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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Monday Magic – Inspiring Blogs for You!

Good Morning!

I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays.  So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale.  Please send me all your top tips and I will put a post together – funny tips too please!

Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house.  We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack.  Think I would be correct in saying mainly make up and bling…..she won’t be offended!  We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day.  The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes!  The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous.  I think maybe the head should have adjusted her speech….shortened it!!

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Well earned picnic at nephew’s school – featuring Grandad!

Anyway,  despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo.  But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car.  I came round on the gravel carpark floor surrounded by faces….not just those of my family!  There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!!  The school nurse was quite excited, having come to these events for years and having nothing to do.  As a fellow nurse I loved this

!

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The stunning Hornbeam Walk at the Aston Pottery

Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS.  So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you.  The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant.  This post is about living with a chronic illness as a teen.

Time for your cuppa and relaxation time with some inspiring posts! Enjoy!Monday Magic

http://alifewellred.com/embrace-the-years-with-dignity-and-beauty/

http://xofaith.com/boost-your-confidence-beyonce-edition/

http://www.fromthispointforward.com/2017/07/facing-forward-jayne.html?m=1

http://www.thepaincompanion.com/blog/dancing-through-pain-to-freedom

http://bladder-help.com/role-hormones-bladder-health/

https://itrippedoverastone.com/2017/07/07/what-my-husband-said-to-me/

https://neurodivergentrebel.com/2017/07/07/lets-talk-take-a-break/

https://picnicwithants.com/2017/07/05/floaters-and-flashers/

https://theedschronicles.com/2017/07/06/model-with-eds-uses-her-condition-to-stand-out/

 

Please remember to like posts and follow these great bloggers!

Claire x

Friday Feelings with Pain Pals Blog

I am really pleased to have been featured on The Zebra Mom regular Friday Feelings feature. Please check it out – and the rest of her great blog! Claire x

The Zebra Mom

Hey there, hi there, ho there!

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.

Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
bladder and reactive depression. You can find Claire on Twitter, Pinterest and Instagram. 
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“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was…

View original post 1,195 more words

Living with Ehlers Danlos Syndrome – film for #EDSAwarenessMonth

I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month.  Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!

“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican

Tilt table, echo, cardiology & probably #POTS..Y!

So yesterday saw me back in our local cardiology department to undergo investigations for my funny turns & faints – the symptoms of a malfunctioning nervous system, common with EDS.  I was inexplicably nervous – particularly when I think about some of the major operations I have had over the years.  Maybe it was the thought of having my symptoms induced or worrying that the tests might be negative and I might have to start convincing everyone that I’m not imagining my symptoms.

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Anyway we arrived at lunchtime, me having starved for the obligatory number of hours, and the first test was an echo ultrasound of my heart.  The first thing to establish was whether my scs would interfere with the scan as it did with the 12 lead ECG on my last visit.  I perhaps should have been more concerned about my joints as I managed to pop my shoulder out whilst lying on my side, scaring the young sonographer silly as it literally “popped”.  Not a good start before the tilt table as a sling was hung from the very same shoulder to support some of the machinery!  The ladies performing the test were most concerned about my pain and my ability to stand still for long enough – I was instructed not to be brave.  At this point we didn’t know if I would be able to keep my stimulator on or whether it would interfere with the heart trace.  Happily there was no interference, so at least I would be able to keep my leg pain under control!

The first part of the test is easy – provided lying flat isn’t an issue (I managed) – lying on the table and being monitored for about 10 minutes.  The next stage would normally be to be tilted up to standing – yes I was strapped on – and monitored for a further 20 minutes prior to GTN spray being put under the tongue, ahead of the final monitoring after the blood vessels had dilated.  So great care was taken to elevate me gently to avoid jolting my back….and within seconds my vision was going, my blood pressure dropped, my pulse jumped and I started to heave!  With this heaving apparently my BP dropped too low to measure and the student thought I was about to throw up over her.  The next thing I was aware of was being flat and being told that this was the quickest and most dramatic positive result they had ever had!  The same thing happened when I was slowly sat up 5 minutes later, so the test needed to go no further.

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Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.

I was sent home attached to a 7 day ECG monitor which I need to activate every time I have palpitations, sweats or dizzy spells and am due back to see the cardiologist on Thursday presumably to talk POTS (postural orthostotic tachycardia syndrome). This morning I woke with the headache from hell and have been so tired, and I’m also feeling slightly paranoid about when I am pressing the heart trace button on my new piece of equipment -did I really feel something??  For the next few days I will be filling in a data diary and be even more wired than usual – with electronic gadgets that is!

 

Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand.  At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets.  Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins!  See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!File 26-08-2016, 12 56 25 File 26-08-2016, 12 56 52

 

Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.

“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”

See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

Referrals, P.O.T.S & Books

Another week has flown by and here we are in the UK at May bank holiday & half term.  Where is this year going?  I have had 2 medical appointments this week and each of these have led to even more.  The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago.  Rather unfortunate as this is my “good” hip!!  The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away.  Or that could be because my hip gives way and I fall over!!
So a referral is in the post foimages (29)r an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more.  I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to?  There isn’t enough to cover them all!!  The second appointment was with the neurologist to check me out for seizures.  I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy.  But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!!  And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
Another couple of referrals and I will have stamps in my book for consultations with every body system.  Nearly a professional patient.  Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint gty_marijuana_plants_jt_120122_wblogcoming on – not sure how this will be received in the aisles of M&S.

We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook.  For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment.  539_10153914093796495_4475152326736141710_nThrough TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication.  I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community.  At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there.  Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out!  Guest reviews would be most welcome too.

We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall.  I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!