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!

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.

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!

https://news.fitzrovia.org.uk/2017/10/15/life-on-middlesex-hospitals-aids-wards-revealed-in-book-and-exhibition/

https://lightscameracrohns.com/2017/11/27/10-tips-for-those-who-dont-have-ibd/

https://www.anchoredinhealth.com/home/2017/11/24/holiday-recipe-series-cranberry-crumble-bars

https://www.mecfsselfhelpguru.com/2017/11/spoonies-saving-the-world-our-value-as-the-canaries-in-the-coal-mine.html

http://chronicallyhopeful.com/shaking-trembling-mecfs//shaking-trembling-mecfs/

https://katiejunesmedley.wordpress.com/2017/11/23/update-blogmas/

https://kedawithani.wordpress.com/2017/11/11/the-single-woman-syndrome/

https://mashaellman.com/2017/11/26/did-you-know-you-have-endless-possibilities/

https://iwillnotliveinvain.wordpress.com/2017/11/26/until-then-bye-dane/

https://lisaorchard.wordpress.com/2017/11/25/looking-for-some-stress-relief-for-the-holidays/

 

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

 

Claire x

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