Tag: spoonie

Posted in Archive, July 2024

12 years of Dystonia

Posted on 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.

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 Archive, March 2023

Check Engine Light

Posted on by dystoniaandme

It’s been a bit of a rollercoaster of emotions these last few weeks. That’s to be expected I suppose. Gastroparesis and its impact on my Dystonia and other conditions has been yet another life pausing event. Another painful event. Another force outside my control. There’s been a lot of tears in frustration, upset, anger and confusion at just how to manage this new hurdle. I don’t doubt that I can and will adapt. It’s the grief cycle again.

It’s got to the point where the doctors have finally agreed to have the district nurses come to my home three times a day to administer antisickness injections. These are the only antiemetics that I have found of any help. But in typical misbehaving form that my body truly excels in, this has not gone smoothly. I expected some bruising, but I’m now looking a tad black and blue, and bleeding a silly amount each time. It’s worth it to be able to keep my Dystonia and heart medication down though.

I’ve found the pain from the Gastroparesis, on top of my Dystonia has left me exhausted physically and emotionally.I do my best every day. Some days my best may look like nothing. I like to call that energy saving mode. I’m in that mode a lot lately as I’m acknowledging what my body needs. This is hard. Sounds silly I know. But life doesn’t exist for us to function this way. It’s geared up so that the expectation is you fall down, you brush yourself off and carry on. I need to stay down a bit longer.

The best way to describe what I’m trying to say is this. You wouldn’t set out on a long trip with a car that had a check engine light flashing, four flats, a drop of petrol and no oil. You wouldn’t get anywhere, you’d destroy your car. My body is the same thing, it’s out of fuel, every light is flashing and tires are shredded. I need to spend some time working out how to patch me up and that’s ok. It’s allowed. It’s important to remind ourselves of that in a world that is fast paced.

Posted in Archive, January 2018

Overwhelmed But That’s Okay

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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.

Posted in Archive, November 2022

Return to the Hospital

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Well I’m back. In the hospital that is. After a short escape and my catheter spectacularly failing I was instructed back to return to the hospital. I was ushered back to the ward and greeted by baymates from the previous day. The nursing staff quickly whipped out the original catheter and placed a larger one in.

Whilst the original one was by no means pleasant, I’d got through the insertion with barely a grimace having been used to catheterising myself daily anyway. This second one was something else. It took several painful attempts to insert, immediately I found myself experiencing a burning sensation that left me in tears and trying not to move so as not to aggravate the sensation. The staff reassured me it should pass.

This morning, after no sleep thanks to pain, the consultant ordered medicine to ease the bladder spasms, assured me it would help and then I’d be discharged. It took 12 hours for the medicine to come to the ward, I’ve only just been given it. I have spent the day begging for relief. The bladder spasms I could deal with, the bypass round the catheter I could deal with, the burning sensation in the urethera? That I couldn’t cope with. The searing relentless sensation frankly overwhelming. After a day being inconsolable the nurses removed it. The relief was immediate. I’ve no idea why it happened when the first one was ok. They are now monitoring to make sure I don’t go back into retention and can cope with intermittent catheterising in the meantime.

The indwelling catheter was meant to be a solution until they could do the op to fit the suprapubic catheter. Hopefully I’ll be able to manage without it until then.

Diagram of Suprapubic catheter
Posted in Archive, November 2022

Fridays Ambulance Call Out

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As the early light of Friday morning broke through the damp cover of night I lay in bed counting the minutes until my Drs practice opened. The pain in my lower back had been agony all night and I suspected my ongoing UTI had progressed. After a night of no sleep 8am couldn’t arrive quick enough.

By the time I arrived at my doctor’s for my 11am appointment my temp had hit 40.3c and I was in urinary retention, my heart rate and blood pressure were through the roof. I can vaguely remember being encouraged out of my wheelchair chair and onto the bed whilst they phoned an ambulance. Shivering with fever chills, and desperately tired. Three hours later I was in the back of an ambulance on my way to the hospital.

I don’t think I’ve ever seen A&E so busy. The staff were amazing and after quickly establishing my veins were playing hide and collapse they had an ultrasound out to guide them. They hooked me straight up to antibiotics for an upper kidney infection and told me urology would make me a plan.

Waiting for ward rounds

Saturday morning three burly Urology consultants appeared at the end of my bed. “What would you like us to do?” The question caught me offguard. I’m rather used to staying quiet and listening so as not insult god complexes, or putting my thoughts across in a tonned down manner. When I explained I’d be happy to be guided by them, it was really refreshing as they took the moment to explain my options. I could that day under local anesthesia have a suprapubic catheter put in: this would involve a small incision in the tummy allowing them to put the catheter through and to the bladder. Alternatively I could have an indwelling urethera catheter and go home, to come back at a later to have the suprapubic catheter put in under a general. I chose the latter option giving them a brief explanation about my Ehlers-Danlos and how due to EDS you can pump me full of local but I’ll still feel everything. They happily accepted my decision .

Back in 2019 whilst pregnant with my daughter I’d agreed to surgery where they attempted to remove a large suspicious mole from my breast without pain relief or sedation due to the pregnancy. The local failed. I felt every cut. The team did their best to distract me but the whole thing was traumatic. I made the decision at the time to not put myself back in that situation ever again. So even though the suprapubic catheter is meant to be better long term I’m happy to wait a few extra days/weeks for it if it means they can put me under.

So why has this all happened? My guess is that it’s down to the Ehlers-Danlos. My bladder has been dodgy for well over a decade, it’s just recently sped up in its decline. I’m feeling a little emotionally up and down, frustrated mainly but I think it’s healthy to acknowledge that. I know this will all feel normal soon.

*On a side note if you use catheters and have any tips on making it more comfortable please get in touch!

Posted in Archive, November 2022

Motherhood and Pacing

Posted on by dystoniaandme

Being a mum is without a doubt one of the best, and most challenging, joys in my life. Whilst there is an element of predictability, there is also the beauty of their ever growing imagination. We never quite know what they will ask next or what game they’ll invent. It really is a blessing. Hearing my youngest call out in her sleep the other night “Sing for your treasure pirates!” is a memory I will treasure with a chuckle.

Last week my son and I found ourselves in the local children’s ward again. Luckily this time our stay was short. He had clung to me like a young monkey. The way children do when they’re feeling awful. He’s five now, and as much as I love holding him, especially as he’s usually so full of beans and always on the go, 13 hours like that took a physical toll. I knew better, but when our children are ill pacing goes out the window. It’s a week on and I’m only just starting to feel myself again.

We had found ourselves in hospital without much warning having been sent straight there by the GP. Normally I go armed with extra clothes, extra meds, books, etc. This time I just had my handbag. I will now always carry an extra day’s worth of meds with me.In the days after his discharge the fatigue was at levels it hasn’t been for awhile. My partner found me taking a break whilst getting ready for church on Sunday morning. I felt ridiculous but at the same time knew I needed to listen to my body

It’s a new balance I’m needing to learn to walk. In reflection I can see ways I could have helped limit the physical impact. For example I could have explained my conditions and asked if I could have had a small blanket to fold up to cushion behind my back where it was spasming etc. Hopefully this will help a tad next time.

You’ll be glad to know that although still on antibiotics my eldest is back to his bouncing about cheeky self.

Posted in Archive, November 2022

First Neurology Appointment

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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, July, July 2022

Urology Pick Me Up

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Yesterday I attended my first appointment with my urology consultant. I had no idea what to expect. Urology issues are common in my family but I’ve never pushed to have my issues investigated. I had a scan once in 2012 and was told oh it’s just an overactive bladder just try to go to the loo less and you’ll be fine. I was training to be a midwife, I was queen of going to the loo less.

I hadn’t realised just how nervous I was. I’ve been coping with on/off incontinence issues for a longtime now, it can take me twenty minutes to void my bladder and it’s never fully empty. Throw in my prolapse on top and things are just not great in the pelvic region. When he asked me to explain what was wrong the words just tumbled out at top speed, I was vaguely aware of my hands nervously shaking. He stopped me a few times, got me to take a breath, reassured me there was no rush he had time to listen to me and that I could explain in as much detail as I could.

He was eccentric in his mannerisms, but put me completely at ease. After my neuro left this was the pick me up I needed. Before I left his clinic I had appointments in my hand to come back for further testing, instructions for at home testing and a date to review the results. The NHS at its finest.

Posted in Archive, June 2022

Neurological Comfort Blanket

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*Professor Wonderful has been my neurologist for a little over a decade. When I first became ill at 19 my symptoms broke me. I went from being a confident but accident prone 19 year old, who loved every second of her degree to a spasming, wheelchair bound young adult whose carefully planned out career was slipping through her misshapen fingers. The day my mum collected me from uni I cried the whole way home. I was on sick leave but I knew I wasn’t coming back. There was a twisting pit in my stomach that knew it.

Over the next few months we would clasp at every hope offered that I would get better. Meanwhile I continued to deteriorate. Every road we took was slightly different but each one mentioned Prof Wonderful name as the expert in my symptoms. My mum being the force of love that she is found his contact details and emailed. A few weeks later we sat in his office.

After months of seeing consultant after consultant, each previous appointment more crushing than the last I didn’t want to get my hopes up. I was used to being told I could stop my eyes from spasming if I wanted to, being told by multiple consultants that my symptoms were the result of the abuse I’d gone through in my teens, or being left with the results failed operations (a mouthful of broken wires ) with the spasms broke the wires being used to try to control and he ghosted me rather than fix the mess. My expectations were low. Yet my preconceived judgement vanished when he shook my hand and immediately noticed my hypermobility, he referred me to a specialist that day which resulted in my EDS diagnosis. I can remember crying in the lift after the appointment. They were tears of hope.

He did so much more than provide injections. He listened. When I got ahead of myself when my symptoms improved and thought I could go back to midwifery he gently disagreed. He was right. When I’ve needed my team’s to communicate he has fought to ensure they all do to help ensure I’m getting the right care. When he left his post at the hospital I was first under him at I was reassigned to a different consultant. He refused to give me injections at my usual frequency or dose. I went downhill fast, so contacted my original neuro who immediately had me transferred back to his care.

When he informed me on Tuesday he was leaving and no longer would have a patient facing role it was all I could do not to be cry like the last time. I knew it would happen one day. I’d just hoped it would be a long way off. After all these years he is essentially a comfort blanket of sorts, a safe place amongst the god complexes and arrogance that I’ve come against time and time again. I’m nervous about this new chapter. Here we go.