I had really debated whether or not I would post this blog. As you will know over the last 7 years I have strived to share the ups and downs of my journey with you all in a brutally honest fashion. However what I am experiencing right now is something I am finding to be increadibly difficult to deal with and awfully humiliating at times. However as I have found in the past that ripping the metaphorical band aid off and sharing bluntly with you all to be rather helpful I figured I may as well start at the beginning.
I shall try to keep it brief. About three weeks ago after several days struggling with a dislocated jaw and severe spasms to the point I couldnt eat or drink I collapsed in the kitchen. The resulting head injury leading to an ambulance needing to be phoned. Several seizures later I was whisked off to resus. I dont remember much of the first four or so days in the hospital. Luckily despite being severly ill I had the sense to keep notes of my concerns, for example being denied antisickness and painkillers following several hours of vomitting and seizures.
For some unknown reason that was never communicated to me all of my medications were stopped the whole time I was in the hospital which led to uncontrolled seizures, spasms and pain. My kidneys were found to be damaged, there are changes to my spine and in my brain matter, I have been diagnosed with epilepsy. Twice whilst I was in there I had an NG tube placed and failed. Unfortunately the second time round it took the drs 6 hours to view the xray showing it misplaced. In this time I was quite distressed due to the fact I was violently vomitting blood due to a tear from the ng in the lower eosphaoghes for the better part of the 6 hours all with a dislocated jaw. A rather agonizing experience.
Throughout my 6 days in hospital I was on IV fluids 24 7 due to the fact I currently am having extreme difficulty swallowing and can go days at a time unable to do so. At the point of discharge I had managed a few sips in a 3 hour period and was discharged with no plan of action. Its been a hurrondous time since then with me only getting worse. However I am now also completely bowl incontinent which has left me terrified to leave the house. But being the mum of a 2year old means fear cant win.
Hopefully I’ll have a more optimistic update soon.
It has been a little over two weeks since my trip to the hospital where I was subsequently put on a strict liquid-only diet whilst I wait for a referral to see the oral surgeons. The liquid diet has to a degree reduced the overall number of dislocations I’m experiencing on a daily basis which is positive, however, my jaw dislocations are still very frequent. Days such as today I find quite frustrating, I don’t know how best to help myself.
The Dr. I saw who did not believe in Dystonia or have any understanding of EDS was extremely disapproving of the fact that my local hospital had given me a small dose of morphine after the third attempt to relocate my jaw failed. I’d spent over 24 hours dislocated and only had paracetamol throughout, I had not once asked for painkillers until this point. His attitude had left me worried about how to manage my pain at home. I am on my 12th jaw dislocation today. I have broken down in pain multiple times, yet all I have taken to manage it is ibuprofen and paracetamol, alongside applying lavender wheat bags to ease the surrounding muscle spasms that are aggravating it. Normally I would have taken something stronger such as Codeine or Tramadol by now, which is a treatment plan agreed by both my GP and Neurologist, however I am so aware if on the off chance I have to return to the hospital for help with relocation I will need to inform them of what medications I have taken. I am fed of misinformed and ignorant professionals treating me like a drug seeker. I should not have to deprive myself of the painkillers I need because of one arrogant man.
I feel extremely frustrated. I know that referrals such as these take their time; however, I am concerned that this will just be the start of a very long process. Whatever ‘fix’ they come up with for my jaw, will have to take into account my Dystonia, and that seems like an impossible ask.
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.
I first heard the words Complex Regional Pain Syndrome and Fixed Dystonia back in 2009; I had just been admitted to hospital with unbearable pain, colour changes, temperature fluctuations and a hypersensitivity to touch in my right leg. I would spend the following six months confined to a hospital bed learning to retrain the damaged nerves. It was a hell I would not wish on anyone. I am one of the lucky few, whilst I never achieved full remission, the pain eventually reduced to a tolerable level which only flares up if I lie down on that side of my leg for too long or bash it. Unfortunately I was rediagnosed with CRPS in summer 2015, this time it had manifested in my left shoulder blade and arm. Once again it had been caused by repeated injections to the same site which resulted in damage to the nerves.
CRPS has been a condition I have fought for many years, generally I have a good handle over it. I know what to avoid and how to help myself as much as possible. Yet every now and then I have days and nights like the last 24 hours. It is hard to describe the agony in which I have spent it in. The night before last I simply bumped my thigh whilst getting out of bed. The pain at the time seemed excessive for such a little bump, but I presumed if I lay down and rested for a few minutes it would die down to its usual level of simple discomfort. Instead with each minute that went by the pain intensified as did the spasms.
I made the decision yesterday not to leave the house, I knew I would be fully reliant on my wheelchair and that even the lightest breeze would reduce me to tears. Instead I kept myself fully medicated on Tramadol which dulled the pain slightly but nowhere enough. I needed both my walking sticks to hobble the few steps to the toilet. Each accidental brush from the cat as it went past left me biting back screams and in yet another wave of tears.
The spasms and pain kept me up for the majority of the night. I managed just over three hours sleep in the end. The spasms twisted my leg into positions that resulted in multiple subluxations, and my nerves flaring meant that I could not bare the touch of clothing, the mattress beneath me, or a duvet. It’s hard to explain to someone this type of pain, at the point of time I would have jumped at the opportunity to have the nerves severed. To be honest, even right now at this time of writing when the pain is slightly reduced but still horrific I would beg for it to be done. Let me put in perspective for you, full blown labour is easier to deal with.
Whilst the pain is improved today I am still struggling. I feel as if someone has sliced my leg open multiple times from my thigh down to my soles and has rubbed vinegar into the wounds. The constant spasm in my thigh has left me exhausted and desperate for a relief that seems as if it will never appear.
I know that in a few days time in all likelihood I will be back down to my usual levels of pain and spasms, but there is a niggling fear at the back of my mind that it won’t reduce further. That fear is more terrifying to me than anything.
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.