Willy (50) worked as a care coordinator in a nursing home and a couple of hours as a nurse on a call basis in the district. She trained a lot and trained with a friend for a triathlon.,, I was very sporty, lived healthy and had a nice life until I made a wrong landing on October 22, 2003 after a somersault. I had a crack in my foot and I walked through it first and just worked. The therapist just told me to move through the pain threshold. Five weeks later, my foot became thick and it turned blue. They put my foot in then, but the pain only got worse.” Willy was 34 years old and her children 4 and 6 years old when she was diagnosed with CRPS in January 2004, then still under the heading of post-traumatic dystrophy., Fortunately, I was diagnosed quickly and was able to get started. I've had many treatments and infusions of mannitol, but eventually ended up in the rehabilitation center, because my foot always shot back in and was in a weird position.” Willy benefited greatly from the Macedonian method, which is a treatment aimed at restoring function, in which the patient has to move through the pain. This went so well that after 2 years she could walk again, but her foot shot in the wrong position. Willy had dystonia due to the CRPS.

, “What do you have on that foot now? ”
, “I was tired of it and asked if a prosthesis could be made for me, so I could walk on my knee, my foot was just hanging a little.” Willy had cramping attacks throughout her body and ended up in the hospital and later even in a nursing home.,, I have generalized dystonia, that is, I have dystonia throughout my body. In 2015, the rehabilitation doctor said to me: What do you have on that foot? ? The dystonia expanded and it was decided to amputate. In 2006 I was supposed to have an amputation, but that could not continue because of meningitis.” Despite all the setbacks, Willy has always had the courage to continue. Because of the amputation Willy was much less hospitalized and she slowly got her life back.,, I have a good network and dear people around me. Something will come back to your path. I can no longer work, but I do volunteer at Stichting Mentorschap Overijssel Gelderland. I'm a mentor for a couple of clients, and the great thing is, I can organize it whenever it suits me. People are always at home and I can always walk in.. If I'm having a bad day, I'm not going. I have my own direction. I am a human being and love being among the people. I'm with a choir and a craft club and I'm a happy person.”

On 1 leg you can not stand
Willy decided to share her story and started writing. That resulted in three books. Her last book 'On one leg you can't stand, 'came out in November 2019. In her first book, Willy explains who she was when she didn't have a CRPS yet and how her life changed when she got CRPS. The continuous fight against instances to get what you need and what you're entitled to runs like a thread through her books. The need to challenge rejections such as an adaptation to the car will be very recognizable for people who are chronically ill. But also the special things she experiences get a nice place in her books. ,, So I sat next to a mother with her daughter of 9 years with Down syndrome. The girl asked where my leg had gone. So I answered that my leg was sick and hurt a lot and they took my leg away. The girl asked if I was out of pain now and I answered that I was no longer in pain. That girl gave me a hug spontaneously. That was such a beautiful moment!” Willy's latest book is about the past 10 years. With her books she wants to help other people.,, I like it when I can do something in return for peers. When I got CRPS there was no information to be found, only 1 book. That's why I think it's important that I can help others with my books how to deal with CRPS and to give them tips on how, for example, you can get reimbursed services via the WMO if they are rejected first. “Willy has now become easier and harder and dares to say more. For example, she asked the WMO advisor why he always had to fight this way instead of thinking along., Because of the dystonia I need an adjustment to the wheelchair every three to four months, a new orthosis. At first I had to make a new application. Now this is easier and I only have to tell you when it is necessary, instead of having to go through the whole process over and over again.”
In addition to publishing her own books, Willy also gives presentations about CRPS.,, I like to give presentations and inform people about CRPS. I notice that people often get scared when they realize that CRPS can happen to anyone.” Willy is still full of plans. For example, she would like to publish her books as audiobooks, but that costs about €3000, - per book. Therefore, she will soon start with a crowdfunding.,, My books are easy to read, no lowercase letters and it's like talking to you, so I often hear that my readers could not put my books aside and read them in one jerk. I realize too well that if you're in a lot of pain, you don't have patience to read. How nice is it then that you can lie down and be read aloud.”

Willy's books are available for sale at Bol.com or through its website: www.deboekenvanwilly.nl . The books cost €14,95 per piece. If you order the complete series (all 3 together) you get a discount.

#crps #chronicle #posttraumaticdystrophia #dystrophy #soreness #at1beenkunjenietstand

On 1 leg you can not stand