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.
With every general election, and with every leadership contest, we get new a new prime minister. A new figure, each with their own agenda and view. When it comes to politics, my number one concern has always been for the potential impact that the candidate and party will have on the NHS. Many laughed when America elected Trump to the presidency and in my eyes I worry that the conservative party may have just followed suit.
During President Trump’s recent visit to the UK he stated that everything was on the table for a deal – including our NHS! Whilst Theresa May later retracted his statement, it is clear where Trumps eyes are focused for trade and both he and Boris Johnson made it publicly known that they are on good terms. Is Boris as brazen as to go as far as ignoring May’s stance and instead pursuing a US/UK trade deal which involves the NHS to a degree? Who knows but I for one wouldn’t be surprised.
So why such concern? As with any service, the NHS has its issues which is to be expected when it is incredibly underfunded and overstretched, however the NHS is a complete blessing. Without our NHS I could not afford my treatment: regular injections and medications allow me to eat, drink, swallow, see and communicate with others verbally. It is literally life changing. For many, such as myself, the possibility that the NHS could be impacted is a terrifying prospect.
At the start of January, I underwent a small surgery. I’d known for several weeks that I had needed it but due to being pregnant my surgeon wanted to wait until I was safely into the second trimester before we risked putting my body through the stress of it. I am by no means a stranger to surgery; due to my varying conditions I’ve had more surgeries than I care to think about. Whilst I was naturally nervous with all of them, this one was by far the worst. With my previous surgeries, it had always been carried out under a general anesthetic, this time, however, as much as I would have far preferred to be knocked out, I was wide awake and able to feel everything.
My surgeon had made it clear to me from the start that if he could have put me to sleep he would have done, but as it was a quick surgery he didn’t want to do so due to the pregnancy. A decision that I fully agreed with. The complication we faced was that I experience no response to the local anesthetic. It doesn’t matter the type or amount you inject me with, it does nothing. This is down to my Classical Ehlers-Danlos Syndrome. My surgical team and I have a very good relationship, and we talked at length about the possible sedative medications we could use to help me through the procedure; ultimately it transpired that the few medications that were appropriate to use I am severely allergic too. With no other options, I consented to undergo the surgery with no anesthesia or pain relief.
Clambering onto the operating table, staring up at the bright lights above and conversing with the operating surgeon went against everything that felt natural to me. My surgeon cracked joke after joke, trying to keep me focused on anything but the pain that his scalpel inflicted. Having to force yourself to lie steady, and not scream for help whilst someone is cutting into you, to try not to curl up in a ball and cry hysterically is hell. If I hadn’t needed the operation I would not have put myself through it.
I had wrongly presumed that because I can handle dislocations like a pro that this surgery would not be that much harder. Instead, I find myself waking up at night in a cold sweat, gripping my duvet, absolutely consumed with fear. Night after night I go to sleep and dream I am back on the operating table except for this time the pain never stops, the surgeon just keeps cutting bits of me away until there is nothing left.
I am fairly certain that the nightmares are getting worse due to the possibility of needing a c-section in the not so distant future due to a low-lying placenta. Whilst I know if this is the case my team will put me under for the operation, the irrational part of me has still built up a fear of once again being on the table able to feel everything. A position I hope never to be in again.
As some of you may already be aware of from my other social media channels, we are delighted to announce that we are expecting our second child this summer. I had many concerns at the start of my pregnancy due to my previous poor experience in having my health insufficiently managed whilst I was pregnant with my son. This naturally left me with many worries as it was not an experience that I wish to repeat. My current GP is incredibly supportive and refreshingly up-to-date with his knowledge on my mix of conditions which has meant that so far *touch wood* although the pregnancy is complicated it has gone much smoother than we had expected.
I decided to take a few steps back from my blog in the beginning months. My health was really not great and whilst normally I would process how this was impacting me by writing about my experience here I didn’t want to blog about the pregnancy until we were past the halfway point; nor did I want to write half stories. Over the next few weeks, I’ll be posting blogs reflecting on the different things I experienced in this time. I’ll be touching on being your own advocate to doctors, the emotional trauma/impact of going through surgery without anesthesia or pain relief, and acceptance when doctors tell you your the worse case they’ve seen but there’s nothing more they can do for you. The last few months have been easier than my first pregnancy yet extremely hard in their own way.
I’m currently awaiting the results of further testing as once again my cardiac problems have reared their ugly head. I spend most days with a resting heart rate of 130+. It’s uncomfortable, to put it mildly. We recently discovered that the type of EDS I was originally diagnosed with was incorrect and that I actually have Classical Ehlers-Danlos Syndrome which may explain my current cardiac complications. I have a few more tests to go before we know more.
This has been a very quick overview of the last few months which I apologize for, but there’s a whole series of posts coming soon.
Midwifery. One word that for me will always be bitter sweet. My dreams and aspirations 6 years on are still pinned tightly to it. It’s one of the reasons I struggle with having good spells with my conditions, which I know sounds ridiculous. Whenever I’m going through a particularly well controlled phase there’s a voice in the back of my mind that starts questioning whether now’s the time to start an HE access to Midwifery course so that once my son is in school I can apply to return. It’s a cruel mindset that I seem unable to shift.
I know my reality. I know that my good spells don’t last. That eventually as my injections wear off I will be wracked with spasms once again. I am accuately aware that due to my EDS my joints will continue to deteriorate; I’m 25 and already have been told I need a double knee replacement. If I examine what a good period means to me, you would probably laugh; a good spell still involves dislocating at least one or more body parts a day, it still involves high levels of pain, it still involves spasms to varying degrees. I know this. Yet as I lie in bed trying to catch up on some rest whilst my son naps I find myself reading the latest Royal College of Midwives articles because I daren’t risk falling behind on the latest developments in Midwifery just incase in time I go back.
My head knows that I should accept all this, my heart longs for my return to working on the wards, and my body is like an ice sculpture that has been left in the sun and is starting to melt and crack.
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.
Last Tuesday marked the 6 year anniversary since Dystonia made a joint shattering (literally) entrance into my life. Previously I’ve marked this day by reflecting on where my life is in comparison to where I had planned it to be; not a great way to spend it and usually resulted in a lot of tears. This year was remarkably different, for the first time in six years I didn’t spend the day in tears and focused on how truly blessed I am.
The reality of my conditions means that as I age my body gets deteriorates a lot faster than a healthy person would. I already need a double knee replacement but have agreed with the surgeons to delay this until my son is in school full time. I’m told its inevitable that I will end up reliant on power chair in the future. The time frame for this is unknown, so I’m focusing on doing what I can to strengthen my body against the battering it takes from the too frequent dislocations and spasms. I’m starting by shifting the weight, it’s slow progress but I am making progress. I’ve found some local HIIT classes for mums and babies that are happy for me to do what I can whilst my son plays beside me. A month ago I signed up to the body coaches 90 day plan, which unfortunately I’m only just starting as I dislocated both my knee and shoulder and needed to let my body recover. His workouts are harder than my body can cope with right now but I’m adapting them and feeling great.
6 years ago if you had told me that I would be OK with living with a mile long list of debilitating conditions I would most likely have bit your ear off. Now I can see how my experiences are shaping me, I’ve learnt to grasp every opportunity with open hands and jump feet first. Whilst the idea of a further 6 years living in this pain is not one that I can even start to wrap my head around. I know that I have the strength to battle it and succeed.