Yesterday I attended my first appointment with my urology consultant. I had no idea what to expect. Urology issues are common in my family but I’ve never pushed to have my issues investigated. I had a scan once in 2012 and was told oh it’s just an overactive bladder just try to go to the loo less and you’ll be fine. I was training to be a midwife, I was queen of going to the loo less.
I hadn’t realised just how nervous I was. I’ve been coping with on/off incontinence issues for a longtime now, it can take me twenty minutes to void my bladder and it’s never fully empty. Throw in my prolapse on top and things are just not great in the pelvic region. When he asked me to explain what was wrong the words just tumbled out at top speed, I was vaguely aware of my hands nervously shaking. He stopped me a few times, got me to take a breath, reassured me there was no rush he had time to listen to me and that I could explain in as much detail as I could.
He was eccentric in his mannerisms, but put me completely at ease. After my neuro left this was the pick me up I needed. Before I left his clinic I had appointments in my hand to come back for further testing, instructions for at home testing and a date to review the results. The NHS at its finest.
*Professor Wonderful has been my neurologist for a little over a decade. When I first became ill at 19 my symptoms broke me. I went from being a confident but accident prone 19 year old, who loved every second of her degree to a spasming, wheelchair bound young adult whose carefully planned out career was slipping through her misshapen fingers. The day my mum collected me from uni I cried the whole way home. I was on sick leave but I knew I wasn’t coming back. There was a twisting pit in my stomach that knew it.
Over the next few months we would clasp at every hope offered that I would get better. Meanwhile I continued to deteriorate. Every road we took was slightly different but each one mentioned Prof Wonderful name as the expert in my symptoms. My mum being the force of love that she is found his contact details and emailed. A few weeks later we sat in his office.
After months of seeing consultant after consultant, each previous appointment more crushing than the last I didn’t want to get my hopes up. I was used to being told I could stop my eyes from spasming if I wanted to, being told by multiple consultants that my symptoms were the result of the abuse I’d gone through in my teens, or being left with the results failed operations (a mouthful of broken wires ) with the spasms broke the wires being used to try to control and he ghosted me rather than fix the mess. My expectations were low. Yet my preconceived judgement vanished when he shook my hand and immediately noticed my hypermobility, he referred me to a specialist that day which resulted in my EDS diagnosis. I can remember crying in the lift after the appointment. They were tears of hope.
He did so much more than provide injections. He listened. When I got ahead of myself when my symptoms improved and thought I could go back to midwifery he gently disagreed. He was right. When I’ve needed my team’s to communicate he has fought to ensure they all do to help ensure I’m getting the right care. When he left his post at the hospital I was first under him at I was reassigned to a different consultant. He refused to give me injections at my usual frequency or dose. I went downhill fast, so contacted my original neuro who immediately had me transferred back to his care.
When he informed me on Tuesday he was leaving and no longer would have a patient facing role it was all I could do not to be cry like the last time. I knew it would happen one day. I’d just hoped it would be a long way off. After all these years he is essentially a comfort blanket of sorts, a safe place amongst the god complexes and arrogance that I’ve come against time and time again. I’m nervous about this new chapter. Here we go.
I’ve had a few people on the Facebook fan/follower page for this blog asking for more information about myself recently. After coming up to ten(!) years of blogging and activism I feel it makes sense to post this small reintroduction for those who have joined me on my journey more recently.
First off my name is Rebecca, but please call me Becca. I’m 29 years old and not quite sure how I’m turning 30 this year when it feels like I only finished sixth form a year ago. I grew up in the south of England in Hertfordshire, and now live in the North West with my Fiancé and our two beautiful children.
In 2012 I became ill with Dystonia, untreated chronic Lyme disease, and worsening classical Ehlers-Danlos syndrome amongst many other things. I was bed bound for a very long time and took to blogging as a way of therapy, advocating, and connecting with others in similar positions. I’ve come a long way since then thanks to getting my Lyme disease treated, along side getting a medication routine that has helped control my other symptoms somewhat.
I have continued to blog on here, do lives on facebook, and advocate in various other ways as life with chronic illnesses is never the same. Even now when it’s drastically different from when I first became symptomatic there are still occasions where I have to fight for help. Without access to the medication I take daily I would be in hospital constantly.
Blogging has helped me feel less alone in this journey. I hope it’s helped those who read these post too.
Living with any chronic illness brings with it by nature a certain amount of unpredictability. For me that has meant no hour is the same from one to the next, let alone one day to the next day so forward planning always has to come with the understanding that extreme last minute cancellations are not just possible but likely especially when going through a rocky patch with symptom management. Part of pacing is actively choosing where to rest and cut back and sometimes that means staying home. A fact many healthy people forget. It results in people viewing me as unreliable/flakey/lazy and as a result many friendships have been lost over the last decade.
When I first became ill the isolation was deafening. It’s quite astounding how loud the silence is when people who you thought were your friends disappear when life gets hard. At the time I was confused and angry. Now I’m grateful, it showed me who my true friends were and ten years on I’m still very close to them and look forward to our reunions.
Recently I’ve gone through another bad spell. I’ve been able to do less than previously, I’ve cancelled multiple plans last minute despite my best efforts. But between my general chronic illness and complications caused by new issues my daily activity tolerance /spoons has been appalling. Basic activity wipes me out. Now this would have been devastating to me previously but now I’m just proud I’m listening to my body and learning where to cut back. I’m not going to lie it’s still upsetting losing friends but it’s not having the impact that it once would have had. I’m grateful to the community of online friends with chronic illnesses I’ve built rapport with whose understanding is everything.
Our wedding date is set for the end of next year and we couldn’t be more excited. The kids ask ‘how much longer” almost every day, and are very much looking forward to playing their parts on our special day. We have got well and truly stuck in to the planning and booking of our venues.
This is where my arsenal of equipment that holds my body together will come in handy. We will be splinting up my knees and ankles in the hope that I can hobble down the aisle on my walking sticks. I’ve currently got a Pinterest board dedicated to walking sticks in different shades of white/ivory/champagne so that once I’ve brought my dress I can match them. However if I have to roll down the aisle that’s fine too (it’s what I do every Sunday anyway 🤣 during mass), so I can always spruce my chair up with flowers.
One of the big factors for us is getting me through the day without a trip to A&E or an ambulance having to be called. Sounds simple really, doesn’t it? Yet it’s a very real possibility. I tire very quickly these days and my body goes downhill when that happens, so utilising my aids and working breaks into the day/sitting down frequently will be important. Having these planned in advance seems best for not running out of spoons* too quickly.
I’ve spoken to our photographer about my disabilities and he’s had experience with people with similar issues. Hes happy to listen and go off what I’m saying. If I’m doing well then fab, not feeling so hot then that’s ok too we can rejig positions. I was quite nervous about this conversation so this was a big relief that he was cool with it.
I’m ever so slightly taller than my partner which I am over the moon about as it removes all temptation to break out the heels I hung up years ago. I used to love love love a chunky wedge heel. But it’s just asking for trouble. So sensible flat shoes it is with good ankle support it is – to be honest I’d be quite happy barefoot but I think the church and the hotel wouldn’t be as thrilled. I’ll be gradually breaking these in as part of my EDS means my skin breaks super easily. It takes me months to adjust to shoes even when they’re a perfect fit without my feet bleeding.
The start of last week I found myself stood in front of the walk-ins reception desk, politely frustrated. The receptionist, with her raised in exasperation eyebrows, questioning loudly my reason for being there. Yes it did sound ridiculous. Who attends a hospital for a dislocated jaw, then loses consciousness while inhaling penthrox and comes too no longer on the a&e trolley but face first on the floor with two nurses helping your brain fogged self back to bed; before swiftly relocating you and discharging you despite protests of I think I’m hurt. Then presents at the unit 3 days later complaining of pain. I get it I sound mad. In one final attempt to be taken seriously I lift my top up, lowering the left side of leggings and underwear, revealing the deep purple bruising that consumes the left side of my body.
I feel embarrassed and humiliated. To have had to expose my body in a packed waiting room so as to be taken seriously is maddening. However this is isn’t the first time and it won’t be the last. In that same visit I was criticized by drs and told my pain threshold must be low as my walking wasn’t bad enough for serious damage He soon ate those words. People forget that I live every day in pain, this happens even in situations like this where we’ve just discussed my conditions and the professional has glossed over my issues rather than accepting my offer to explain further. I wake up and relocate the joints that came out over night every morning. My baseline of daily pain is that of most healthy person’s A& E trip level.
Between my hip/leg damage, general nerve damage and nerve flare from my Botox I’m doing my best to pace and get through the day slowly. It’s tiring but worth it. So much awareness is still needed in this world.
I’ve not had to resort to Lorazapam this week for managing my jaw spasms/dislocations (yet). So far my usual meds and my Dr ordered bandage support, are doing the job along with Damon relocating it when needed. I hadn’t realised just how much the Lorazapam had been affecting me until it started to work its way out my system.
Now this isn’t a surprise. Clonzepam and Diazepam are listed as allergies for me as they cause psychotic reactions when I take them. It seem to be a family of meds I don’t get along with but unfortunately need at some point now and then unless we find a better alternative to turn to. This time it was like someone had extinguished all hope. Even though my Dystonia is well controlled these days, the fact that my Ehlers-Danlos is getting worse seemed unmanageable. Crushing. Uncontrollable.
Now that it’s out of my system I can see how much of an affect it was having. Yes my EDS is on a downwards spiral at the moment, but we’re adapting and I am blessed with a supportive Fiancé and family who are helping me. My life is very much one full of hope and love. It’s helpful that I have my blog to turn to read to myself on bad days.
Botox is on Friday which I’m much looking forward to. I cannot wait to take these bandages off.
Last night I spent hours upon hours sitting in my local hospital A&E waiting room. I witnessed paramedics having to treat patients on board their vehicles as the hallways were already overflowing. Drs were having to discuss treatment and admit/discharge from the waiting room. It was heartbreaking. I’d have left if it weren’t for the fact my jaw had been out for three days and desperately needed relocating.
When I was called through, the Dr passed me the penthrox and told me to use it for five minutes and she’d me round to relocate me after. They left the curtain open to keep an eye on me. I vaguely remember feeling giggly. I’ve had this medicine a few times and that’s my normal response. But never this long. Next thing I know I’m coming round having lost consciousness and somehow ended up on the floor. They quickly got me back on the chair, manipulated my jaw into place and bandaged me up. The bandages must remain on now untill I see my neuro.
I mentioned at the time I had considerable pain on my left pain but this was ignored. Despite falling unconsciously and somehow to the floor they never thought to look me over. I now have a significant bruise, my pain is high and I’ll be heading to the walk in tomorrow to get checked over. When I was diagnosed with EDS it was impressed on to that swelling and bad bruising always need to be looked at.
Whilst I appreciated the hospital was indeed ran off its feet. People like myself with chronic complex conditions can’t afford to slip through the net. I hope the demand eases off them soon.
This morning was meant to be normal. For us that meant breakfast, chair yoga, meds, get the kids ready for their football club and rush out the door. Then it quitens down from midday. We do homework, see family, and enjoy nature. Today life had other ideas. Damon had already tried to relocate my jaw several times with no success before the kids football. By the time we were on our way home I was crying and asked to be dropped at the hospital.
I knew in myself that this was the right call. I don’t get upset over pain easily. If I’m like this then I need to be seen. Despite being rushed off their feet I was called through and quickly wheeled in to resus very quickly. The reason for this being that jaw dislocations can pose a risk for compromising ones airway. Normally they don’t bother x-raying me, but today they did. A number of drs were shocked at how bad it was, and that I’d let it stay like that since Wednesday.
The doctor looking after me wanted to try a few different methods before resorting to sedation. So a wad of tongue depressors were inserted into my mouth for half an hour to attempt to tire the muscles. Personally I don’t find this helpful, it just hurts, but I’ll do what I’m asked if it gets me treatment that I need eventually.
In the end they did have to sedate me. The Dr told me after that it was a extremely strong spasms pushing the jaw out and it was very difficult to relocate. The first time they got it in the jaw dislocated again immediately. Once they managed it for a second time they quickly bandaged me up to encourage/help support the jaw to remain in place.
I’m now home feeling worn down, emotional, bruised and tired. I’ve got to remain bandaged for a while as it settles and start being more conscious of my jaw movements. Not the sort of headwear I’d been planning on wearing to church tomorrow but heyho. Got to keep laughing.
Each passing minute, moment, breath, feels like a drawn out hour at this time of writing. By Botox was due at the end of January. It was scheduled for April. Thank Lord it was moved to mid March. My medication routine had kept me healthier for longer than I had dared hoped for, but now my little Dystonia alien is kicking my ass with vengeance.
My jaw has been dislocated for a full 24 hours straight now. It has been coming previously on and off before that. The aches in the joint and the building spasms told me all I needed to know. I’d adjusted my food intake to make sure I wasn’t aggreviating it, I was regularly applying heat packs, and doing basic physio stretches. On Tuesdays I sneezed and dislocated the jaw, and it came out again hours later while I was enjoy a nice brew.
I’m extremely lucky that while I was pregnant with Evie at around 9 weeks I got admitted to the gyny ward due to suspect Hyperemesis Gravidarum and kidney infection. The maxfax team came and taught my fiancé how to relocate my jaw to save me living in the A&E department trying to educate the staff. Them taking the time to teach Damon had a life changing impact as it’s dramatically cut down the amount of time I spend in A&E have it manipulated back in place.
The shear strenth of the spasms shock and terrify me. Despite muscle relaxants Dame has struggled to relocate my jaw today. Normally this would mean I need to take a trip up the hospital before it becomes worse. But honestly I don’t want to go. I know the drill, they’try twice, when it fails they send me by ambulance to Aintrree, the med students try and fail, I get scheduled for surgery, and then Dr. Godcomplex cancel the surgery because he doesn’t believe in Dystonia or EDS.
If you’ve made it this far through my foggy ramblings! Congrats 👏