Monday Magic – Inspiring Blogs for You!

Welcome to the last week of March and another Monday Magic on a beautiful spring day.  We have managed two cinema trips this week – yes, two! – to see very different films but both equally striking.

Monday Magic Inspiring Blogs for You! (7)

The first was Bohemian Rhapsody and I know that we are very late to the party.  The portrayal of Queen and particularly Rami Malek’s performance as Freddie Mercury were outstanding (if sanitised!).  It is difficult not to be swept along by the soundtrack of Queen’s greatest hits and then for those of us who remember Live Aid, the depiction of the concert in the old Wembley Stadium was a true trip down memory lane.  What I hadn’t expected was to be so overcome with emotion towards the end of the film and find myself in tears by the end.  The depiction of a hospital waiting room and a young, emaciated man sporting a a very particular lesion on his face took me straight back to the late 80s and my London teaching hospital.

It was an extraordinary time to be working in one of the few hospital’s with a dedicated HIV and AIDS unit (see my previous posts here and here).  As young nurses we were confronted by fear and ignorance of a disease that then carried a death sentence and also by a greater intolerance of same sex relationships.  I can remember being asked if I had to touch the patients, or if they had different bedsheets and what happened to their cutlery after they ate!!  There were question marks about applying for mortgages and if you sustained a needle stick injury the subsequent HIV test would definitely reduce your chance of being granted a mortgage.  Then there was the series of commercials run in the UK by the government – brutal, scare mongering and to the point.  But for me the film brought with it a sea of faces – young men – all robbed of life at such a young age.  It was the first time that most of us had been confronted by the certainty of death in patients who were in our own age group.  We were comforting parents and getting to know groups of friends who might have been our own.  Those names and faces remain with me all these years later and as Freddie Mercury declared that he wouldn’t be a poster boy for HIV on the big screen, the tears flowed as I was transported back to that ward in 1990.

Gideon-Mendel
The Middlesex Hospital from Gideon Mendel

Last night we went to a special cinema screening to commemorate the 75th anniversary of the “Great Escape” – that is the actual escape during World War II that the Steve McQueen and Richard Attenborough film was based on.  Hosted by Dan Snow, historians were joined by family members of some of the actual RAF men who staged the escape in 1944, and also by actors and crew from the film made in 1963 to depict the events.

One of the stuntmen who set up the iconic Steve McQueen motorcycle stunt at the end of the film had been flown in from New Zealand – he had some stories!!  I was really struck by the comment that it was an officer’s duty to attempt to escape and to create as much turmoil for the enemy – the Germans in this case – as possible.  These men almost certainly did not expect to get home if they managed to escape, but they did plan to continue fighting and to be a thorn in Hitler’s side.  Meanwhile the RAF were amongst those also remembering the men in Poland at the site of the POW camp, where the prisoners had dug out 75 years ago.  It was a very long (nearly 5 hours) but worthwhile evening……even if I couldn’t stand up by the end!!  When I popped my ankle out, hubby said we needed the inflatable evacuation aircraft chutes to get me down the cinema stairs….cheek!

So today I have been recuperating from my night out and have found a great variety of blog posts for you.  I hope that you enjoy everything from the fire eating gutsy goddess to some fantastic tips about plastics and the planet…..sit back with a cuppa and enjoy!

 

https://laughingatthesky.blog/gutsy-goddess-tessa

https://relationshiphelpers.net/083-personal-growth-is-self-care-selfish/

https://nolightwithoutdarkness.com/2019/01/09/beat-irrational-fears/

https://ablissfulblue.com/people-pleaser/

https://wellnessmunch.com/2019/03/11/cinnamon-the-super-spice-in-your-kitchen/

https://www.crestingthehill.com.au/2019/03/expectations-to-free-yourself-from.html

https://carolcooks2.com/2019/03/25/plastic-the-latest-news/

https://fightmsdaily.com/2019/03/24/the-rant-about-healthcare-insurance/

https://lightscameracrohns.com/2019/03/25/why-my-husband-is-much-more-than-a-caregiver-dr-phil/

https://itrippedoverastone.com/2019/03/19/fake-it-until-oh-stop/

Please leave some comments, like the posts and make someone’s day!

Have a great week,

Claire x

Monday Magic Inspiring Blogs for You! (8)

 

 

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!

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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.

The-Ward-14
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!

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

beckycranberrycrumble
Image from Anchored in Health blog

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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Monday Magic - Inspiring Blogs for You!

 

Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life