Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘spoonie’

Zebra or a Horse?

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.

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“Pull Yourself Together!”

This week on my personal social media profile I posted a status sharing a positive experience with my new GP. In typical EDS fashion, my belly button had split open along an old surgical scar, whilst my Dr tended to me he not only put me at ease but he made sure to impress on me that not only did he understand how real my symptoms were but also how debilitating they can be. He took the time to discuss my range of conditions and ask what more he could do to help. It was uplifting; naturally, I wanted to share this, as this is not how my appointments usually go.

Now I’m quite used to getting snide remarks off of able-bodied/healthy people and misinformed Doctors who don’t know any better. Over the last 6 years, I’ve learned to let their ignorance bounce off me and to use it as an opportunity to educate. However this week when I posted about my positive trip to the doctors, a fellow member of the spoonie community made a comment which blew me away “pull yourself together, you have got a family to take care of“. Wow.  There were a few choice words I still wish I had responded with, but instead that ‘friend’ was removed. Whilst I know that I don’t need to address what was said, here are just a few toned down thoughts.

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I live with spasms, agonizing subluxations, and dislocations 24/7, and it’s now suspected that I have gastroparesis.  My list of diagnosis builds each year. To me none of that matters; I am a great mum despite my health. I take care of my family and they take care of me. Go eat some chocolate, it will release a bunch of endorphins, and think about why you felt the need to try and shame me for being ill whilst having a family.

26 hours Dislocated

Late Tuesday afternoon whilst curled up on the sofa nattering away to my partner my jaw dislocated. It wasn’t a surprise. It had felt off all day, with pain radiating around the area, and visibly subluxing often so I had stuck to soft foods all day. Being me though I hadn’t considered that talking a bit less might help. I rather excel at talking. It’s quite unusual for me to not to be able to relocate my own jaw but I decided that I’d try and sleep on it and if it was still bad in the morning I’d get checked over. I can almost hear you shaking your head at me, in hindsight I agree that was a silly decision.

So yesterday morning I took myself off to the Walk-In centre where after a quick (and right) lecture on dislocated jaws being an emergency I was whisked off to my local hospital. It was my first time visiting the A&E up here since I’ve moved and I was a tad nervous. But the staff were wonderful. They were rushed off their feet, but they were so kind, it was a breath of fresh air in comparison to what I am used to.

X-rays confirmed that the right side of my jaw was fully dislocated. After using a rather unbelievable amount of tongue depressors failed to relocate it, it was decided to take me round to the resus unit where I could be sedated and they could try and manually relocate it for me. They were so full of confidence, to the point I too was full of confidence, I happily offered them my arm whilst they pushed the sedative through, I can remember giggling as it kicked in…and then I can just remember the pressure as they tried to manipulate it. Two different doctors tried three times. I screamed. My jaw failed to relocate. They were lovely though. At this point the decision was made to phone for an ambulance to take me to a different hospital to see the specialists there.

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Sedated post failed relocation attempt

When the consultant walked through the door I could have broken down; and to be fair I did about five minutes later. I’d seen him previously about 7 years ago and the visit burns in the back of my  mind as a prime example as exactly what a doctor shouldn’t be. Upon entering the room this Dr recognised me instantly. He doesn’t believe in Dystonia. He ignored the fact I have EDS and suffer with frequent jaw dislocations. Whilst I am thankful he relocated my jaw, I cannot express how belittled, put down and worthless he made me feel. Upon leaving the hospital he advised that I start on a liquid diet but gave no further advice on time frame or inteventions in the meantime.

Out of frustration with feeling like I just didn’t know what to do to help myself this morning I went to see my GP, I am lucky to have a wonderful one up here. He was quiet astonished that I had been discharged from the hospital last night as you can see my jaw subluxing still and with my history its only a matter of hours/days until it fully dislocates again. So I’ve been referred to the oral surgeon and on strict orders to maintain a liquid diet until then. Dystonia and EDS are two conditions that really work against each other so here’s hoping there’s a not too drastic treatment plan in the future.

Happy 70th Birthday NHS

Today the NHS celebrates its 70th birthday, and with this milestone it is important to acknowledge what a valuable asset it is. With a government that seems to care very little about it, it is more vital than ever before that we shout from the rooftops about the wonders it performs day and night 365 days a year, and make our opinions known when it comes to ensuring that the NHS receives the funds it needs to continue you the amazing work it currently performs.

I am lucky to have experienced both sides of our NHS, as a student midwife I witnessed the strain in staff numbers and how overworked they are; as a patient I honestly doubt whether I would still be alive without them. I’ve had more ambulance trips than I care to count, and spent many months over the years being cared for as an inpatient. Without my neurologist I know that I would have little quality of life; I would not be able to eat, drink, talk, see, or move my limbs. He enables me to live a life that is fulfilling.

To the NHS I say thank you. Without you many lives would be extinguished, and many more would be experiencing incredible suffering. Thank-you for doing your all every day and night all year long. Thank-you for continuing to provide outstanding care despite your own government failing to supply you adequately. Thank-you.

 

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What Next?

Three years ago I announced to you all that I was off to Oxford Brookes University to commence my studies in BA Publishing Media. It was an unexpected decision.  I had attended an open day as a prospective student with the mindset of applying for the 2016 intake; a chat with one of the lecturers about my writing and editing experience and I had a place for the 2015 intake. It was out of the blue, a whirlwind of excitement and fear, yet exactly what I needed.

The past three years have been full of highs and lows. I’ve had multiple conditions diagnosed and added to my ever growing list, I spent the better part of my second year studying from my hospital bed, my debut novel was published in the middle of my studies, and whilst in my third year my wonderful son accompanied me to the majority of my lectures. I had the support of the uni through every moment, they celebrated my successes and they raised me up in my lowest moments. I can’t quite wrap my head around the fact that it has now come to a close.

Yesterday, 19th June 2018, I graduated with a 2:1 with honours in BA Publishing Media. Receiving my degree was a moment that at many points over the last three years I doubted very much that I would ever reach. Yet I did it. I conquered every challenge thrown my way.

So what’s next for me? Well my first children’s book, Cheeky Dragons, is currently in the editing process after being signed to Nightingale, I’m working on the prequel and Sequel to Regan Snatcher of Souls, and finally several months ago I opened my own publishing house Little Goblin’s Books focusing on children’s picture books and young adult titles. My company, and my writing projects are keeping me busy and I’m thoroughly enjoying  them. The idea of pursuing my Masters’ degree in Publishing is one that very much appeals to me, but for now a little break from essays is very much welcome.

 

New Beginnings

At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.

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Happy in our new home

Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.

I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.

February Update

I’m truly ashamed of how long it’s been since I last posted on here, that one blog post a week goal went out the window! But I’m still here ticking along desperately trying to find a moment in the day to sit down and share with you all where I’m at. The joy of being in my final 9 weeks of university, along with having a 9 month old baby & another book to write however means I really don’t seem to have enough hours in the day anymore and unfortunately regular updates have had to be postponed. I do intended to get back to a weekly format asap.

So what’s going on with me?

My Dystonia alien is being regularly forced into submission thanks to good old Dysport injections. I’m currently exploring how different exercises can be used to help in the management of the condition so please feel free to contact me with any articles you recommend or if you want to share what’s worked for you.

My optic neuritis has finally improved and I am waiting to see my lovely neurologist in April to discuss the results of a new MRI and Evoked Visual Potential tests. I’m hoping for the usual “nothing obvious to see, but we expect that with Dystonia” response.

My Tourette’s like symptoms have been slightly more prominent lately and I would love to hear from any spoonies with this/symptoms similar to this. The word ‘lemons’ escapes me far more often than I care for in a day and whilst this is manageable I’d still like to hear from others about any ways of calming it. Naturally this will be another little chat with the neurologist in april.

I’d like to take a quick moment to thank the many people who emailed me their thoughts/prayers etc after I shared my diagnosis of postnatal depression the other month. My PND I feel was the result of extremely poor and traumatic antenatal care*, after several hard months I feel like I am turning a corner. I cannot express enough how much hearing from so many of you who wished to share with me how you navigated PND helped me to feel less alone during a time where my emotions and anxiety where crippling me. Thank-you.

*Some elements of my antenatal care were perfectly fine however overall without going into detail it was a traumatic experience which need not of been so. Complaints were logged with the trust at the time.

Here we go again

I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.

Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.

So here we go again. Distraction techniques in full swing and disney soundtrack blasting.

Body Meet Osteoarthritis

This week I found myself sitting in the preop clinic of a knee replacement clinic. On my arrival it didn’t take long to piece together where I was, and even less time to start panicking as to why I was there considering I was expecting to see the Orthotic department not the surgical team.

The Dr I’d been assigned was lovely and surprisingly familiar with the majority of my conditions. I was pleasantly taken aback to discover that they had scheduled all the xrays and scans into the appointment time slot, so I was carted off down to X Ray where my knees, hips and ankles were x-rayed from multiple angles (so far I’ve just had the results for my knees). Having these pictures taken took quite awhile as trying to get my knees and and toes all pointing in the right direction is a rather impossible task. I got the impression the radiographers were not used to my host of conditions as my uncompromising feet proved quite the problem, and by manipulating them into a forewards position my knees subluxed!

So far the x-rays have revealed that I have Osteoarthritis in my knees and that really I need new knees, however due to my EDS that surgery is extremely unlikely to provide any long term relief so my surgeon wants to delay it for as long as possible. So for now the plan is to try to shift as much weight as I can to ease the pressure on my joints and delay the surgery. Whilst the diagnosis is disappointing it explains the pain I’ve been in for the last few years. I’m just keeping my finger crossed the x-rays won’t show it in my hips and ankles too.

Before I sign off, Spoonies it’s cold outside! Please if you find you are affected by the cold spend that extra spoon wrapping up warm or having a longer bath. Practice self care. This time of year can be hard, I know I’m suffering, so be kind to yourselves.

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Fiery Fury of Flare UPs

Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.

I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.

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It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.

This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain.  All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.

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