1 year and 2 days have passed since the diagnosis. Probably a lot more time of daily living with the disease. It is not a condition; it is a disease!
I never felt like the healthiest person in the world, but in the summer of 2019, I felt truly sick. Sick to the point of saying to those who were beside me: "I think I'm going to die". I know that we are all going to die, but at that moment I felt an intense weakness, the energy leaving, as if there was only a fragile line between the designated other side and this side of life. I did not ask anyone for their opinion on sharing this topic of mine, because the fight is also mine. I know that it affects everyone around me, but what one feels is what one feels. Pain is a concept present in practically all my days. I know that the disease was recently discovered, and it is difficult to "get it right with medication".
There is much to discover regarding this problem and the symptoms differ from person to person. What is known is that my body tries to defend me from anything and everything, but it is so confused. It triggers an exaggerated response to what is bad, but also to what can be good. Assimilation is difficult for him, so he expels everything. If he defends me too much, why should I defend myself less? What have I learned from this? It is hard. The appointments are multiplying, exams and lab tests are constant, where hospitalisations can appear in the middle. The lows come and go, but the lows are very low.
Today is one of those days. I am having a very painful thrush crisis waiting for the cortisone to have an effect. What have I learned from this? To not be ashamed. Fighting stigma, as I do on many other topics. Do not make excuses for not being with your friends, or not going to this or that. Tell them the real reason. Only by knowing your truth and whoever surrounds you, can you have greater and better social support, as well as greater and better time to be alone if you need it. The message is: Relativise. And let in healthy relationships, healthy environments, healthy thoughts.
Know how to respect our time, listening to our body. And accept
But I wanted to add:
A few days ago, I wrote this text with some emotion, the emotion came later, when I read you. Suddenly, the positive side of what is bad appeared. The theme that so often steals my smile, gave me back the sparkle in my eyes. Suddenly, I shivered. I really like that what I do, brings contribution to the other and deep down I had that hope. I did not expect the report of what is normal in my daily life to become a wave of contagious energy, but the truth is that the messages from people who did not remain indifferent and who struggle, fought or deal with problems multiplied like crohn's disease, psoriasis and cancer. I do not want to let you go. I felt an incredible boost and my gratitude became immeasurable. The tears of pain become tears of love and enthusiasm for this union. I leave my email to everyone who also wants to leave some sharing.
Whoever has done it has become an inspiration for me. I promise to read and answer you always.