. Red rag to a bull!! That was it the race was on and instead of taking the 2nd lift to exit the concourse area I took the stairs and I stood there smiling as she got out of the 2nd lift. As I said I don’t like to lose. I’m now sick of the comments I get from strangers. I don’t understand why people think it is acceptable to joke or comment but they do. I don’t quiz people as to why they are ignorant morons but I am now thinking I should.
If you have made it this far thank you for reading my ramblings 🙂 In previous posts I have mentioned my disability before but I hope this has given you a more of an understanding about me, not that I have to explain myself to anyone but I’m choosing to discuss it on this blog. It took me years to say it but I am Disabled and Proud!!