Tag: Conditions and Diseases

Posted in Archive, march 2024

The UK Government’s Violation of Disability Rights: What You Need to Know

Posted on by dystoniaandme

Disability inclusion as a human right should be universally upheld. Too often it is not. In 2017, the UN found the UK government guilty of ‘systematic and grave’ violations against the disabled community under the UN Convention on the Rights of Persons with Disabilities. The UK then government failed to attend a crucial hearing in August 2023, proividing no reason for their abscene. Disabled individuals and organizations who attended this hearing provided evidence to the UN committee of further negtive long term impacts to disbled citzens due to governmental policies and funding cuts/services.

March 18th, 2024 the UK government is expected to appear before the UN committee and demonstate the actions it has taken since 2017 to rectify these human rights violations. At the heart of these violations are the breach of three key articles: Article 19 (independent living), Article 27 (Work & Employment), and Article 28 (Adequate Standard of Living & Social Protection). t is imperative for there to be global prescence to witness this committee, so as to increase awareness on the current lack of action taken to address the violation of disabled peoples human rights in the UK and to advocate for this ongoing crisis. You will be able to watch this session virtually using the below link.

Where can I watch? https://webtv.un.org/en/asset/k1s/k1svtljvtr

What time? 2pm-3:30pm UK time

Posted in Archive, march 2024

Health’s Expiration Date: Why Accessibilty Shouldn’t Be An Afterthought

Posted on by dystoniaandme

Health is often discussed in a way that would imply it is a given untill old age. It is a mindset that is flawed and dismissive of the many factors that can impact our health at any age. It ignores genetic predispositions, accidents and injuries, age related complications, conditions that develop with unknown causes, complications caused by other illnesses e.g stokes, etc.

It is necessary for there to be a shift away from the idea that health is a given, to one where it has an expiration date. With that viewpoint in mind, I ask why does society remain as inaccessible as it currently is? The majority of us will, at some point in our lives experience a level of disability. Despite this accessibility across the board is not where it needs to be to make life equally accessible for all.

Health expires, so why does accessibility remain an afterthought?

Posted in Archive, march 2024, September

‘Traditional Employment Is A Requirement’

Posted on 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.

Posted in Archive

International Wheelchair Day 2024

Posted on 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.

Posted in Archive, November 2022

First Neurology Appointment

Posted on by dystoniaandme

The nerves leading up to today’s appointment had been doubling with each sunrise. I was dreading meeting my new neurologist. After a decade under the care of Prof Wonderful, and have met more than a handful of neurologists with severe god complexes before I wasn’t feeling very optimistic. Whilst I knew that it was ridiculous to tarnish all neurologists with the same brush, I had met multiple neuro’s from this particular hospital before who had awful bedside manners. Previously they had refused to take me on as patient as they had deemed me too complicated at my first appointment. The second time they met me my symptoms were brushed under the rug with a quick “ah it’s most likely a side effect of your Ehlers Danlos” but didn’t run any tests to back this up. So I was hesitant to say the least, and that I would once again be swept under the rug.

The appointment had come rather suddenly as an opening slot had become available via their virtual neurology clinic. Whilst it meant that I still wouldn’t get my botox, it would at least mean that my foot would be in the door, my name on their patient list, which feels like a positive step forwards after several months of floating around in the neurology space waiting to be allocated to a hospital.

I was pleasantly surprised by the neurologist who met with me. He was open about his retirement plans and understood my wishes for continuity of care due to the complex nature of my health. It was agreed that I would be assigned to a different neurologist, whose specialism was Dystonia, he reassured me he would book me into the botox clinic as soon a space became available. I had expected there to be an issue when I brought up the frequency of my injections (6 weekly) as this is quite a small gap between treatments than what most prescribe. His understanding of the matter was not one I’d been met with before. Normally I have to really battle to get my Drs to understand that this treatment regime was one created out of necessity to keep me out of the hospital due to the severity of my Oromandibular Dystonia.

We had had a brief chat over where we felt my treatment needed to be going moving forwards as whilst the majority of my body is fairly well controlled my jaw is feeling much like a losing battle. I still have a lot of baby teeth as I don’t have the adult teeth for them in my mouth, which at almost 30 I’m pretty happy their still in place! However several are now painful and wobbly due to the battering they have received from my tremors, spasms, and dislocations. We know from previous experiences there is no point in wiring the jaw shut as the spasms are strong enough to break the wires, but further intervention in some form is needed. We briefly discussed today playing around further with the EMG machine to see if that can pinpoint better the areas needed to be injected and some surgeries we can try. These though will obviously be needed to be discussed again in greater detail face to-face.

Overall it was a very positive appointment. I’m still devastated not to be under my old neurologist, he really helped me not only accept my conditions but also reign myself back in when I needed it. He helped me to adapt to my new life and for that, I will be forever grateful.

Posted in Archive, march 2022

Reflecting on Side Effects

Posted on by dystoniaandme

I’ve not had to resort to Lorazapam this week for managing my jaw spasms/dislocations (yet). So far my usual meds and my Dr ordered bandage support, are doing the job along with Damon relocating it when needed. I hadn’t realised just how much the Lorazapam had been affecting me until it started to work its way out my system.

Now this isn’t a surprise. Clonzepam and Diazepam are listed as allergies for me as they cause psychotic reactions when I take them. It seem to be a family of meds I don’t get along with but unfortunately need at some point now and then unless we find a better alternative to turn to. This time it was like someone had extinguished all hope. Even though my Dystonia is well controlled these days, the fact that my Ehlers-Danlos is getting worse seemed unmanageable. Crushing. Uncontrollable.

Now that it’s out of my system I can see how much of an affect it was having. Yes my EDS is on a downwards spiral at the moment, but we’re adapting and I am blessed with a supportive Fiancé and family who are helping me. My life is very much one full of hope and love. It’s helpful that I have my blog to turn to read to myself on bad days.

Botox is on Friday which I’m much looking forward to. I cannot wait to take these bandages off.

Posted in Archive, January 2022, September

Day to Day Management

Posted on by dystoniaandme

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

Prolapse, Painsomnia & Filters

Posted on by dystoniaandme

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)

Posted in Archive, November 2021

Learning To Cope With A Prolapse

Posted on by dystoniaandme

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

Covid-19 has arrived in our household

Posted on by dystoniaandme

Toward the end of last week our youngest woke with a fever. She didn’t have a cough, a runny nose or anything that particular screamed that it could be Covid-19, nor were we aware of anyone that we had seen recently who had developed it. So we were not particularly worried. However we arranged for her to have a PCR test as govt guidelines list a temperature as one of the signs to watch for. We didn’t expect a positive result, thinking instead it was far more likely to be a normal cold. After all the kids seem to have colds constantly. Less than 24 hours later at 1am in the morning my phone buzzed to let us know we needed to isolate. She had covid.

We tried our best to keep the anxiety at bay. Both myself and my partner are fully vaccinated, having received our vaccines at the start of the year. Yet after shielding for so long, and reading up on the virus over the past 18 months on the many different issues it can cause, it was hard not to worry. Both my son and I were shielders. Stefan, tested positive two days later. Whilst he has been undeniably feeling rotten and suffered more than Evie, he has luckily coped far better than we expected and is now seeming more like his cheeky self again.

We thought that we may have escaped catching it. Almost a week went by and then Damon tested positive. I was already isolating away from the rest of my household to try and avoid catching it as I had developed sinusitis which my body was already struggling to cope with. At my partners suggestions I was feeling worse rather than improving on my antibiotics I took a lateral flow test. The test result line appeared in less than twenty seconds. So off we went for a PCR again, which soon confirmed what we all ready knew.

This extremely short blog has taken me nine hours to write – ridicules I know. The fatigue I am experiencing is unreal I keep falling asleep while writing it despite being sat up with laptop on me. My body is not happy with a mirad of symptoms between dislocations, nerve pain, fatigue, spasms, no smell and taste, itchiness all over, breathlessness and spams on the left side of face which feels is as if it is determined to detach itself from my skull and be on its’ merry way.

My apologies for not getting round to live on facebook today. I needed to sleep. Hopefully tomorrow if I am feeling up for it I will do but it will depend on how I’m feeling.