advocacy – Dystonia and Me

Archive, July 2024

12 years of Dystonia

Posted on July 24, 2024July 24, 2024 by dystoniaandme

Twelve years ago, Dystonia turned my life upside down, marking the beginning of a long and complex journey. Losing one’s health is a challenge that many of us face, but it’s one that few are prepared for. Initially, my mindset was consumed by the desire to “conquer” Dystonia and return to my career as a midwife. This remained my focus for many years. However, more recently, I’ve shifted my perspective to prioritize living a fulfilling life alongside my Dystonia. This shift has not been without its challenges, as I’ve had to come to terms with the fact that some of my previous goals are no longer attainable. Yet, I’ve found this mindset to have helped my mental health

One of the most significant lessons I’ve learned over the past twelve years is the importance of self-advocacy. I’ve grown in confidence in my ability to effectively communicate with medical professionals and educate myself about my condition. This confidence has been crucial in managing my health I’ve developed a passion for advocating for individuals living with Dystonia and promoting greater awareness about this condition. I believe it’s essential to shed light on the realities of living with a disability and the necessary changes that must be made to create a more inclusive society.

I highly recommend Dystonia UK to anyone seeking advice or information about Dystonia. This charity was a lifeline when I was first diagnosed, and I still frequently utilize their resources today.

Archive, may 2024

Dystonia Superstar England – Shortlisted

Posted on May 31, 2024 by dystoniaandme

I am absolutely delighted to share that I have been shortlisted for the Dystonia Superstar England category in the Dystonia Awards.

As many of you are aware, I was diagnosed with Dystonia in my late teens, and over the past decade, I have been dedicated to raising awareness, advocating for those affected, and fighting for improved care and support.

I am now excited to invite you to show your support by voting for me through the link below, you are able to vote as many times as you like. I would like to extend my heartfelt thanks to those who nominated me for this award – I am truly grateful and moved.

https://www.dystonia.org.uk/awards-vote

April 2024, Archive

UK gov sick note proposal; ableist and stigmatising

Posted on April 19, 2024 by dystoniaandme

In a recent move by the UK government, changes to the sick note process have been announced that have raised concerns among disabled individuals and their advocates. The changes are said to make the process more efficient and streamlined, alongside helping to further cut the welfare budget. A move that is not surprising by a government who have repeatedly penalised disabled persons over the last decade.

The new process specifically targets those with ongoing mental health concerns adding needless stress and stigma. Furthermore, the lack of accessible working roles for disabled individuals makes it even more difficult for them to return to work. Many disabled individuals face barriers in finding suitable employment due to discrimination and ableism in the workplace. This has become a more noticeable issue in recent months due to the focus on stopping remote work for many businesses. Without the proper support and accommodations, many disabled individuals are unable to work, this will result many being unfairly penalized under the new sick note process.

This move by the UK government is sending a dangerous message that disabled individuals are not valued or deserving of support. After the UN hearing recently on the violation of disabled persons human rights, it is disheartening to see further backlash against the disabled community. This runs the risk of leading to further stigmatization and discrimination against disabled individuals, who already face many challenges in society.

The government must place more value on the account of the needs and experiences of disabled individuals when making policy decisions. Rather than demonizing and penalizing disabled individuals.

The changes to the sick note process in the UK are worrying and ableist, and they highlight the need for more support and understanding for disabled individuals in society. Disabled individuals deserve to be treated with dignity and respect, and it is essential that policies are put in place to ensure their rights and needs are met.

Archive, march 2024, September

‘Traditional Employment Is A Requirement’

Posted on March 2, 2024March 4, 2024 by dystoniaandme

Over the past few months, my husband and I have encountered a recurring challenge while searching for a new home: many landlords insist that both of us must be in ‘traditional full-time employment’. This has been quite an obstacle for us. Despite my nearly seven-year career as an author, landlords always seem wary when they learn that I receive PIP, while barely sparing a glance at my husband’s long-term employment history.

With our current landlord asking us to find a new home by the end of March, we’ve found ourselves having many alate-night conversation, trying to figure out a solution. I suggested that I explore alternative job opportunities that were disability friendly. In the early stages of my career, I used to write only during the night – while not ideal, it’s a balancing act I could manage again if necessary.

However, navigating the job market presented new challenges. While remote work was widely advertised just a few years ago, many companies now require office-based or hybrid roles. For me, a fully remote job is currently necessary due to my reliance on physical assistance to leave my home.

The more we talked about these issues, I kept coming back to the same questions:

What exactly is ‘traditional’?

If our household income meets your requirements, why should my disability or my job title matter?

At the moment, we don’t have a solution. There’s no magic fix. In the meantime, I plan to continue documenting these interactions and hope that we can make progress towards more tolerance and equality in society.

International Wheelchair Day 2024

Posted on March 1, 2024 by dystoniaandme

Wheelchairs are often associated with frailty, illness, and vulnerability, but they serve as valuable tools that offer freedom of movement and independence, liberating individuals from limiting circumstances. They are remarkable aids that significantly enhance the lives of those who use them.

Access to an electric wheelchair has had a positive impact on my quality of life. After experiencing frequent dislocations from using a manual chair, the electric wheelchair has allowed me to move around independently and safely, factors which cannot be stressed enough as to their importance.

As technology continues to advance, the future looks promising for wheelchairs, and I am eagerly anticipating the developments to come.

Archive, January 2023

An Open Response to Sajid Javid

Posted on January 22, 2023January 22, 2023 by dystoniaandme

When I stumbled across the article in the Guardian during the early hours of Saturday morning I was horror struck. “Sajid Javid calls for patients to pay for GP and A&E visits” the bold headline all but shouted. The fear that boiled up instantly is one I imagine Sajid Javid is not familiar with. Fear of what might happen to you if you cannot access the medical help you need. A familiar fear. Rumours have circled for years that the Conservative government wants the NHS to fail so they justify privatising it. It’s a statement we’ve all heard, and although it’s one I’ve always dismissed as a rumour it’s still brought that stomach churning fear with it.

Could I afford my life changing treatment if it was private? No. Would I be able to afford my almost weekly GP appointments,a necessity to lower my hospital admissions? No. Would I be able to afford my multiple monthly A&E trips for my regular dislocations/spasms/seizures/etc? Nope. Not a chance. Would I have a hope of affording inpatient care – I was admitted twice in November, once in December, and twice more in January. There isn’t a flying monkey of a chance. That’s before we factor in operation costs, ambulances, outpatient appointments etc. It’s a terrifying prospect.

I’ve experienced life without my regular injections and daily meditations, I end up hospitalised on a feeding tube, blind due to eyes spasms, body twisted in spasm and jaw dislocated. It’s hell. It’s an experience I wouldn’t wish on anyone. Yet it’s what I would live with if dismantling our NHS happens.

Yes right now Sajid is only talking about GP and A&E fees. But once we allow the government to open that door will we be able to prevent a tidal wave of change from crashing through? For many just those two charges would be too much at a time where we already have people relying on public warm spots due to the cost of living crisis. I feel his suggestion will simply limit access to our incredible NHS, further isolating the vulnerable and the disabled.

Archive, January 2018

You’ll learn to deal with the pain

Posted on January 10, 2023 by dystoniaandme

It’s been a long day. I arrived at the walk-in unit before 8 this morning in agony and with an obvious infection in my incision site.A half hour later I was on my way to hospital being sent straight back to the surgical assessment unit, ive since bounced around the wards for a few hours as they are full to the brim.

My incision site has been leaking pus and the pain I have internally can only be described as a scaping and burning sensation. It’s been leaving me in tears unable to move. The member of staff I saw was lovely. Quickly established that I needed my suprapubic catheter changed to a new one due to the infection and did so. Despite the morphine I struggled with the pain.
The reg came to check and make a plan “once the infections gone you’ll learn to adjust to the pain”. A sentence that seems utterly barbaric to utter to a woman shaking in pain, clearly unwell, and whose just expressed the severity of the pain she’s in.

I count my lucky stars for the team member who was in charge of looking after me today. Who could see how much I was struggling and did everything she could for me.

I’m now waiting for a bed on the ward where we can get antibiotics started and try to get my pain under control.

Archive, January 2018

Overwhelmed But That’s Okay

Posted on January 8, 2023 by dystoniaandme

In my head life after the suprapubic catheter insertion was going to return to normal pretty instantly. I didn’t really factor in healing time (which is prolonged due to my eds), or think much about the lifestyle adjustments I was going to need to make. Typical me really. Full speed ahead mindset with no allowances for my health; you’d think I’d be a dab hand at this by now.

The first 48 hours or so my mindset was pretty good. I was just so relieved to have got through the operation without any major complications and was still dopey from the morphine. Yesterday and today have been a lot harder. The bladder and urethral spasms have been constant, the insertion site has leaked frequently, and the scrapping sensation in my bladder leaves me wanting to remain motionless. I was discharged with very little information on how to care for the catheter or what to expect/, how to manage. Simply we’ll see you in six weeks.

We discovered quite quickly that even my usual clothes were no longer suitable. My leggings which I live in are simply too tight for the bag to go underneath without compressing it. Whilst I could wear the whole system on the outside, I’m not there mentally yet, to brave being out and about with that on show yet is daunting. These probably all seem like trival problems but they add up.

I know once all the pain has settled down and we find a medicine to help with the bladder spasms etc I will feel better about it all. I just wish I had been more informed on what to expect and what to do once I was home. On a more positive note I am so thankful for the support group on Facebook that I found who have been a treasure trove of information for me the last few days. I have ve always found comfort in information so this group has been a saving grace.

Archive, January 2023

Surgery 1 Done

Posted on January 3, 2023 by dystoniaandme

Well that’s the first surgery of the year done and dusted. After much anxiety over preop appointments falling through, fear of it being cancelled due to arriving on the ward and finding out that surprise surprise I had a temperature, and the team not being overly sure over the best way to handle my misbehaving jaw – to now be recovering on the ward is such a relief.

There had been some back and forth over how they were going to carry out the surgery due to my jaw having the potential to spasm and dislocate which could impact their management. My last surgery went fine until waking up when it dislocated and I needed to be sedated to have it relocated. A situation we all wanted to avoid repeating. One option presented was to have a spinal anaesthesia and be awake. I declined this as my neurology team have always stressed that they don’t want anything invasive being done to my spine due to all my health complications. This disappointed the team here and we chatted about this a few times, as understandably to them this was the safest way to proceed, however I chose to go ahead with the general as my neurologist was always very clear on the matter.

It went really well which is fantastic. They’ve inserted a suprapubic catheter; which is a catheter that is inserted through an incision in my lower abdomen and into a small incision in the bladder. I’ve had bladder issues for about eleven years now but over the last year these got severe. I reached the point in the summer where my bladder just stopped working and I was unable to void anymore. We tried intermittent catheterising but due to my tremors and spasms in my hands along with frequent dislocations in my fingers this was impossible on some days. Over the last few months I’ve ended up in hospital on multiple occasions with UTIs, kidney infections and retention.

When my consultant originally announced this next step I felt quite down. It seemed like such a spiral in health and I was overwhelmed. However I’ve had time to come around to it all and the relief I now feel having had the operation is significant. This should hopefully mean I start feeling much better, infections should stop being a regular occurrence and life should return to its usual level of uniqueness. So I’m embracing my new addition with a happy heart. Now to recover and get well enough for surgery no2 on my jaw.

April 2022, Archive, Wedding

Disability & Wedding Planning

Posted on April 14, 2022April 14, 2022 by dystoniaandme

Our wedding date is set for the end of next year and we couldn’t be more excited. The kids ask ‘how much longer” almost every day, and are very much looking forward to playing their parts on our special day. We have got well and truly stuck in to the planning and booking of our venues.

This is where my arsenal of equipment that holds my body together will come in handy. We will be splinting up my knees and ankles in the hope that I can hobble down the aisle on my walking sticks. I’ve currently got a Pinterest board dedicated to walking sticks in different shades of white/ivory/champagne so that once I’ve brought my dress I can match them. However if I have to roll down the aisle that’s fine too (it’s what I do every Sunday anyway 🤣 during mass), so I can always spruce my chair up with flowers.

One of the big factors for us is getting me through the day without a trip to A&E or an ambulance having to be called. Sounds simple really, doesn’t it? Yet it’s a very real possibility. I tire very quickly these days and my body goes downhill when that happens, so utilising my aids and working breaks into the day/sitting down frequently will be important. Having these planned in advance seems best for not running out of spoons* too quickly.

I’ve spoken to our photographer about my disabilities and he’s had experience with people with similar issues. Hes happy to listen and go off what I’m saying. If I’m doing well then fab, not feeling so hot then that’s ok too we can rejig positions. I was quite nervous about this conversation so this was a big relief that he was cool with it.

I’m ever so slightly taller than my partner which I am over the moon about as it removes all temptation to break out the heels I hung up years ago. I used to love love love a chunky wedge heel. But it’s just asking for trouble. So sensible flat shoes it is with good ankle support it is – to be honest I’d be quite happy barefoot but I think the church and the hotel wouldn’t be as thrilled. I’ll be gradually breaking these in as part of my EDS means my skin breaks super easily. It takes me months to adjust to shoes even when they’re a perfect fit without my feet bleeding.