Tag: CRPS Cure

Recovery from the agony of CRPS

Recovery from the agony of CRPS

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. I know I’ve been there when I had active 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.

CRPS is a nervous response to injury

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. With time, this can render 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’.

Then in desperation, I dared the universe by typing in ‘cure for CRPS’. Not expecting any response, just ‘n0 results’, the words ‘CRPS Italy surprised me.’ This led me to the site Complex Truths.org. detailing treatments at clinics in North Italy. I read on, thankful I am a biochemist and could understand the medical jargon.

You can recover from the agony of CRPS

It seemed despite the defeatism of all the other sites, that there was a chance, even 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 of my CRPS 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 Neridronate infusions for March 3, 2020. This involves a needle inserted into the arm to deliver the medication over two hours. Dr. Giusti sent me all the information and kindly updated me as to what pathology results etc I needed to send before approval. Patients need to be in reasonable health to avoid complications. As I was coming all the way from Australia, he wanted to make sure all would proceed.

Off to Italy for a cure!

I booked flights from Australia to Rome then a train trip to Genova for the end of February 2020. 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 for three years.

A slow recovery from CRPS agony

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. The neridronate acts on the bone cells that caused the nervous over reaction to the original injury. These are slow growing cells so the response to Neridronate is slow.

My Italian doctor reassured me I would fully recover but it would take months not days or weeks. He was right. It took four months for my swollen painful hand to soften and for me to wriggle the fingers. Gradually my wrist became less rigid, then my arm and shoulder. But I had to be patient and do exercises to get there.

The doctor said this could have been easier if I had been able to access rehabilitation soon after the treatment. But this was not possible for months due to the lockdowns.

LOCKDOWNS, 1, 2,3 and 4

Instead of a restorative European holiday afterwards, my husband and I had to flee Italy. While I was in hospital in Genova, 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 Italy as there were no hotels open.

After reaching the border by a deserted train, we found San Remo deserted as well. The whole world seemed in hiding from the virus.

Escape into France

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. Being a tourist was untenable. Also, to our alarm, French 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, the only novel with a CRPS character.

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 Publishing 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.

Joni Scott is an Australian author with five published novels: Whispers through Time and The Last Hotel. Joni has her own website; https://joniscottauthor.com.

 

The Last Hotel-Interview with Author

The Last Hotel-Interview with Author

Maureen of Maureen’s Lifestyle Blog interviews Joni Scot, Australian author about her latest novel, The Last Hotel.

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, hardback and kindle format and now an audiobook.

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