Category: September

Posted in Archive, march 2024, September

Look Beyond The Wheelchair

Posted on by dystoniaandme

The wheelchair often becomes the point of attention when people first meet me. I often get met with “What happened to you?” or “But you’re so young!”. Questions that are meant with no malice I know. Society has ingrained in many the perception that the wheelchair is one of the defining symbols of disability. However, if we were to literally remove my wheelchair from the picture, would you still be able to perceive any indicators of my disability?

Rebecca, a white woman with her hair tied up, gazes off to the side in a black and white snapshot.

When we remove my wheelchair rather literally from the picture, it becomes almost imposibile to recogize any of my conditions. Their lack of visibility does not however make them any less real. Society, as we have seen repeatedly, tends to validate only those disabilities in which it can ‘prove’ the condition/the condition is visible. This is extremely problematic as only a small percentage of the disabled population are classed as having a ‘visible disability’.

Using myself as an example, I live with organ prolapse, I’m reliant on a suprapubic catheter, I experience extreme levels of chronic pain, I have PTSD, Dyspraxia,  find too much visual stimuli brings on migraines and numerous other conditions that are not immediately obvious. These symptoms can impact  day-to-day functioning, and when combined, they can be truly debilitating. Creating a more accessible world would greatly enhance the lives of those with disabilities. This would involve not only providing wheelchair access but also increasing the availability of disabled-friendly facilities, raising awareness among retail staff about the various challenges customers may face e.g visual, auditory, sensory difficulties etc and working to create an inclusive environment of understanding and patience.

It’s vital to recognize that disability is unique to every individual and illness. It’s a sliding scale in which each person moves in accordance with their changing conditions and the factors that are impacting them that day. It’s a vast scale; we need to refrain from reducing people and their disabilities to simple tickboxs.

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 September

Fundraising for Dystonia UK

Posted on by dystoniaandme

It’s Dystonia awareness month and across social media it’s amazing to see so many people taking part. This year I decided to switch my fundraising activities up a little bit and do something different and unique.

I’ve put together a short poetry collection, Freefall Dysfunctionally Me, from which all royalties will be donated to Dystonia UK on an ongoing basis. The collection covers multiple aspects of life with Dystonia such as job loss, friendship loss, Relearning to love ones self, being a disabled mum, Government’s view on those with disabilities, medical trauma and much more. My aim was to write from my experiences and not sugar coat anything. The odd one is more upbeat, cheerful and self accepting; an accurate depiction of my rare days of self confidence.

The collection is currently available via Amazon but comes out globally in stores from the middle of the month .

https://www.amazon.co.uk/Freefall-Dysfunctionally-Me-Rebecca-McDowall/dp/B0CGYYHDWK/ref=mp_s_a_1_1?crid=3DOLCG81BAAJ3&keywords=freefall+dysfunctionally+me&qid=1694276814&sprefix=%2Caps%2C505&sr=8-1
Posted in April 2022, Archive, September

Friendship with Chronic illnesses

Posted on by dystoniaandme

Living with any chronic illness brings with it by nature a certain amount of unpredictability. For me that has meant no hour is the same from one to the next, let alone one day to the next day so forward planning always has to come with the understanding that extreme last minute cancellations are not just possible but likely especially when going through a rocky patch with symptom management. Part of pacing is actively choosing where to rest and cut back and sometimes that means staying home. A fact many healthy people forget. It results in people viewing me as unreliable/flakey/lazy and as a result many friendships have been lost over the last decade.

When I first became ill the isolation was deafening. It’s quite astounding how loud the silence is when people who you thought were your friends disappear when life gets hard. At the time I was confused and angry. Now I’m grateful, it showed me who my true friends were and ten years on I’m still very close to them and look forward to our reunions.

Recently I’ve gone through another bad spell. I’ve been able to do less than previously, I’ve cancelled multiple plans last minute despite my best efforts. But between my general chronic illness and complications caused by new issues my daily activity tolerance /spoons has been appalling. Basic activity wipes me out. Now this would have been devastating to me previously but now I’m just proud I’m listening to my body and learning where to cut back. I’m not going to lie it’s still upsetting losing friends but it’s not having the impact that it once would have had. I’m grateful to the community of online friends with chronic illnesses I’ve built rapport with whose understanding is everything.

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 September

What Can I Do For YouToday?

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What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.

I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.

In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.

Stock photo of pillbox

Posted in Archive, march 2020, September

Isolation Week 2

Posted on by dystoniaandme

Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.

We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.

It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.

I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.

I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.

Stay inside. Stay Safe. Support our NHS.

Posted in July 2019, September

New Prime Minister New Fears

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With every general election, and with every leadership contest, we get new a new prime minister. A new figure, each with their own agenda and view. When it comes to politics, my number one concern has always been for the potential impact that the candidate and party will have on the NHS. Many laughed when America elected Trump to the presidency and in my eyes I worry that the conservative party may have just followed suit.

During President Trump’s recent visit to the UK he stated that everything was on the table for a deal – including our NHS! Whilst Theresa May later retracted his statement, it is clear where Trumps eyes are focused for trade and both he and Boris Johnson made it publicly known that they are on good terms. Is Boris as brazen as to go as far as ignoring May’s stance and instead pursuing a US/UK trade deal which involves the NHS to a degree? Who knows but I for one wouldn’t be surprised.

So why such concern? As with any service, the NHS has its issues which is to be expected when it is incredibly underfunded and overstretched, however the NHS is a complete blessing. Without our NHS I could not afford my treatment: regular injections and medications allow me to eat, drink, swallow, see and communicate with others verbally. It is literally life changing. For many, such as myself, the possibility that the NHS could be impacted is a terrifying prospect.

Posted in Archive, November 2018, September

Zebra or a Horse?

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When you hear hoofbeats its’ time to take pause,
Remember your training it’s not a Zebra but a Horse,
Go on throw diagnostic criteria’s out the door,
Something much simpler is bound to be the cause.

Patient not quite fitting those tick boxes on the chart?
Have you ensured you’ve torn their mental health apart?
Depression, trauma, maybe be a life stressor or two,
Cancel their painkillers and make sure to push through,
A psychiatrist referral to review them a new.

Yet your patient sits there and loudly declares,
“I’m a Zebra, I’m striped and Lord knows I’m rare,
I’m dislocated, spasming, and bruised black and blue,
Please don’t be yet another Dr that lets me fall through”.

You can stop my medication and hang me out to dry,
Or perhaps just this once you could choose not to turn a blind eye,
My connective tissue is failing and my body’s been wrung through,
My brain sends faulty signals, and I don’t know what to do,

Dystonia, EDS, CRPS, I all but shout,
Should your really ignore the fact my joints are hanging out?
Or what about the psych assessment that states beyond a doubt,
‘Her issues are organic you should promptly check them out’.

It’s become clear that your training needs a change of course
Try “When you hear hoofbeats it could be a Zebra or a Horse”.

Authored by R. McDowall, 2018.

Related image

Posted in September

Mind, Heart, Body…

Posted on by dystoniaandme

Midwifery. One word that for me will always be bitter sweet. My dreams and aspirations 6 years on are still pinned tightly to it. It’s one of the reasons I struggle with having good spells with my conditions, which I know sounds ridiculous. Whenever I’m going through a particularly well controlled phase there’s a voice in the back of my mind that starts questioning whether now’s the time to start an HE access to Midwifery course so that once my son is in school I can apply to return. It’s a cruel mindset that I seem unable to shift.

I know my reality. I know that my good spells don’t last. That eventually as my injections wear off I will be wracked with spasms once again. I am accuately aware that due to my EDS my joints will continue to deteriorate; I’m 25 and already have been told I need a double knee replacement. If I examine what a good period means to me, you would probably laugh; a good spell still involves dislocating at least one or more body parts a day, it still involves high levels of pain, it still involves spasms to varying degrees. I know this. Yet as I lie in bed trying to catch up on some rest whilst my son naps I find myself reading the latest Royal College of Midwives articles because I daren’t risk falling behind on the latest developments in Midwifery just incase in time I go back.

My head knows that I should accept all this, my heart longs for my return to working on the wards, and my body is like an ice sculpture that has been left in the sun and is starting to melt and crack.