A TALE OF 2 ORGANS
Discovery, denial and acceptance of SarcoidosisApparently life begins at 50 – in August 2019 when the big 5 Uh Oh! was about to bestow its magic on me, I wasn’t feeling it AT ALL! My friends and family were, however, determined that I had a great time, ignored my sulking, and they made sure I did – we partied big time and I was very spoilt.
I decided as part of my 50th overhaul I wanted just two things – blonder hair and straighter teeth. I do realise looking at these words on paper how shallow that sounds in view of what happened next! But I am from Essex after all and these things are virtually essential.
Well, I got two things – but not those – not yet – instead I developed a dangerous inflammation in my heart and lungs called Sarcoidosis. Err hello! That was NOT on the Vision Board on my fridge!!
I came out of hospital on 1 January 2020 with a pacemaker, scared, inexplicably angry, exceptionally weak, but determined to push through my recovery and get back to normal as soon as possible. Part of that process was regaining some control – and so with the help of my sister and support of my family, we switched to a plant-based diet to reduce the inflammation in my body. Of course, from March, all anyone of us could do was ‘control the controllables’ against the pandemic that changed our whole world for ever.
My Blogs are an opportunity for me to make sense of a life-changing illness that came out of nowhere and to document the last year. A rare illness can be a lonely place so if these help someone else suffering and make them feel they are not alone, that would be a wonderful thing.

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Sarcoidosis. How can I have something I have never heard of?!!
The Doctors daily ward rounds in a hospital are a big anticipated event for any patient, but when you don’t know what is wrong with you and you are desperate for information and just want to get better and go home, they take on another level of focus. They normally...
If something doesn’t feel right, it probably isn’t
My entire experience of heart problems is based on films where the heart attack victim clutches their heart on the left side of the body, screams and drops to the floor - dead. At no point in any film I have seen, does someone clutch the middle of their chest and say...
Hospital – this wasn’t my first rodeo!
It’s been a while since I’ve stayed in hospital for a period of time, and since the last time I have enjoyed 11 years of having an en-suite at home. I have never flat shared, back packed or yearned to sleep in a hostel with lots of other people. I am not proud of this...
Isn’t that interesting…..
I was very slow to realise that I was the star of my own drama. Insisting on my ipad, notebooks and my diary being brought into me so I could continue working, refusing to pronounce Sarcoidosis properly as I refused to believe I had it – I called it “Scardiosis or...
If Carlsberg made pacemakers…
If Carlsberg made pacemakers, they would roll out the red carpet for my ‘top of the range’ Pacemaker. It wasn’t the usual matchbox size which I had been expecting – of course it wasn’t – it was the size of a brick, complete with its own defibrillator, and called an...
Would you prefer to feel strangely elated or seriously paranoid?
I thought I was done with the tests – but it turns out there was one more to go. After my trauma with the cardiac mri, I naively thought nothing would ever be as bad again. I was very wrong. A lung biopsy is done while you are awake. In the literature given out...
The Big Reveal …..
Approximately 1 year ago, on 16 December 2020, I started writing my blogs as I wanted to get my dicing with death experience down on paper before I forgot all the little details and emotions that had made me laugh and cry during my time in hospital. Also, I was very...