Twelve years ago, Dystonia turned my life upside down, marking the beginning of a long and complex journey. Losing one’s health is a challenge that many of us face, but it’s one that few are prepared for. Initially, my mindset was consumed by the desire to “conquer” Dystonia and return to my career as a midwife. This remained my focus for many years. However, more recently, I’ve shifted my perspective to prioritize living a fulfilling life alongside my Dystonia. This shift has not been without its challenges, as I’ve had to come to terms with the fact that some of my previous goals are no longer attainable. Yet, I’ve found this mindset to have helped my mental health
One of the most significant lessons I’ve learned over the past twelve years is the importance of self-advocacy. I’ve grown in confidence in my ability to effectively communicate with medical professionals and educate myself about my condition. This confidence has been crucial in managing my health I’ve developed a passion for advocating for individuals living with Dystonia and promoting greater awareness about this condition. I believe it’s essential to shed light on the realities of living with a disability and the necessary changes that must be made to create a more inclusive society.
I highly recommend Dystonia UK to anyone seeking advice or information about Dystonia. This charity was a lifeline when I was first diagnosed, and I still frequently utilize their resources today.
When I stumbled across the article in the Guardian during the early hours of Saturday morning I was horror struck. “Sajid Javid calls for patients to pay for GP and A&E visits” the bold headline all but shouted. The fear that boiled up instantly is one I imagine Sajid Javid is not familiar with. Fear of what might happen to you if you cannot access the medical help you need. A familiar fear. Rumours have circled for years that the Conservative government wants the NHS to fail so they justify privatising it. It’s a statement we’ve all heard, and although it’s one I’ve always dismissed as a rumour it’s still brought that stomach churning fear with it.
Could I afford my life changing treatment if it was private? No. Would I be able to afford my almost weekly GP appointments,a necessity to lower my hospital admissions? No. Would I be able to afford my multiple monthly A&E trips for my regular dislocations/spasms/seizures/etc? Nope. Not a chance. Would I have a hope of affording inpatient care – I was admitted twice in November, once in December, and twice more in January. There isn’t a flying monkey of a chance. That’s before we factor in operation costs, ambulances, outpatient appointments etc. It’s a terrifying prospect.
I’ve experienced life without my regular injections and daily meditations, I end up hospitalised on a feeding tube, blind due to eyes spasms, body twisted in spasm and jaw dislocated. It’s hell. It’s an experience I wouldn’t wish on anyone. Yet it’s what I would live with if dismantling our NHS happens.
Yes right now Sajid is only talking about GP and A&E fees. But once we allow the government to open that door will we be able to prevent a tidal wave of change from crashing through? For many just those two charges would be too much at a time where we already have people relying on public warm spots due to the cost of living crisis. I feel his suggestion will simply limit access to our incredible NHS, further isolating the vulnerable and the disabled.
I’ve had some new followers to this blog and it’s accompanying Facebook page recently, some of whom have been curious as to what on earth is wrong with me; after all the name implies Dystonia but a multitude of conditions get discussed. It’s a good question. So I thought I’d take a moment to write a short post reintroducing myself to you all.
I started this blog back in September 2012 after my life felt like it had been turned upside down. I’d been training as a midwife at Anglia Ruskin University Chelmsford and felt as if I was living my calling. However I was plagued by ailing health that got more and more severe.
I had to go on medical leave at the end of my first year. Despite my determination I would never return to midwifery, which to this day still breaks my heart. My body was no longer my own. I was wracked with spasms, needing a wheelchair to get about, I couldn’t even feed myself. It took months going from doctor to doctor, hospital to hospital, ambulance after ambulance until we finally met my old neurologist who finally shed some light on what was happening to me.
Initially I was diagnosed with functional Dystonia. A diagnosis that I fought against. I’d been physically abused as a teen by my father and this trauma led doctors down the functional route. Five years later my diagnosis would be changed to Generalised Dystonia. Upon my diagnosis I felt so lost. I’d moved back home, had no independence, lost my career and no one really seemed to know what Dystonia was. I made it my goal to educate myself as much as possible. So I set up this blog and it’s Facebook page as a way of connecting with others who were going through similar experiences, and as a way of raising awareness of the condition. Advocacy has become a great passion of mine.
Over the years more conditions have been diagnosed, such as Classical Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardias Syndrome, Lyme Disease Osteoarthritis and more. I’m surprised I don’t shake with the amount of medication I take. Learning how to manage all these conditions and live a full life has been hard and is still something I am trying to learn to balance. The symptoms and pain I experience in a day change hour to hour, I dislocate multiple times a day, have vocal tics, spasm, etc. It can be a minefield to manage. I’m very lucky that I now have a career as an author with books 7,8 & 9 being published this year, which gives me the freedom to write around my health and my family.
This site has become a diary of sorts. Where I can let out the awful days, whether it’s a physically bad day or an emotional bad one. Or celebrate the triumph’s with you all, which is something I try to do often. It’s a way of processing my conditions in a healthy manner while also raising awareness and supporting others. I find when I need to reflect on how far I’ve come in learning to manage my conditions through medication/physio/wheelchair/splints etc reading back through my past posts is a great aid. I can easily reflect on my progress, and see the milestones that I thought I’d never meet; such as graduation (I studied publishing instead) having children, getting my independence back through my electric wheelchair.
I’ve had this blog for coming up to eleven years now. While I hope I don’t need to add anymore conditions to it, I don’t plan on stopping posting anytime soon. I’m so grateful for the readers and friends I have made through here and for their support. Thank you.
It’s been a long day. I arrived at the walk-in unit before 8 this morning in agony and with an obvious infection in my incision site.A half hour later I was on my way to hospital being sent straight back to the surgical assessment unit, ive since bounced around the wards for a few hours as they are full to the brim.
My incision site has been leaking pus and the pain I have internally can only be described as a scaping and burning sensation. It’s been leaving me in tears unable to move. The member of staff I saw was lovely. Quickly established that I needed my suprapubic catheter changed to a new one due to the infection and did so. Despite the morphine I struggled with the pain. The reg came to check and make a plan “once the infections gone you’ll learn to adjust to the pain”. A sentence that seems utterly barbaric to utter to a woman shaking in pain, clearly unwell, and whose just expressed the severity of the pain she’s in.
I count my lucky stars for the team member who was in charge of looking after me today. Who could see how much I was struggling and did everything she could for me.
I’m now waiting for a bed on the ward where we can get antibiotics started and try to get my pain under control.
In my head life after the suprapubic catheter insertion was going to return to normal pretty instantly. I didn’t really factor in healing time (which is prolonged due to my eds), or think much about the lifestyle adjustments I was going to need to make. Typical me really. Full speed ahead mindset with no allowances for my health; you’d think I’d be a dab hand at this by now.
The first 48 hours or so my mindset was pretty good. I was just so relieved to have got through the operation without any major complications and was still dopey from the morphine. Yesterday and today have been a lot harder. The bladder and urethral spasms have been constant, the insertion site has leaked frequently, and the scrapping sensation in my bladder leaves me wanting to remain motionless. I was discharged with very little information on how to care for the catheter or what to expect/, how to manage. Simply we’ll see you in six weeks.
We discovered quite quickly that even my usual clothes were no longer suitable. My leggings which I live in are simply too tight for the bag to go underneath without compressing it. Whilst I could wear the whole system on the outside, I’m not there mentally yet, to brave being out and about with that on show yet is daunting. These probably all seem like trival problems but they add up.
I know once all the pain has settled down and we find a medicine to help with the bladder spasms etc I will feel better about it all. I just wish I had been more informed on what to expect and what to do once I was home. On a more positive note I am so thankful for the support group on Facebook that I found who have been a treasure trove of information for me the last few days. I have ve always found comfort in information so this group has been a saving grace.
Well that’s the first surgery of the year done and dusted. After much anxiety over preop appointments falling through, fear of it being cancelled due to arriving on the ward and finding out that surprise surprise I had a temperature, and the team not being overly sure over the best way to handle my misbehaving jaw – to now be recovering on the ward is such a relief.
There had been some back and forth over how they were going to carry out the surgery due to my jaw having the potential to spasm and dislocate which could impact their management. My last surgery went fine until waking up when it dislocated and I needed to be sedated to have it relocated. A situation we all wanted to avoid repeating. One option presented was to have a spinal anaesthesia and be awake. I declined this as my neurology team have always stressed that they don’t want anything invasive being done to my spine due to all my health complications. This disappointed the team here and we chatted about this a few times, as understandably to them this was the safest way to proceed, however I chose to go ahead with the general as my neurologist was always very clear on the matter.
It went really well which is fantastic. They’ve inserted a suprapubic catheter; which is a catheter that is inserted through an incision in my lower abdomen and into a small incision in the bladder. I’ve had bladder issues for about eleven years now but over the last year these got severe. I reached the point in the summer where my bladder just stopped working and I was unable to void anymore. We tried intermittent catheterising but due to my tremors and spasms in my hands along with frequent dislocations in my fingers this was impossible on some days. Over the last few months I’ve ended up in hospital on multiple occasions with UTIs, kidney infections and retention.
When my consultant originally announced this next step I felt quite down. It seemed like such a spiral in health and I was overwhelmed. However I’ve had time to come around to it all and the relief I now feel having had the operation is significant. This should hopefully mean I start feeling much better, infections should stop being a regular occurrence and life should return to its usual level of uniqueness. So I’m embracing my new addition with a happy heart. Now to recover and get well enough for surgery no2 on my jaw.
I have loved snow for as long as I can remember. I’m a winter girl. It lights a spark in me like nothing else. My eyes are forever scanning the grey winter skyline in search of signs of an incoming flurry.
It doesn’t matter that the freezing bite in the air adds another layer of pain to my joints, or the kiss of the snow brings on more spasms. All of that is worth the delight in hearing the crunch of the snow, the fits of laughter of my children as they attempt to stay upright (whilst their dad dramatically falls in the snow), watching as they all run ahead in a cascade of ice, snowballs , giggles and shivers. It brings me such happiness.
Our little exploration may have exhausted me, but it was worth every single moment.
Well I’m back. In the hospital that is. After a short escape and my catheter spectacularly failing I was instructed back to return to the hospital. I was ushered back to the ward and greeted by baymates from the previous day. The nursing staff quickly whipped out the original catheter and placed a larger one in.
Whilst the original one was by no means pleasant, I’d got through the insertion with barely a grimace having been used to catheterising myself daily anyway. This second one was something else. It took several painful attempts to insert, immediately I found myself experiencing a burning sensation that left me in tears and trying not to move so as not to aggravate the sensation. The staff reassured me it should pass.
This morning, after no sleep thanks to pain, the consultant ordered medicine to ease the bladder spasms, assured me it would help and then I’d be discharged. It took 12 hours for the medicine to come to the ward, I’ve only just been given it. I have spent the day begging for relief. The bladder spasms I could deal with, the bypass round the catheter I could deal with, the burning sensation in the urethera? That I couldn’t cope with. The searing relentless sensation frankly overwhelming. After a day being inconsolable the nurses removed it. The relief was immediate. I’ve no idea why it happened when the first one was ok. They are now monitoring to make sure I don’t go back into retention and can cope with intermittent catheterising in the meantime.
The indwelling catheter was meant to be a solution until they could do the op to fit the suprapubic catheter. Hopefully I’ll be able to manage without it until then.
As the early light of Friday morning broke through the damp cover of night I lay in bed counting the minutes until my Drs practice opened. The pain in my lower back had been agony all night and I suspected my ongoing UTI had progressed. After a night of no sleep 8am couldn’t arrive quick enough.
By the time I arrived at my doctor’s for my 11am appointment my temp had hit 40.3c and I was in urinary retention, my heart rate and blood pressure were through the roof. I can vaguely remember being encouraged out of my wheelchair chair and onto the bed whilst they phoned an ambulance. Shivering with fever chills, and desperately tired. Three hours later I was in the back of an ambulance on my way to the hospital.
I don’t think I’ve ever seen A&E so busy. The staff were amazing and after quickly establishing my veins were playing hide and collapse they had an ultrasound out to guide them. They hooked me straight up to antibiotics for an upper kidney infection and told me urology would make me a plan.
Waiting for ward rounds
Saturday morning three burly Urology consultants appeared at the end of my bed. “What would you like us to do?” The question caught me offguard. I’m rather used to staying quiet and listening so as not insult god complexes, or putting my thoughts across in a tonned down manner. When I explained I’d be happy to be guided by them, it was really refreshing as they took the moment to explain my options. I could that day under local anesthesia have a suprapubic catheter put in: this would involve a small incision in the tummy allowing them to put the catheter through and to the bladder. Alternatively I could have an indwelling urethera catheter and go home, to come back at a later to have the suprapubic catheter put in under a general. I chose the latter option giving them a brief explanation about my Ehlers-Danlos and how due to EDS you can pump me full of local but I’ll still feel everything. They happily accepted my decision .
Back in 2019 whilst pregnant with my daughter I’d agreed to surgery where they attempted to remove a large suspicious mole from my breast without pain relief or sedation due to the pregnancy. The local failed. I felt every cut. The team did their best to distract me but the whole thing was traumatic. I made the decision at the time to not put myself back in that situation ever again. So even though the suprapubic catheter is meant to be better long term I’m happy to wait a few extra days/weeks for it if it means they can put me under.
So why has this all happened? My guess is that it’s down to the Ehlers-Danlos. My bladder has been dodgy for well over a decade, it’s just recently sped up in its decline. I’m feeling a little emotionally up and down, frustrated mainly but I think it’s healthy to acknowledge that. I know this will all feel normal soon.
*On a side note if you use catheters and have any tips on making it more comfortable please get in touch!
Being a mum is without a doubt one of the best, and most challenging, joys in my life. Whilst there is an element of predictability, there is also the beauty of their ever growing imagination. We never quite know what they will ask next or what game they’ll invent. It really is a blessing. Hearing my youngest call out in her sleep the other night “Sing for your treasure pirates!” is a memory I will treasure with a chuckle.
Last week my son and I found ourselves in the local children’s ward again. Luckily this time our stay was short. He had clung to me like a young monkey. The way children do when they’re feeling awful. He’s five now, and as much as I love holding him, especially as he’s usually so full of beans and always on the go, 13 hours like that took a physical toll. I knew better, but when our children are ill pacing goes out the window. It’s a week on and I’m only just starting to feel myself again.
We had found ourselves in hospital without much warning having been sent straight there by the GP. Normally I go armed with extra clothes, extra meds, books, etc. This time I just had my handbag. I will now always carry an extra day’s worth of meds with me.In the days after his discharge the fatigue was at levels it hasn’t been for awhile. My partner found me taking a break whilst getting ready for church on Sunday morning. I felt ridiculous but at the same time knew I needed to listen to my body
It’s a new balance I’m needing to learn to walk. In reflection I can see ways I could have helped limit the physical impact. For example I could have explained my conditions and asked if I could have had a small blanket to fold up to cushion behind my back where it was spasming etc. Hopefully this will help a tad next time.
You’ll be glad to know that although still on antibiotics my eldest is back to his bouncing about cheeky self.
Dystonia and Me 