In our recent search for an accessible home following being served with a S21 notice and my changing health needs, we have encountered a disappointingly high level of discrimination and prejudice. Finding an accessible property has proven to be a challenging and frustrating process, not because suitable accommodations do not exist, but simply due to the discriminatory attitudes of several estate agents/landlords we have encountered.
In both private and social housing sectors, we have faced barriers. Despite legal protections against discrimination based on disability, we have been told by multiple landlords that they do not accept wheelchair users or those who do not have traditional full-time employment. The scarcity of accessible social housing options only adds to the difficulty of finding a suitable living situation before our S21 expires.
What has become abundantly clear throughout this process is that the real obstacle we face is not my health or disability, but society’s unwillingness to make simple accommodations for individuals with disabilities. Accessible housing should not be considered to be a luxury but a basic necessity. Yet we find ourselves constantly met with obstacles and roadblocks. While there may be laws in place to protect against discrimination, they seem like empty gestures in the face of the everyday reality.
It is time for society to prioritize accessibility and inclusivity in housing and other areas to ensure that individuals with disabilities are able to live independently and with dignity. The current state of affairs is unacceptable, and it is up to all of us to work towards a more inclusive and accessible society for everyone.
What? You found me already?! Dang you’re good. Though I suppose being back here in my second home isn’t really the best hiding place. But hey I had you for a minute there 😉
All jokes aside, I was admitted last Friday back to my local hospital. It wasn’t a surprise. I’d been going down hill quickly since my last discharge; unable to keep down food, meds or fluids for more than a few minutes at a time. I was feeling incredibly unwell.
My local practice has an amazing Advanced Nurse Practitioner (ANP) who takes fantastic care of me. She started doing regular tests to monitor me. My renal function was dropping fairly dramatically despite valiant attempts to sort the issue nothing helped so off to the hospital I was sent and have remained.
So far I have remained my usual medical mystery self. A Zebra to the core. Tolerating anything orally for generally mere minutes at best. Whilst urology have ruled things out on there side, my symptoms remain just as severe. Referrals have been made to the inpatient dietitian and gastro team so here’s hoping they’ll turn up at some point and they might have some fresh ideas..
I’ve had some new followers to this blog and it’s accompanying Facebook page recently, some of whom have been curious as to what on earth is wrong with me; after all the name implies Dystonia but a multitude of conditions get discussed. It’s a good question. So I thought I’d take a moment to write a short post reintroducing myself to you all.
I started this blog back in September 2012 after my life felt like it had been turned upside down. I’d been training as a midwife at Anglia Ruskin University Chelmsford and felt as if I was living my calling. However I was plagued by ailing health that got more and more severe.
I had to go on medical leave at the end of my first year. Despite my determination I would never return to midwifery, which to this day still breaks my heart. My body was no longer my own. I was wracked with spasms, needing a wheelchair to get about, I couldn’t even feed myself. It took months going from doctor to doctor, hospital to hospital, ambulance after ambulance until we finally met my old neurologist who finally shed some light on what was happening to me.
Initially I was diagnosed with functional Dystonia. A diagnosis that I fought against. I’d been physically abused as a teen by my father and this trauma led doctors down the functional route. Five years later my diagnosis would be changed to Generalised Dystonia. Upon my diagnosis I felt so lost. I’d moved back home, had no independence, lost my career and no one really seemed to know what Dystonia was. I made it my goal to educate myself as much as possible. So I set up this blog and it’s Facebook page as a way of connecting with others who were going through similar experiences, and as a way of raising awareness of the condition. Advocacy has become a great passion of mine.
Over the years more conditions have been diagnosed, such as Classical Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardias Syndrome, Lyme Disease Osteoarthritis and more. I’m surprised I don’t shake with the amount of medication I take. Learning how to manage all these conditions and live a full life has been hard and is still something I am trying to learn to balance. The symptoms and pain I experience in a day change hour to hour, I dislocate multiple times a day, have vocal tics, spasm, etc. It can be a minefield to manage. I’m very lucky that I now have a career as an author with books 7,8 & 9 being published this year, which gives me the freedom to write around my health and my family.
This site has become a diary of sorts. Where I can let out the awful days, whether it’s a physically bad day or an emotional bad one. Or celebrate the triumph’s with you all, which is something I try to do often. It’s a way of processing my conditions in a healthy manner while also raising awareness and supporting others. I find when I need to reflect on how far I’ve come in learning to manage my conditions through medication/physio/wheelchair/splints etc reading back through my past posts is a great aid. I can easily reflect on my progress, and see the milestones that I thought I’d never meet; such as graduation (I studied publishing instead) having children, getting my independence back through my electric wheelchair.
I’ve had this blog for coming up to eleven years now. While I hope I don’t need to add anymore conditions to it, I don’t plan on stopping posting anytime soon. I’m so grateful for the readers and friends I have made through here and for their support. Thank you.
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 👏
Left on Sunday where spasms were ok. Right is today
It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.
Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.
Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.
Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.
I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)
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.
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.
The Cancard UK is a fantastic leap forwards for pain patients and people with qualifying* chronic conditions in the UK. Essentially it is a card issued by Cancard LTD to its membership that provides evidence to the Police that the holder has a qualifying medical condition for which medical cannabis may be prescribed. This card indicates to the the police that the holder is therefore in possession of cannabis for medical reasons and that that they should confident in using discretion when they encounter a Cancard holder providing they are in possession of small quantities.
*You can find a list of qualifying conditions of their site, upon application you be asked to either provide a summary of care or have your GP sign to prove that you meet application criteria.
Why is the Cancard necessary?
Currently there is a short list of qualifying conditions for that entitle you to a private prescription of cannabis in the UK. However these are extremely expensive; An initial appointment* costs around £150, a follow up appointment which is required every couple of month £65, each prescription at least £30 per month. *Pricing examples taken from The Medical Cannabis Clinics.
For most people these prices are just not affordable, especially not long term. However it is known, and more evidence is coming out in support of this, that for certain conditions cannabis can provide significant relief, reduce pain, and help manage symptoms.
Does this make it legal?
No the law has not changed, however all police forces in the UK have been briefed on the the card. It has been co-designed and is backed by senior members of the police force, and guidance has been issued by them stressing that officers should feel confident in using their discretion in cases of possession when the holder is also in possession of a Cancard. It does, however, prove that you are legally entitled to a cannabis prescription which is a huge step forwards.
Cancard UK
If you are interested and want to know more I would highly recommend spending some time on their website and also on their social media. Not only can you apply for the card through the site which is an easy process, but it is also full of great resources such guides to self medication, how to handle being stopped by the police, the different components in cannabis and how each one affects different conditions such as epilepsy, spasms, pain etc. The Cancard UK is a great tool to utilise as well, one of the most recent videos was a tutorial demonstrating how to make it into a oil, which for those who prefer not to smoke is a very handy guide.
Next Steps
Currently the card does not cover growing your own plant at home, and pharmacies are still not selling to card holders. However, they are working on expanding so that growing is covered and therefore reduces the risks taken by the user.
As the world adjust to Covid-19, those of us shielding in the UK (and the thousands of other impacted disabled folk) have read multiple news report to see how it will impact us next. Reading through each new regulation brought in to ‘flatten the curve’ screamed ableism. Whilst I agree the new rules were needed there was no consideration for the disabled people in society. Even under tier three regulations when we were allowed to reemerge from our homes after months of shielding, the regulations had no adaptions for us. They were discriminatory at best; put yourself in our shoes and suddenly being faced with having no access to a public disabled bathroom, having to que to shop with no where to sit when your physically need to, a lack of parking because many disabled spaces are now being taken up by outdoor seating for pubs and restaurants. Many disabled people who were being interviewed for research by Inclusion London reported that they felt excluded and marginalised.
There was a fantastic article in The Guardian today, with an interview by paralympian Sophie Carrigill addressing inequality, specifically around how the needs of disabled people have been ignored throughout our multiple lockdowns; you can read the article here. I completely agree with her, my social media is full of adverts every couple of scrolls trying to encourage me to sign up to one fitness program or another. Even my gym is going live and notifying me, along with influencers left, right and centre. Yet I am aware of only two people currently who cater with workouts for the disabled. What really shocked me though was when I went to comment under the article on facebook. It was disability discrimination and frankly simply disability hate comment after comment. The completely ignorance of people was astounding.
Adaptive Workouts – Disability FriEndly
A fellow Dystonia warrior Gina, runs Adaptive Martial Arts (I’m meant to be trying this when I’m having a healthy run myself!), which you can do via Zoom currently. The second, is a woman I recently found on instagram who teaches dance via her wheelchair her handle is @katestanforth .
Disability Discrimination – The evidence
There has been a significant rise in negative attitudes towards people with disabilities since the start of the pandemic, or to be more specific since the start of the shielding and need to wear a mask. Its not hard to find evidence of this, its all over social media but also sadly there multiple news and police reports on the subject.
A report by the neighbourhood watch found that a recent survey carried out found 62% of deaf and disabled people organisations reported an increase in disability hate crime referrals on the previous weeks – this was just after it was announced face masks were to become mandatory. I myself have twice been yelled at for not having mask on, once whilst relocating my jaw and once yesterday whilst having a sip of a drink.
The findings from Inclusion London Briefing are really quiet troubling about the rise in Disability Hate Crime during the course of this pandemic, you can read it here. To name a few examples 1) A rise in hate crime by neighbours including a rise in hate crime against disabled children whilst they are at home by neighbours. 2) A rise in verbal abuse against disabled peoples and instances of being spat at whilst out of the home due to inaccurate perception the disabled person being a ‘virus spreader’. 3) An in increase in online hate crime, often on social media platforms, in which disabled have been that their lives are inferior and that they are taking up resources from non disabled people.
Disability Inclusion Post Lockdown
Where do we go from here? It’s going to take a lot of work and advocacy to get us to some level of equality – which the Inclusion London Briefing article briefly does touch on. I don’t know when that will happen and how we go about getting the public to flip their perception again. Part of the way that perhaps that can happen is that when we come out lockdown the regulations allows for disabled people to use our bathrooms when necessary, and doesn’t turn our much coveted gold dust parking spots into garden seating for pubs. But that would only be the start, we need a whole lot more to turn peoples attitudes around.
With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.
So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!
Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.
Colourful heart enlarging in further colours being touched by a human figure in blues and purples
I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.
Dystonia and Me 