Posted in Archive, July, July 2022

Urology Pick Me Up

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.

Posted in Archive, June 2022

Neurological Comfort Blanket

*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.

Posted in Archive, march 2022

Bandages & Bruises

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.

Ready for mass

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.

Posted in Archive, COVID-19, January 2022

Covid Round Two

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.

Meme depicting the a squishy monster covid monster clinging to a cartoon person whose trying to escape
Posted in Archive, January 2022, September

Day to Day Management

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.

Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck

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.

Off to church. Scarf ‘hiding’ my neck support

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

Posted in Archive, November 2021

Learning To Cope With A Prolapse

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.

Posted in Archive, September 2021

‘Learn to live with it’

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”.

Posted in Archive, August 2021

Adapt, Rethink, Go

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.

Posted in Archive, July 2021

Injection Day and referral thoughts

Picture of Rebecca wearing a facemask and holding a takeaway coffee cup sitting in a hospital waiting room waiting for an appointment. Wearing a brown cardigan, black white spotty top, blue disposal facemask,
Waiting to see my neurologist

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.

This made me laugh a lot. Credit to Theraspecs
Posted in may 2021

Ambulant Wheelchair Users

For those who don’t know me personally when they see me coming along me in power chair they naturally presume that I’m wheelchair bound. It’s always an interesting situation when they see me move my legs so I’m more comfortable, or stand up to get in to the house. Sometimes I need the chair full time due to injury or severity of spasms, other times I need it due to length of time we’re out for and my body cannot handle it.

Whilst I’m confident in using it and appreciate how much freedom it provides. I’m not quiet used to the interactions yet with people with nothing nice to say. There’s been a few occasions of people telling me if I lost weight I wouldn’t need the chair, or to stop being lazy and walk. Presumptuous really considering they have no clue why I’m in it but also hurtful. I’ve always been a sensitive soul and I need to learn to toughen up.

I’m currently using my chair full time due to yet another injury thanks to my EDS. I find it odd how many people still are surprised by ambulant chair users. It’s an area that deffinently needs more discussion and awareness. I’ve used wheelchairs on and off for years due to my many conditions, as my EDS has deteriorated the use has increased. It enables me to still function and go about my day to day life independently, something that is very important to me. I couldn’t be more greatful for my chair.

Using my power chair to get home from church.