This blog post Alicia was writing for a few days, actually used the application to dictate the text on the phone. We took this picture in London over 2 years ago … Happy times …
With all my heart, I personally want to thank everyone for their great kindness and great support. For all donations, words of hope, encouragement and faith that it will be good. You are great! We could see how many good hearts surround us. Thank you very much!
Unfortunately, we have more questions than answers. Next symptoms, more tests, next consultations and waiting. I feel different, sometimes worse and worse, and I dream that I have as much strength as before.
A few people asked if I was angry at doctors in the UK. We met arrogant, unprofessional, unable to listen to doctors, but also very good, kind and willing to help specialists. I believe that we are well on the way to obtaining the right treatment and full diagnosis. Our consultant from London, dr Alan Hakim a global EDS expert, supports us very much. He is a wonderful doctor with a golden heart. It may not be a simple and fast way, but I know that rare diseases require a long diagnosis and it is great luck when you meet someone who has knowledge of this topic.
It’s obviously annoying because you can not act quickly when you feel bad. And I admit that there was a moment when we were terrified, depressed and lost. We were in the mental desert. Do not think that I am only so strong, there was a time when I cried with pain, the helplessness, that they constantly send us back, that everything takes so long that nothing is certain. I cried like a little girl and my husband cried with me. We did not know what to do. One day he hugged me and said: “I can not bear it when you cry so much. We’re fighting!”: In his eyes, I saw the entire care of the world and all the sadness of the world. That’s how I touched the most beautiful side of love. Not in a kiss on the Eiffel Tower, not in bodies tucked in with romantic music, not in the eyes of the dinner party at the seashore. But at this extraordinary moment, when he wanted to save me from all my sadness and pain.
It all started in the summer of last year, then I felt bad. We thought it would pass. But it was worse week by week. There were many different symptoms. In the beginning, it was easier to gather strength and fight, but then it changed. My husband sacrificed so much, he had to give up on so many things, change so many plans.
My husband is my HERO! He showed that he can be stronger than hundreds of men exercising in the gym, he showed that he can be more durable than many long-distance runners, he showed that he is more courageous than those who climb the highest mountains.
We are still fighting and I am lucky, this great gift that my husband is with me. I believe that we will overcome these difficulties together. I love You very much, my husband. I am proud that You are by my side! Thank you for support from your family, without whom it would be difficult to survive this hard time.
We have not imagined that life (we were to be a pair of happy elderly people living in Spain or Ecuador), but one thing is certain, what we experienced strengthened our relationship, changed our priorities, revised our expectations, taught humility and patience.
We always lived very actively, we had crazy plans, which made our mother dizzy. We had big dreams. And then we have, but different than before.
Faith, hope, love help them do wonders …