Medical professional to Professional Patient

In under ten short years I have found myself well and truly stepping out of one uniform and into another.  I didn’t see it coming, I really didn’t.  But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!

Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! File_000 (45) These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!

 

 

A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently.  As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic.  In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface.  Of course all that time I was nurturing my own genetic illness slowly but surely.  It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture.  But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.

My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP!  With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising.  No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in!  My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me!  Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!

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The Student Engineer – photo taken by Dan McKenzie

Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age.  I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips.  We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well.  Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations.  The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.

There you have it – in the space of a few years going from medical professional to professional patient!  As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life.  Funny, but the endocrinologist said something similar to me about living life the best I can.

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My lovely girl on her way out to live…..

 

Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!!  But it may well have made no difference.

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What a difference a decade makes! All dressed up – my last night out before the latest rounds of surgery and hospital visits! The whole family – with my parents and brother.

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10 thoughts on “Medical professional to Professional Patient

  1. You have an amazing outlook. I’d love to think that I would handle such issues with similar grace. I’d also love to think that my doctors’ primary advice would be to get out there and live.
    Nice writing and beautiful family!

    Liked by 1 person

  2. First off, I can only imagine how hard the transition was for you – my late father and my mother both retired from careers in medicine, and the hardest transition for my father was not retirement, but later being diagnosed with the cancer that ultimately took his life several years later. Second, I know you don’t have much choice but to suck it up and deal, but brava to you for doing just that – MUCH better and healthier, both for you and your family, than throwing a nonstop pity party (tempting though I know that is at times). And third, you are soooooo lucky to at least have a diagnosis, even if it only means knowledge vs. a treatment or cure. My body has literally been falling apart my whole life – several joints in different parts of my body at decade intervals (I was ready for my first knee replacement at 25, and two decades later am still trying to put it off for as long as possible for the same reasons as you), and more recently a “freak accident” broken-bone-per-year that has made it extremely difficult to carry on with my normal activities, in part because each fracture takes longer than it should to heal. (I’m now on 11.5 weeks since breaking my right foot, which means spending my kids’ entire summer break stuck inside with them vs. driving them to parks, swimming, etc. – not allowed to put any weight on it while it heals.) Once I’m recovered from this latest incident, I’m hoping to try again to get some answers, too (rheumatologist will be my next stop), so hearing that you at least have gotten answers gives ME some hope that I might reach that point someday, too! 🙂

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    • Thanks so much for taking the time to read – and for sharing your own story back! I explained to a young girl at a support group that she is lucky that there is a diagnosis for our condition these days, for the same reasons that you say…..I am certain that my mum has it and my grandmother before her, but no one had ever heard of it. I think that one of the hardest parts has been not being able to carry on with the kids as I would have liked – I haven’t sat on a plane in years and can no longer drive. The eldest had just started secondary school when the 2007 pic was taken, my first spinal fusion was done on the middle one’s 11th birthday, and the second fusion was done when the youngest had just started secondary school & the eldest was applying to Cambridge! They all have grown up pretty independent though which is an upside! Hang on in there and keep in touch x

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  3. It’s hard to know what to say. I can tell it’s not sympathy you want. You are very positive and I would like to think I would be able to stay as positive if life threw me such a curve ball. We should all get out and live life to the full because who knows what’s around the corner! Fascinating story and what a beautiful family you have!

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