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.
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.
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 👏
Whenever I get ill with something like a cold/your more normal bugs, or as I prefer to call it muggle sick, my body always protests. Sunday I was feeling off and presumed I was having an ocular migrane, I get them often so didn’t really dwell on it. Alarm bells started going yesterday when I woke up with a temperature, sore throat, ringing ears and eye pain still. The lateral flow was negative so chalked it all up to an awful cold. After all I’d had covid a few months back and I am fully vaccinated.
It was a bad night of neck, jaw and back spasms. Upon opening my eyes this morning all I wanted to do was put pressure on them both. I recognized the pain. I had the same issue for almost six weeks following contracting covid last autumn. Sure enough this mornings lateral flows came back positive straight away. Which explains why my spasms have been playing up. My body is doing its usual protest, a way of saying it’s overwhelmed.
I’m feeling pretty run down but greatful to be vaccinatinated.
I woke up the other week with a pain that felt slightly familiar but I couldn’t quite put my finger on it. I lay in bed gently testing my muscles and noting what was spasming or dislocated. After all it’s not unusual for me to wake up with a dislocation here and a spasm there. Satisfied that no major joints were out of place I got up. Then it hit me.
The pain in my vaginal area brought tears to my eyes. I immediately clamped my thighs together. I can only describe it as feeling like my uterus was plummeting out of me. A quick check with a mirror confirmed what my nerves were telling me. Prolapse. Again. This time far worse.
Ive been back and forth to the drs multiple times since that morning. Honestly the difference between seeing a male Dr and female Dr is gobsmacking. When I saw the female practioner I got asked how I’m managing, offered pain relief, and my concerns listened to. When I spoke to the male Dr he dismissed my pain levels telling me that he couldn’t understand it as a prolapse shouldn’t hurt – never mind the fact I also had an Infection in my uterus at the same time. He gaslighted me completely.
I’ve been researching like a madwoman since I started this journey in desperation to make sure I am referred to the right department as quickly as possible. 38 weeks is the current wait time to our hospitals urogynyolgical clinic. 38 weeks. I can’t wrap my head around that figure. Meanwhile I’m sitting here with my prolapse literally outside of my body causing a significant amount of pain.
Ive been pretty upset, a lot of tears have been shed. My mental health has not been great and I’ve not really got my head round this yet. I know that the prolapse will be due to my EDS. I can accept that. What I’m finding hard is the fact I can barely do more than a few minutes movement before needing a long rest due to pain.
Im not sure how long this journey will be but I’ll keep it documented. I’m sure this reads as a ramble but it helps me to get it all written down.
After over a year of my follow up gyny appointment being rearranged and cancelled repeadedly by the hospital due to Covid, I finally saw the consultant. I arrived with high hopes, a notebook full of the requested data they’d asked me to log, and a very grumpy daughter who would have preferred we’d stayed on the bus.
After reassuring staff that I’d contracted Covid at the start of the month and hadn’t escaped isolation, they took my temp which was border line high. Feeling thankful that a quick round of begging and reassuring them that I felt fine, I was allowed to stay. Two hours later, I was seen with grumpy toddler who was vocalising her unhappiness in tow.
Normally when I have a female gyny the appointment goes slightly better. I explained that my periods were getting worse 48 days long on average but 73 was getting more frequent. That they left me physically sick and due to the change in hormones increased my eds symptoms. She brushed it to one side.
“You will have to learn to live with it”. I’m pretty my face was a picture. My emotions were not in check as I was desperate for this appointment to go well, having last time discussed albation with me. Meds are no option for me due to my EDS, I understand that, hell we had even tried that. I queried the more radical surgical and was told not untill I’m forty, at the moment I am 28.
I can’t get my head around it really. I’m lucky to get more than two weeks between each cycle. It leaves me in pain, sick and exhausted. But yeah sure “learn to live with it”.
Moments ago I quickly signed off a Facebook live as my partner walked through the front door, home from his evening gym session. Normally during my lives I’m very good at opening up and sharing my concerns but tonight I struggled. They are superficial to say the least.
Yet as Damon sat down I burst into tears. This seems to have become an evening routine. I’m physically struggling at the moment so I’m cutting corners where I can to save energy and reduce pain. This is starting to really bother me. Things like washing my hair is something I do as little as possible as it’s painful, energy drainage, and often leads to a flare in pots, eds and dystonic symptoms. Yet I don’t want to look unclean. The solution I have in mind I’m not to sure of. I don’t know whether to go for a drastic buzz cut and wig wearing while it grows back; the difference being I would follow the no poo method which would result in less physical stress on my body, or just to try to wig wear on days when I’m struggling.
I’m still exploring my options. I’m not reaching for the razor on the back of feeling emotional no matter how tempting it may seem. The plan currently is to reach out to hairdresser’s first for advice on the above idea but also on the issue of hair loss which I currently have in certain patches which gets me down. I’d love to hear from anyone whose done similar.
We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.
In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.
I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.
I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.
Botox for me is life changing. Without it I would be hospitalised on an NG tube, unable to talk, swallow, eat, or drink. I’ve ended up in that exact situation previously. It’s unpleasant to say the least. I’m fortunate enough to receive Botox from my neurologist every twelve weeks and then a top up at the six week mark in the cycle from my maxofacial team to keep my jaw going.
I am extremely fortunate to experience very little in the way of side effects. Generally speaking I get ‘botox flu’ for a few days after and a flare in my complex regional pain Syndrome symptoms in my arm. This time though my mouth has been weakened slightly by the Botox. It’s not physically painful in anyway at all, it simply means the corners of my mouth are dropping.
At first I didn’t notice it to much, then I was hyper aware. I found myself wanting to be in pictures as little as possible as I knew I’d fixate on the turned down corners of my mouth despite the focused effort to smile. I was finding myself deleting photos of myself and the kids, myself on days out etc, over something as ridiculous as an altered smile.
It’s not as obvious in both photos above, but the fact I’ve kept these picture is a big step forward. I started to think about the example I was setting my children. It was not a healthy one. I do not want them to grow up thinking that we should scrutinize photos for imperfections. Photos have always been for us a treasure trove of memories, to help remind us of the many memories we have made together. Both my kids love getting our photo albums out to look at and this something I hope long continues.
My altered smile, is not permanent, however it is a reminder that I am one of the lucky ones who receives treatment and responds to it. That is something to celebrate not to fixate on. Whether it stays droopy or returns to normal I’ll keep snapping photos of our days out making memories. After all it wasn’t long ago I thought Dystonia meant the life I have now would be impossible. Forever thankful for Botox injections and medication.
Today was botox day up in London with my lovely neurologist. He’s happy that the medication we started on a few months back is keeping me far more stable, which is amazing, so we are keeping that in my treatment plan. I’m currently on a medium dose so we have room to play with should we need to come winter when I typically go down hill due to the cold.
I’ve finally gotten the date for my video fleursoscopy which is the middle of next week. I’m a little nervous but it will be good to shed some light on what’s been going on internally and if there is anything specific that we can do/change to tackle it. This is to tackle the chronic aspiration.
Then it’s on to blood tests. Whilst I don’t mind these particularly, my veins are world class players at hide and seek. No matter how much I drink before hand they like to hide or better yet collapse. I often leave blood tests looking somewhat like a pin cushion. These are being done just to double check there’s nothing being missed and causing any issues whilst we wait for Gyny to see me. They were meant to see me almost a year ago. However they keep rearranging and cancelling my appointments, which my lovely GP is chasing. In the meantime I’m left with regular pain flares that leave me doubled up in pain.
I’m hoping now that more people are vaccinated that appointments/refferals may start going back to normal. Specially orthotics is one appointment I’m looking forward to, my knees and wrists need new splints. It’s not an urgent appointment in anyway but it would make day to day life a bit easier and reduce pain a little more.
In the meantime I’m ticking along. I’m looking forward to the schools breaking up and making the most of the summer holidays before my eldest starts primary school full time.