Movement disorder – Dystonia and Me

A teal background with sporadic white and blue dots, A white simple house outline with the words Accessible Housing across it in teal. Below in pale green are the words 'The lack of accessible properties in the UK is a growing issue'

Archive, February 2024

Accessible Housing In the UK

Posted on February 27, 2024February 27, 2024 by dystoniaandme

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.

Archive, October 2023

Just Married

Posted on October 30, 2023 by dystoniaandme

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

Archive, May 23

Patience: Can you lend me some?

Posted on May 3, 2023May 3, 2023 by dystoniaandme

Patience Can You Lend Me Some

Poetry isn’t my typical style. Even in my job as an author I write children’s books and YA fantasy fiction. However putting pen to paper and writing whatever comes out is how I deal best with my emotions.

I wrote this last night while in the bath. I’ve been struggling with nerve issues recently along with another round of optic neuritis that has drastically impacted my sight. This is the unedited raw poem that came from the turmoil. It may not be the best but it’s the best representation I have of me right now. I know others will understand.

Archive, November 2022

Declining Health

Posted on November 15, 2022 by dystoniaandme

“It’s your choice. Do you want to keep trying to cope with the pain at home, or I can send you up to the hospital?” I sat opposite my doctor, wanting to explode. Not at them. My doctor has gone all out over the last month trying to help me. I’m on week four/five of an infection which has in turn irritated my usual spasms, my pelvic prolapse which has been a problem for 3 years (and I’m still waiting to see the specialist) is causing its own issues, and I now have to self-catheterize daily. Hospital admission is tempting, but the local hospital isn’t that great with rare conditions, and someone needs to be here for the kids. I decided to remain home, where I know my meds wouldn’t be messed with and I could use heat therapy and a TENS machine too.

Week four going into week five of antibiotics

It’s something that I’m struggling with quite a lot at the moment, the sensation that my body is deteriorating at a rapid rate again. It goes through phases of this, its part and parcel of having multiple chronic conditions. Knowing that doesn’t make it any easier though. I recently made the decision to start having therapy again; struggling to accept new declines in my health is something I’m making sure to discuss.

My decline in health at the moment is mainly due to my Ehlers-Danlos, however my Dystonia is impacting this too. Ever tried using a catheter with hands that tremor? It’s by no means easy! I’ve not got a Botox date yet with the new hospital but I’m hoping they maybe willing to try injecting my hands so as to make this whole process a bit easier.

Archive, November 2022

First Neurology Appointment

Posted on November 1, 2022 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.

Archive, September 2021

Covid-19 has arrived in our household

Posted on September 5, 2021 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.

March 2021

Medication Success

Posted on March 28, 2021 by dystoniaandme

As I have mentioned previously following a discussion with my neurologist I tried a couple of different medications to see if we could get a better handle on my spasms. In particular the spasms around my jaw as these cause me significant issues with pain, dislocations, and make it next to impossible some days to relocate my jaw; I’ve had the joy previously of coming round from an operation to have my jaw relocated under GA, only to dislocate when I wake up due to spasms, and have my surgeon coming running over to put it back in and bandage my jaw up. Not a pleasant experience.

Trihexyphenidyl is the medication we have added into my daily regime and it has made a huge difference. Little things like I can brush my teeth now with an adult sized toothbrush rather than a children’s one are possible, and instead of dislocating my jaw by brushing my teeth, my jaw is just in a small spasm and achy. My son commented the other day on the fact that my face isn’t wonky all the time and asked if my Jaw Dr had fixed my jaw. We had a quick chat about mummy’s silly brain and moved on, but for me that showed just how amazing this medicine has been.

I saw my neurologist the other week and he has suggested increasing the dosage further as I am currently not experiencing any side effects. I’m waiting to receive a copy of his letter to my gp explaining that I have the go ahead to do this at my own pace, so we can see just what improvements we can get.

Right now, thanks to lovely female hormones, I’m sitting here feeling quite sore all over as my body goes downhill each month due to the fluctuating hormonal changes. I’ve had several subluxes today in shoulder which have in turn aggravated neck spasms. Normally I’d be quite grumpy about all of this, and yes I’m not exactly thrilled, but having the Dystonia side of things more controlled doesn’t half make coping with the EDS etc, easier. Everything just feels that little bit more manageable right now, and that’s fantastic.

Archive, March 2021

Back from Break; Update

Posted on March 17, 2021 by dystoniaandme

It’s been a few weeks since my last post, as some of you will know from my Facebook page I took time away whilst my son had a major surgery. Now things are settling again the posting schedule will be returning to normal.

So what’s been happening? My neurologist and I have been trialing different medications over the last three months to try and improve my quality of life, bring my pain levels down and reduce the number of Jaw Operations I have. We tried a number of different ones before landing on trihexyphenidyl. This medicine has been life changing. It’s drastically reduced the constant jaw spasms, and whilst they are still there the severity is reduced and manageable. We’re still playing around with the dosage to see how much further we can control my spasms. It’s been amazing.

I’m still waiting for a Barrium Swallow test to confirm my chronic Aspiration and give the dietician an idea of what thickness fluids need to be to help stop this. In the meantime the speech and language therapist is checking in regularly to ensure I’m doing ok.

Currently I’m waiting to see my Gastro Dr as my GI symptoms have returned. It’s extremely painful to eat or drink anything heavier than a cup of tea. I’m pretty much living off sugary tea in the meantime to get by.

On a more positive note I’ve just signed a three ebook deal for my young adult fantasy series which is very exciting. I feel very fortunate that this is something I can do from home while the children are asleep, as given the severity of all my conditions on my body a typical job is out of the question.

Finally I want to say thank you for the support I’ve received over the last few weeks. It’s been extremely touching. Now that this post is up and you are all caught up I’ll be back to posting my usual blogs from tomorrow.

Archive, COVID-19, february 2021

The Positive To Lockdown With Chronic Illness

Posted on February 20, 2021 by dystoniaandme

Whilst the multiple national lockdowns have come with there fair share of complications, for example cancelled treatments, the stay at home message has been a blessing in disguise for me. My body has been going through a decline/more frequent dislocations lately, which is less than an ideal. Now prepandemic I would have ignored my bodies pain signals, and ploughed through the day. A bad cycle, and habit that I had formed. Only collapsing in the evening, spoonless, in pain and annoyed at myself. Lockdown has relieved the social pressure to attended multiple groups a week, and be on the go all the time. For my particular lot of chronic illnesses it’s meant I have rested when I have needed to. I’ve had the opportunity to relearn my bodies distress signals.

Now don’t get me wrong, I’m not literally doing the above meme, though it has its appeals. But it has removed the guilt I felt on slow mornings when we watched a Disney film and had a slow start to the day, rather than rushing about. I still finish the day with no spoons. That is just life with chronic illnesses. However I rarely exhaust myself to the point that I have impacted the next day, which prelockdown was a frequent occurance.

Post-lockdown this is something I need to remember; that it is perfectly fine to acknowledge if my body is saying no not today. We can watch films, craft and bake in the house instead and have a lovely day. Just being kind to my body more often will allow more days out and in the long run that’s what works.