CRPS Cure - Joni Scott

A Cure for CRPS

By Joni Scott | March 19, 2022

What is CRPS?

CRPS. What the hell is that? How often do we see an acronym, a sequence of letters that does not register recognition? Well, the answer to what the hell is CRPS? Is just that ‘hell.’ The words may you ‘burn in hell’ may as well define CRPS.

Dubbed ‘the most painful disease known to humankind’ and ‘the suicide disease’, CRPS or Complex Regional Pain Syndrome, is a neurological condition characterized by intense pain, burning, inflammation, swelling and loss of movement.

It is a disproportionate response by the sympathetic nervous system to an injury to an extremity, a foot or hand. Often the initial injury is minor, a sprained ankle, a broken toe or wrist. But for some reason in some unfortunate people, the body responds by establishing a pattern of self-harm that can spread through the body in time, rendering the individual a cripple incapacitated by pain 24/7.

It can happen out of the blue to young or old, healthy or not. Millions world-wide suffer this incurable disease. All doctors can offer is pain relief via CBD oil or ketamine infusions and ongoing physiotherapy. Why am I writing about this in my usual history blog? The answer is I write this not to elicit pity but to give hope to others. You may have CRPS or know someone with it.

Oh, no! I have CRPS.

CRPS chose to attack me in January 2020 after a routine surgery for a broken right wrist. Plunged into excruciating pain, I could not comprehend what was happening to me. I googled and googled trying to come to terms with my diagnosis. I cried for days as all sites confirmed the prognosis of ‘incurable’, ‘debilitating’.

Until I dared the universe by typing in ‘cure for CRPS’. Not expecting any response, just ‘n0 results’, I was cheered to see the words ‘CRPS Italy’ and another Complex Truths.org. detailing treatments at clinics in North Italy. I read on, thankful I am a biochemist and could understand the medical jargon.

It seemed despite the defeatism of all the other sites, that there was a chance, a good chance of recovery for this dreadful condition. 100% within a year of diagnosis and at best 70% for individuals who had suffered longer. Compared to the cost of long-term pain relief and physiotherapy, over many years, the treatment in a clinic over two weeks seemed reasonable. Plus, a trip to beautiful Italy alone would surely cheer the soul!

The crippling pain spread to my shoulder and neck, immobilizing my entire upper right side. I felt there was no time to lose. With the help of my son and an interpreter, I booked treatment for the infusions for March 3, 2020. This necessitated flights from Australia to Rome then a train trip to Genova.

OFF in search of a cure!

All seemed to be going well for me until Coronavirus erupted in North Italy just days before my flight. As the virus already threatened Asia through which I had to fly, I could not get a refund. I am so glad now because if I had not gone then in early 2020 during that small window of opportunity, then when would I have been able to? Australia and many countries closed their borders soon after and Covid 19 became a global pandemic.

Yes, I received my treatment, four Neridronate infusions over a fortnight in a beautiful clinic set high on the hill overlooking Genova harbour. Yes, I recovered 90% of my function so that today I am only limited by residual stiffness in my right side that could have been prevented if I had been able to access rehabilitation soon after the treatment.

LOCKDOWNS, 1, 2,3 and 4

But instead of a restorative holiday afterwards, my husband and I had to flee Italy. While I was in hospital, lockdowns 1, 2 3 and 4 closed Italy. There were no ristorantes or cafes open to enjoy the usual vibrancy of Italian life. Borders to the east and north had closed. Only the French Italian border was still open. We set off from Genova railway station escorted by local police. All tourists had to leave.

After reaching the border and finding San Remo deserted, we continued on to Nice, hoping to find a hotel and reschedule our flight home. Our pre-booked three-week holiday, post treatment, could no longer happen as all borders were closing making being a tourist untenable. Also, to our alarm, hotels were closing one by one, like a pack of dominoes. Unable to secure a flight on our visits to a barely-functioning Nice airport, we took refuge in hotel after hotel, unsure of our immediate future. We met similarly stranded people from all over the world. They all had interesting stories.

At that point, I knew I would write up my story about CRPS if I recovered so others would know of the ‘cure’. But one day at the airport we met a young ballet dancer, a mother with a teenage daughter and a very helpful young chef from Torquay, all trying to get flights home. Why not add the plight of these people into my book and write not a non-fictional true story but a blend of fiction and true life?

THE LAST HOTEL

That was the moment when The Last Hotel was born, my story of love and loss, of lockdown and family, my story of hope. While recovering at a snail’s pace, I tapped out my ideas onto my old battered iPad. I could only use my left hand so it was a one -handed slow process, particularly for capital letters and punctuation. Once we finally arrived home in Queensland, Australia, I continued the writing in lockdown finishing the book in five months.

As I could not edit the typing easily, I sent the book to Tellwell for a tidy up. The result is I believe the only novel with a CRPS affected character (Maggie). But there are many other more interesting characters to meet, stranded in my last hotel. An inspiring novel based on a true story. Be encouraged on my women’s blog site./https://whisperingencouragement.com/

Joni Scott is an Australian author with two published novels: Whispers through Time and The Last Hotel. Joni also co-hosts a women’s blog; https://whisperingencouragement.com/ and has her own website; https://joniscottauthor.com.

The Last Hotel-Interview with Author

By Joni Scott | February 14, 2022 | Comments 0 Comment

An Interview with Joni Scott, Author of The Last Hotel

First of all, congratulations on publishing your book. How long did it take to write it?

Thank you, Maureen and thank you for taking a chance on me and my book. The Last Hotel was very keen to be written, occupying my mind day and night so it took five months then a few months back and forth with publisher about edits, quotes, possible inclusion of song lyrics etc

Given that the story is inspired by real events, are there details that you chose to omit from this book?

I changed names, businesses and did not mention the airline company that we flew with as I gave them negative press. I didn’t want to get sued by an airline! Only the first half of the book is based on real events, up to the meeting of strangers at the airport.

After that fiction took over. I have never been to Beaulieu-sur-Mer, only passed it on the train that night we fled Italy for France. The name caught my fancy as it translates as ‘beautiful place by the sea’ When I met the interesting people at Nice airport the next day, I had the idea for the book, like a light bulb moment.

My husband and I shuffled around hotels for another week and kept bumping into Kaz and Lou the two young women who lost their jobs in St Tropez, but we never saw the others again. I don’t know if they went home soon after or stayed put in France. I so wished I had taken names and addresses so I could tell these lovely people that I put them in a book!
The second half of the story is a “what if’” version of life. Personally, I would have loved to have stayed and met Lotte and Rene and darling Henri and Juliette. But they are fictional characters I imagined just like the bakery and bookshop.

Sitting on my couch back in Australia, I walked through the places in Beaulieu on Google Earth and discovered that in the street there really is a bakery and bookshop! How cool is that! Maybe someone will ask them, “are you the bakery in The Last Hotel?” I hope a reader will go there to check out the town. I intend to when we can travel overseas again.
In reality, we managed a flight home early May. I started writing the book the day I returned home. It was so vivid, I had to get going with it despite only having one functional hand, my left one.
I did not get the use of right one back until November 2020 and it is still very stiff.

Have you ever considered writing a personal memoir?

I think every book I have written (now 3) contains aspects of oneself ie memories of childhood, relationships. Who would want to read my memoir anyhow? haha

What was the hardest scene to write?

The chapter where I introduce Jenny’s family. I rewrote the part about Pieter quite a few times as I didn’t want to offend any lesbian readers and having no experience of them, I wasn’t sure how Pieter should think .In the end I chose confusion for her as she is still young and discovering herself.

In your opinion, is it prudent for people to start travelling again?

We can travel much yet . However, I understand people have been cooped up so long in Europe and Britain that if the governments don’t allow it, there could be mass anarchy. We have had it so easy in Australia, particularly Queensland compared to the rest of the world. We only had to wear masks for a short time yet people still complained. Time will tell if it is prudent to allow travel again. Once it is the European summer, there could be another wave.

If you could go back in time before the pandemic, what would you do differently?

I would still risk the trip to Italy. If I had not gone in the slim time frame of those few days, before we couldn’t go overseas and before Italy shut borders, I would still be in agony with my arm, shoulder and hand. Literally it was like being on fire 24/7.

I am on a Facebook group for CRPS (Complex Regional Pain Syndrome), and people suffer terribly. Many have experienced it spreading from limb to limb or over the whole body. It is called the suicide disease. So, I feel so fortunate to have been able to have treatment and get 80-90% better.

The treatment is most effective in the first year. If I had not gone when we did, who knows when I could have gone to Italy for the infusions? The Last Hotel would not have happened and that would be sad. The book will always be so special to me as I wrote it tapping with my left hand in such adverse conditions ie right arm propped up on pillows, ergonomic keyboards, mice, apple pencils, dictate devices etc. Everyone said I was crazy!

What do you miss most about pre-covid life?

In Australia, it has not been bad but overseas, people have been separated from loved ones and how the very demonstrative Italians, French and Spanish have managed without all those hugs and kisses, I cannot imagine. I suppose social distancing has led to people being wary of each other which is rather sad .If it goes on too long, I will miss travelling overseas.

Is there something we can cherish about this new way of life?

Appreciating home life more? I have enjoyed being home more, writing, doing jig-saws etc. while I recuperated my right side. I am grateful to be healthy and home in Australia. So many Australians are still stranded overseas. If we had stayed on the Riviera, would we still be there, unable to get home?

Is there another book in the making?

Yes, a few. I have finished the sequel to Whispers through Time, my first historical novel based on the family research of my sister. This ‘sequel book’, Time, Heal my Heart, is both a stand alone romantic chronicle of life during world war 1 and a sequel to the story of Winifred, my grandmother. The book is at the publisher now and will be released this year. Again, very interesting characters invited themselves into my book and set up their own sub plot! I had to put up a sign, No Vacancies! lol
Also I am part way through another book, ‘Tangles’, inspired by my hair dresser. I realised hair dressers are part psychologists, meeting and advising so many people, so I have a full complement of characters in this modern day drama of life in the suburbs. A real woman’s book, this one, with an interesting Indian sub-plot.

Where can your fans and well wishers connect with you?

I have a few websites, one on Austen Macauley Publishing, then my official one is joniscottauthor.com then an author site on Goodreads. Reviews are welcome!

The Last Hotel is available in paperback and kindle format and now audiobook.

Sequel to Whispers Through Time

By Joni Scott | May 13, 2021 | Comments 2 comments

I have finished writing the sequel to Whispers through Time. Trying to find an original title was not easy. Hemingway took the best of them! I So hoping the title, Time, Heal my Heart is unique and fitting for this sequel to my first historical romance novel. It captures the themes of the book, Time and Love.

TIME HEAL MY HEART

TIME HEAL my HEART is in the process of being published with Austin-Macauley, London where its predecessor, Whispers Through Time, the first book in my Time Trilogy was published in 2020. Hopefully, it will be released mid to late 2022. Time Heal My Heart can be read as a stand alone novel or exciting sequel to Whispers through Time. A wonderful saga of love, loss and family, it continues the story of sisters Winnie and Francesca now in Sydney, Australia. Their lives, like millions world wide, are thrown into unexpected turmoil by the outbreak of World War One. Gustave their brother is soon fighting on the Western Front in France as he was already part of the Royal Fusiliers. The sister’s new husbands are obliged to support the war once Australia joins the British War Effort. The women too are swept up in the domestic war effort, The Home Front. An intriguing subplot follows the secretive love story of Lisbette, Winnie’s French-born neighbour, relocating the storyline to the magical isle of Mont-Saint-Michel in Normandy, France. Another parallel storyline centres on war torn France involving the tragedy of shattered war orphans. But as storylines must, these threads weave together to create a tapestry of love and loss in wartime.

For those wondering whether Francesca finds love again after her tragic affair in Whispers Through Time, the answer is a resounding yes. But it would be a spoiler to tell you the identity of the lucky fellow. It is Winifred this time who has loss she must recover from. In this respect I stayed faithful to the real life events of my grandmother’s life. As this book is set during World War One, it encompasses a challenging time for our characters. Both Australia, the sister’s new home and England, their childhood home are at war and soon the whole world is embroiled in conflict when America enters in 1917. The horrific violence, lasting five years, culminates in the Spanish Flu outbreak of 1919. I was researching this flu when COVID happened in 2019 exactly a century later. Such a sense of deja vu! As some may know, I had a medical crisis and terrible diagnosis of CRPS in January 2020. I lost the use of my right side and so could not do much especially write. Instead of finishing the novel, I booked into a clinic in Italy that offered a cure for CRPS. Unfortunately Covid broke out there just before my flight. But I still went, had the treatment in lockdown in Genova, Italy which inspired me to write The Last Hotel. This story is partly based on my flight from Italy to the French border and subsequent lockdown on the French Riviera in the last hotel open. During lockdown near Nice, in Beaulieu-sur-Mer, I started writing The Last Hotel with my left hand, finishing it when I finally managed a flight home to Australia later that year.

Only once this contemporary novel was published in March 2021 did I resume Time, Heal My Heart. By then I could use my right hand again though the recovery was only 80 per cent. I’ll never be a speed typist but can slow poke along in a lop-sided fashion.
So please stay tuned for the continuation of the life of sisters Francesca and Winifred! The final book in the trilogy will not take so long, I promise as already half written.

Tag: CRPS Cure