*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.
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.
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 👏
No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday
A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.
I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.
My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections
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”.
Toward the end of last week our youngest woke with a fever. She didn’t have a cough, a runny nose or anything that particular screamed that it could be Covid-19, nor were we aware of anyone that we had seen recently who had developed it. So we were not particularly worried. However we arranged for her to have a PCR test as govt guidelines list a temperature as one of the signs to watch for. We didn’t expect a positive result, thinking instead it was far more likely to be a normal cold. After all the kids seem to have colds constantly. Less than 24 hours later at 1am in the morning my phone buzzed to let us know we needed to isolate. She had covid.
We tried our best to keep the anxiety at bay. Both myself and my partner are fully vaccinated, having received our vaccines at the start of the year. Yet after shielding for so long, and reading up on the virus over the past 18 months on the many different issues it can cause, it was hard not to worry. Both my son and I were shielders. Stefan, tested positive two days later. Whilst he has been undeniably feeling rotten and suffered more than Evie, he has luckily coped far better than we expected and is now seeming more like his cheeky self again.
We thought that we may have escaped catching it. Almost a week went by and then Damon tested positive. I was already isolating away from the rest of my household to try and avoid catching it as I had developed sinusitis which my body was already struggling to cope with. At my partners suggestions I was feeling worse rather than improving on my antibiotics I took a lateral flow test. The test result line appeared in less than twenty seconds. So off we went for a PCR again, which soon confirmed what we all ready knew.
This extremely short blog has taken me nine hours to write – ridicules I know. The fatigue I am experiencing is unreal I keep falling asleep while writing it despite being sat up with laptop on me. My body is not happy with a mirad of symptoms between dislocations, nerve pain, fatigue, spasms, no smell and taste, itchiness all over, breathlessness and spams on the left side of face which feels is as if it is determined to detach itself from my skull and be on its’ merry way.
My apologies for not getting round to live on facebook today. I needed to sleep. Hopefully tomorrow if I am feeling up for it I will do but it will depend on how I’m feeling.