Monday Magic – Inspiring Blogs for You!

Black Friday has gone…although I suspect it will roll into the pre Christmas sales, my friends in the US have celebrated Thanksgiving and in our household we have celebrated my nephew’s 7th birhtday…and on St Andrew’s Day will celebrate my brothers’s birthday (no age, he might be reading!).  This must mean we are really starting the count down to Christmas!

I have been party to several inspirational moments this week – no, not making the Ghostbusters birthday cake although I think it was pretty good considering the ongoing struggle to keep my shoulder in socket!  The first was a visit to see the film Unrest, made by Jennifer Brea about living with ME/CFS at a local theatre with my mum.  I’m not going to say much about the film here as I will write a review – but Jen introduced us to some really inspiring people across the globe, and then mum and I met some lovely people in the foyer after.  Naturally they assumed that I have ME, and I explained what I do have (EDS, POTS) and how there are many overlaps.  I was delighted to meet one gentleman who was there alone, but has a daughter with a new tentative diagnosis for hypermobility syndrome and possibly POTS.  He took my details, the blog, and information for EDS UK and I really hope that his daughter will get in touch.

As Chair of the KGS Friends, I am often invited to events at my old school and this week Duncan and I attended the senior school production.  We had no idea what to expect and I was slightly nervous when I realised that my wheelchair spot was virtually on the stage – if I had released the brakes I would have taken out a bale of hay and been centre stage.  But we need not have worried about having to applaud politely…..this production of “Nell Gwyn” was fantastic!  We were so impressed by the acting, the singing, costumes – everything!  It equalled a night out to any professional theatre – honestly.  As in every production there were several stand out performances – one from a young man playing the actor who always played the female role (remember this is Charles II time) and he was hilarious.  Comic timing that many pros would envy just oozed from him.  Then there was the young lady playing the lead role, Nell Gwyn.  Isobel Thom was superb!


Isobel Thom (as tweeted by Izzy)

She never missed a beat with her speech, her singing or the comedy – I do hope that she continues to act when she leaves for higher education next year.  A truly inspiring group of teenagers – we had a wonderful night.

Finally the student engineer asked me yesterday about my nursing at the Middlesex Hospital, London as he had come across some articles about the first HIV unit and a photographer who took intimate pictures in the early 90s.  The photographer is Gideon Mendel and he has published a book called The Ward…..the wards in question being Broderip and Charles Bell.


Photograph from collection by Gideon Mendel entitled The Ward

As student nurses working and living at The Middlesex, I believe that we were priviledged to witness some very special times.  They were not easy times and this was probably the first encounter that many of us would have with people our own age dying.  HIV and AIDS was a death sentence then and the majority of the patients were young gay men.  They were misunderstood and villified by certain elements of the press – they were blamed for this disease and feared by the general public.  I remember that there was a huge stigma attached to the unit even amongst other hospital staff in the early days, and haemophiliac HIV positive men did not want to be on the same ward.  Many of the young men had been disowned by family (for being gay) and their support network was from the gay community and the nurses. But I learnt so much about human nature, tolerance and love.  I still remember the first time I saw a Kaposi sarcoma lesion and a young man needing assisted breathing for pneumocystitis pneumonia – both AIDS defining illnesses then.  I believe that for many of us young nurses, we saw no distinction between these young men dying and others dying on the oncology wards.  We “grew up” in our nursing training knowing this terrible disease and the few retroviral drugs available at the time, but this was unusual.  Many of us went on to undertake a specialist course for Care of HIV and Aids once we had qualified (ENB 934 i believe!).  One of my friends also pointed out that it was very unusual for a partner to be allowed on the bed with a patient in those days – no matter sexuality.  The care was enlightened and a patient transfer to the AIDS hospice, The London Lighthouse, really stayed with me into my days as a hospice nurse.  It took years for other areas to catch up – I can still remember the first AIDS patient to be admitted to our hospice in approx 1997 and the ignorance (not intentional) amongst experienced staff.  The young men we cared for and those pictured in The Ward all died, but just several years later advances in pharmaceuticals meant that HIV was no longer a death sentence. As a former nurse and the mother of a young gay man, I am so thankful that times and attitudes have changed and must continue to.

Wow…bit longer than I intended so I will launch straight in and hope that you will indulge my first choice which is a post about Broderip ward.  There is some cookery and stress relief for the holiday season and something called “The Single Woman syndrome” – intriguing. So grab a cuppa and enjoy some new blogs!


Image from Anchored in Health blog


Please give these lovely people some feedback – it makes it all worthwhile!  Have a fab week,


Claire x

Pin for later

Monday Magic - Inspiring Blogs for You!



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?!

Medical Professional pin



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!

File_000 (44)

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.

File_001 (2)

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.


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.