Posted in Archive, February 2020, march 2022, november

Baseline Pain

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.

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, 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, December 2021

Waking Up Blank

Staring up at a pair of eyes, a mouth moving above me, making a sound that honestly I don’t quite understand and I don’t like the noise. The light is too bright. I just want to close my eyes and sleep. I like sleep. I’m tired. It’s too loud.

I open my eyes again. The words from above demand it. Ah the eyes have a name. I recognise my partner. Why won’t he let me sleep. The floor is hurting me.

I need sleep.

More noise. I don’t like it. I want to shut my ears. Turn the lights off. Cocoon my body in comfort and warmth. My body doesn’t feel like mine. It’s clumsy and not easy to move. It hurts.

***

When I come round there’s no telling how long it will take before I’m back in the room so to speak. The amnesia affect can last an unnerving amount of time. It often takes multiple conversations before I’ll retain information. So my fiancĂ© will have to repeadedly inform me that I’ve had a seizure. I’ll get upset and he will calmly explain what’s happened. 1) has he had to phone an ambulance 2) what medicines he’s administered 3) how/where I am 4) any obvious dislocations that need addressing 5) ask me (if I’m with it) how I’m feeling and what I need.

I had a bad one the other day. I fell during it and hit my body darn good. Four days on and in still in pain. I came to bed early tonight as I couldn’t bear my leg pain anymore and need to lie down. My neck feels like I’ve been hit by an iron bar.

I’m grateful that they are more controlled in comparison to when they first started. But boy do they hit me something rotten when they happen. Heat bags are my best friend at the moment!

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

Pacing; Using A Wig

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.

Trying a wig for the first time to explore the idea

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.

Posted in Archive, August 2021

Freedom; Are The Disabled Included?

We recently were fortunate enough to spend a chunk of time down south visiting my mum. It was a lovely break away from routine, and the kids were over the moon to get to have a ‘extra long sleepover’ with their Granny. If it weren’t for the newly added hand sanitizers that appeared on every corner one could almost forget about the pandemic for a moment.

On our way home we chose to pull in at a service station to let the kids stretch their legs after hitting the que of another incident. The kids dad took them off to the toilets whilst I popped into the shop. I only needed a couple of items, and instantly looked for a basket as one hand is strapped up at the moment due to scaphoid fracture. There were none.

It may sound dramatic to say that I started to feel anxious at this point but it’s true. I can’t hold things in my fractured hand and my other is occupied with my trusty walking stick. In the end I resorted to cradling the items in the crook of my elbow. I dropped them repeatedly. The staff noticed from behind the counter and did nothing other than stare. Other customers, who were incredibly kind, helped me gather up my shopping as I shuffled about, hunted for a basket and confirmed that due to Covid they’d been taken away.

Eventually, feeling really rather embarrassed at my inability to hold a couple of items, I approached the staff at the tills. When I queried the lack of baskets, I was met with a shrug and a murmured grumble about Covid. I asked about how they expected their disabled customers to cope, after all they had watched me struggle and drop my items several times. In reply he simply offered to scan my shopping and bag it for me, let me pay, then he would watch it so I was free to carry on shopping. It was crystal clear that they had not faced with this situation so far.

Numerous charities and research groups have been saying this through out the pandemic; the disabled community are being left behind. Article after article has stated how disabled people have reported feeling overlooked, forgotten, isolated, ignored. Just today there was a piece on how two York Councillors were not allowed to vote on accessible parking in their area as by being disabled they had a prejudice – madness!

Freedom day has come and gone, yet now things have reopened I’ve found that actually I’m running into more restrictions that affect my disability than prepandemic – for example in the same service station they wouldn’t open up the disabled toilets as they didn’t have a designated staff member free to monitor them. They had a member of staff a few feet away though in the ladies directing women into cubicles.

While it may sound like I’m riled up about not very much it’s not something im going to let slide. I don’t by any means think that the staff in the shop should have magically have transfigured a chocolate bar into a basket but they could have offered a bag for me to go around with or to have walked alongside me and helped. Either way I would have been and out in less than half the time if if id just had a little bit of aid. Which is something I’ll put in my letter when I write to them later this week.

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

An Open Letter to Stagecoach & Arriva Bus

Dear Stagecoach & Arriva Bus,

I’m writing you an open letter as one of your disabled service users, and a frequent customer. I’ve had a few issue traveling before but today took the biscuit. Myself and my two young children were using your service to travel home from a hospital appointment. We flagged a Stagecoach bus down first. The driver pulled over, explained that he had already allowed two prams on, one was in the allocated buggy area and the other in the wheelchair space; neither parent wished to fold their pram down or move and off he went. I was more than slightly shocked as this is against your covid-19 policy which is listed on your site. I’ve screenshot it below, along with a picture taken from another of your buses which points out that it is law for a buggy to be moved from the wheelchair space should one need to board. Yet we were left in the rain.*

screenshot taken from stagecoach accessibility facts and question page focusing on wheelchair v prams.
Stagecoach Accessibility FAQS
Sign stating the law that wheelchairs have priority

Arriva Bus, it was one of yours that we flagged down next. This time, there was only one pram on board. Inexplicably the parent and pram had placed themselves in the wheelchair area despite the buggy section being free. When your driver asked them to move so we could board, they refused to move and the driver simply shook his head at me said “Sorry, love.” And drove off. This caused quite the stir at the bus stop, with others asking if this was something that happened often. It is quite disappointing to say that this is not the first time that has. Here is a screenshot from your own website Arriva of your policy for wheelchairs and prams.

Arrivas website instruction of priority of wheelchairs over prams
https://www.arrivabus.co.uk/help/conditions-of-carriageArriva Bus Carriage of Wheelchairs and pushchairs

Considering how much time has passed since Doug Paulley first brought his discrimination case to the supreme court back in 2012 over this matter I really expected this issue to be non-existent/on its way out. However experiencing it twice today within a matter of minutes is beyond a joke. How do you explain it to a four year old that two bus drivers didn’t want to follow the law? “Sorry we are not getting that bus either because the driver didn’t want to point out that it’s actually law for her to move over into the pram space. Despite it being his job.” Its disheartening, upsetting, discriminatory and lazy.

I would ask that both companies refresh your drivers memories on your own policies, and on the law. You may have stuck signs inside the buses but that is pointless if you are not going to act on them!

R. McDowall

*I want to acknowledge the kind stagecoach driver who was coming towards the end of a break and witnessed all of this. After waiting a few minutes and realising it was a while before anymore buses going in our direction would be there, cut his break short and drove over to us to let us on. I couldn’t have been more thankful.