Late Tuesday afternoon whilst curled up on the sofa nattering away to my partner my jaw dislocated. It wasn’t a surprise. It had felt off all day, with pain radiating around the area, and visibly subluxing often so I had stuck to soft foods all day. Being me though I hadn’t considered that talking a bit less might help. I rather excel at talking. It’s quite unusual for me to not to be able to relocate my own jaw but I decided that I’d try and sleep on it and if it was still bad in the morning I’d get checked over. I can almost hear you shaking your head at me, in hindsight I agree that was a silly decision.
So yesterday morning I took myself off to the Walk-In centre where after a quick (and right) lecture on dislocated jaws being an emergency I was whisked off to my local hospital. It was my first time visiting the A&E up here since I’ve moved and I was a tad nervous. But the staff were wonderful. They were rushed off their feet, but they were so kind, it was a breath of fresh air in comparison to what I am used to.
X-rays confirmed that the right side of my jaw was fully dislocated. After using a rather unbelievable amount of tongue depressors failed to relocate it, it was decided to take me round to the resus unit where I could be sedated and they could try and manually relocate it for me. They were so full of confidence, to the point I too was full of confidence, I happily offered them my arm whilst they pushed the sedative through, I can remember giggling as it kicked in…and then I can just remember the pressure as they tried to manipulate it. Two different doctors tried three times. I screamed. My jaw failed to relocate. They were lovely though. At this point the decision was made to phone for an ambulance to take me to a different hospital to see the specialists there.
Sedated post failed relocation attempt
When the consultant walked through the door I could have broken down; and to be fair I did about five minutes later. I’d seen him previously about 7 years ago and the visit burns in the back of my mind as a prime example as exactly what a doctor shouldn’t be. Upon entering the room this Dr recognised me instantly. He doesn’t believe in Dystonia. He ignored the fact I have EDS and suffer with frequent jaw dislocations. Whilst I am thankful he relocated my jaw, I cannot express how belittled, put down and worthless he made me feel. Upon leaving the hospital he advised that I start on a liquid diet but gave no further advice on time frame or inteventions in the meantime.
Out of frustration with feeling like I just didn’t know what to do to help myself this morning I went to see my GP, I am lucky to have a wonderful one up here. He was quiet astonished that I had been discharged from the hospital last night as you can see my jaw subluxing still and with my history its only a matter of hours/days until it fully dislocates again. So I’ve been referred to the oral surgeon and on strict orders to maintain a liquid diet until then. Dystonia and EDS are two conditions that really work against each other so here’s hoping there’s a not too drastic treatment plan in the future.
Today the NHS celebrates its 70th birthday, and with this milestone it is important to acknowledge what a valuable asset it is. With a government that seems to care very little about it, it is more vital than ever before that we shout from the rooftops about the wonders it performs day and night 365 days a year, and make our opinions known when it comes to ensuring that the NHS receives the funds it needs to continue you the amazing work it currently performs.
I am lucky to have experienced both sides of our NHS, as a student midwife I witnessed the strain in staff numbers and how overworked they are; as a patient I honestly doubt whether I would still be alive without them. I’ve had more ambulance trips than I care to count, and spent many months over the years being cared for as an inpatient. Without my neurologist I know that I would have little quality of life; I would not be able to eat, drink, talk, see, or move my limbs. He enables me to live a life that is fulfilling.
To the NHS I say thank you. Without you many lives would be extinguished, and many more would be experiencing incredible suffering. Thank-you for doing your all every day and night all year long. Thank-you for continuing to provide outstanding care despite your own government failing to supply you adequately. Thank-you.
At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.
Happy in our new home
Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.
I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.
I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.
Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.
So here we go again. Distraction techniques in full swing and disney soundtrack blasting.
Happy Birthday Dystonia and Me!
Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources I have come to know and trust.
When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.
Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.
Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.
Here’s to another 5 years.
I’ve been toying with the idea of writing this post for a few weeks. It’s a tad on the personal side, but as I find blogging so therapeutic I figured it may help to write it all down. As you know almost four months ago I gave birth to my handsome smiley boy. It’s been a whirlwind few months since and I love being a mum. However I’ve been experiencing complications ever since and after my last doctor’s appointment I feel a bit shaken up.
With the exception of 5 days (spaced out) I haven’t stopped bleeding since I gave birth. At first I put this down to the fact I obtained a second degree tear during my labour that took a long time to heal. I frequently wonder if its related to my EDS but Mr Google hasn’t shed much light on that. I’ve tried hormone medication designed to prevent the bleeding but other than causing further hellish stomach pains it didn’t make a difference. I’ve now been prescribed a new medication to make me clot more whilst I wait for an urgent appointment with the gyny team.
It’s been decided that I need a procedure to look around and see if there is any obvious issue that hasn’t already been picked up on my scans that have been carried out over the last couple of weeks. My Dr’s advice has been that if the scan doesn’t show anything obvious that can be treated, then she recommends that I have a serious chat with the gyny team on having a hysterectomy. I find it hard to believe that at 24 years of age that a hysterectomy is my only option. In my mind that just isn’t an option and there has to be others.
I struggle with my conditions day to day as it is, throw in recovering from major surgery and the complications that come with that procedure and it doesn’t seem worth it. As you can imagine I’ve been quite wound up about it; I would love to hear from anyone who has had similar postnatal complications, and if you don’t mind sharing I would be curious to hear what treatments you tried.