Posted in Archive, February 2024

Accessible Housing In the UK

The distinct lack of accessible housing for disabled people in the UK is a glaring issue that is often overlooked. Despite progress in making buildings more inclusive, many disabled individuals/families, such as myself, still face significant barriers when searching for suitable housing in both the private and social sectors. Data published by the government in 2020 highlighted that only 9% of homes in the UK have key accessibility features (Association, June 2020). It is estimated that over 400,000 wheelchair users are left living in properties that are neither adaptable or accessible (Association, June 2020). In the area I currently live, a town based in Merseyside, it has been three years since a fully accessible family home last became available (information provided to me by occupational therapy), and to rent a bungalow it is nearly 3x our currently monthly rent.

One of the main challenges we are confronted with is the limited availability of accessible housing options. Many properties are not designed with wheelchair users or those with mobility impairments in mind, making it difficult for them to move around freely and independently in their own homes. This is an area that I struggle with every day. I can no longer share a bed with my husband as I cannot access our bedroom and have no alternative but to sleep in the living room. The kitchen and bathroom present their own complications, to attempt to access them results in damaging the door frames, there is no turning space, and I rely on others to help me to perform basic everyday tasks. This loss of independence takes a signficant mental toll.

Often disabled individuals and their families are forced to agree to a property that does not meet the requirements needed to be accessible, with the view that they then spend tens of thousands of pounds on making the necessary modifications e.g.installing a lift, creating front and back ramped access, widening door frames, creating level access bathrooms, lowering kitchen appliances etc. The cost of these adaptations very quickly add up, and while there is some funding available , the mounting costs often put creating an accessible home out of reach.

Even when accessible options are available, they are often in short supply, leading to long waiting lists and too high a demand for these properties. This lack of accessible properties in both the social and private sectors creates an ever-growing mountain of disabled people/families being stuck in unsuitable living conditions, and unable to find a home that meets their needs. This impacts multiple elements of the individual’s quality of life, their employment capabilities and limits social interaction. Personally, I see this in my day-to-day life. I am unable to leave my house without physical assistance and often now only leave at weekends when the family can help, I have had to relinquish volunteering roles as I cannot physically attend, our living room doubles as my bedroom which leaves privacy very much wanting, and not having access to an adaptive bathroom is a nightmare.

The chronic lack of accessible housing throughout the UK desperately needs to be addressed. Accessible housing simply cannot be viewed as optional. It’s a necessity to ensure that all those who require it are enabled to live full lives, be able to access equal opportunities and live as independently as possible.

Posted in Archive, October 2023

Just Married

Saturday 28th October 2023 we stood in front of our loved ones at our parish church and said I do.

Left to right: my sister Eloise, my husband Damon, myself, my brother Alexander and my sister Chloë

It was an absolutely magical day which I will post about in more detail later in the week. I’d been panicking in the months leading up to the day about my health. After two bouts of sepsis this year alone, my bladder becoming paralysed, gastroparesis, heart complications and more I was worried I wouldn’t make it through.

I talked all this through with our church Father, venue, photographer, families and we brainstormed methods of helping me pace. During the service the church put two chairs out for us to sit on so I wasn’t taxing my body and they told me to stay seated if I needed to even if I should be standing. I kept a stick that I had brought specifically from Neo Walk Sticks, as I loved the clear fizz design, close by for the marriage rite and walking the aisle; these were my goals for the days, and I was thrilled to manage them.

For the rest of the day I used my wheelchair. Dancing the night away in my chair meant that I could spend the night rolling on the dance floor which I could never have done otherwise.

My little girl slept through the service on her uncles lap
Posted in Archive, November 2022

Fridays Ambulance Call Out

As the early light of Friday morning broke through the damp cover of night I lay in bed counting the minutes until my Drs practice opened. The pain in my lower back had been agony all night and I suspected my ongoing UTI had progressed. After a night of no sleep 8am couldn’t arrive quick enough.

By the time I arrived at my doctor’s for my 11am appointment my temp had hit 40.3c and I was in urinary retention, my heart rate and blood pressure were through the roof. I can vaguely remember being encouraged out of my wheelchair chair and onto the bed whilst they phoned an ambulance. Shivering with fever chills, and desperately tired. Three hours later I was in the back of an ambulance on my way to the hospital.

I don’t think I’ve ever seen A&E so busy. The staff were amazing and after quickly establishing my veins were playing hide and collapse they had an ultrasound out to guide them. They hooked me straight up to antibiotics for an upper kidney infection and told me urology would make me a plan.

Waiting for ward rounds

Saturday morning three burly Urology consultants appeared at the end of my bed. “What would you like us to do?” The question caught me offguard. I’m rather used to staying quiet and listening so as not insult god complexes, or putting my thoughts across in a tonned down manner. When I explained I’d be happy to be guided by them, it was really refreshing as they took the moment to explain my options. I could that day under local anesthesia have a suprapubic catheter put in: this would involve a small incision in the tummy allowing them to put the catheter through and to the bladder. Alternatively I could have an indwelling urethera catheter and go home, to come back at a later to have the suprapubic catheter put in under a general. I chose the latter option giving them a brief explanation about my Ehlers-Danlos and how due to EDS you can pump me full of local but I’ll still feel everything. They happily accepted my decision .

Back in 2019 whilst pregnant with my daughter I’d agreed to surgery where they attempted to remove a large suspicious mole from my breast without pain relief or sedation due to the pregnancy. The local failed. I felt every cut. The team did their best to distract me but the whole thing was traumatic. I made the decision at the time to not put myself back in that situation ever again. So even though the suprapubic catheter is meant to be better long term I’m happy to wait a few extra days/weeks for it if it means they can put me under.

So why has this all happened? My guess is that it’s down to the Ehlers-Danlos. My bladder has been dodgy for well over a decade, it’s just recently sped up in its decline. I’m feeling a little emotionally up and down, frustrated mainly but I think it’s healthy to acknowledge that. I know this will all feel normal soon.

*On a side note if you use catheters and have any tips on making it more comfortable please get in touch!

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, 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, 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

Acceptable Collaterable Damage for Freedom Day

With Freedom Day ear marked for July 19th and the majority of restrictions being casually tossed away one would have thought we were turning a corner where the public as a whole could breath a sigh of a relief. But with herd immunity being discussed again, talks of case numbers reaching 100,000 daily, it has to be asked are we offering up our disabled, our elderly and our unvaccinated under 18s as collateral?! Its worth remembering that six in ten people who have died of covid in the UK were disabled. The disabled community have been hard hit throughout this pandemic and failed by our government.

As a household two of us were classed as clinically extremely vulnerable and had to shield, perhaps it’s unsurprising that I’m not celebrating freedom day. I am double jabbed and have a degree of protection, but my four year old son who also had to shield, whose school seems to constantly have new cases, he has no protection from a vaccine yet the government suggest classes will no longer have to isolate?! Madness!

The term Freedom Day keeps being tossed around but what freedom is there truly when there is also talks of introducing shielding again for the clinically vulnerable this winter. I’ve spent 14 months shielding already. I understand why people are clammering for to get their normality back, yet surly little and gradual is better than throwing fuel on the fire?

We know so little about Covid-19 and indeed long covid. Can our primary school children/younger generation develop long covid? How will this impact in the long term?

Personally for me I’ll still be wearing a mask in crowded areas/public indoor areas, and keeps a distance from other people. I know people will think I’m over reacting however this is what I believe is best for my family and myself and until covid cases etc are much lower or a vaccine is introduced for children I feel it’s necessary.

Posted in june, June 2021

First MaxFax Injections in a Year!

Today I received my first lot of maxfax injections in a year! These are to help control my recurrent jaw dislocations. Normally these are timed so they are six weeks after my last lot of neurology injections to help max the benefits from both. The pandemic put a bit of a pause to that.

It was a new Dr today who treated me, who couldn’t quite believe that despite looking fairly normal, upon exam my jaw was still out of place. So we opted to switch things up. I had the usual jabs along with some new ones. Hopefully we will see some improvement.

I’d forgotten how much Botox flu can wipe me out. So I’ve medicated up and I’m mentally allowing myself to slow down for the next few days to help recover.

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.