By Tiago Roque
(aqui o meu post em portugues: Eczema / Psioriase – sofrimento )
Today, on the day of Our Lady the Mystical Rose, I want to make a vow that as soon as I am cured from this suffering, I will write a long text that may help others endure what I am going through, translating it into English.
As by the grace of God I have the gift of forgetting pain, I will write it down here. The psychological and physical pain I have been going through. These are notes I will put in order later; they are not in chronological order.
All doctors say that the monster doesn’t go away. It only sleeps. So, it is hard to free myself from the sensation that it might come back all of a sudden. This terrifies me.
- My foot hurt unbearably just from walking from my bedroom to the bathroom; – merely a meter and a half away – each step I took meant despair. I would only walk leaning on the walls.
- What I like the most, which is to do my walking, was taken from me
- Looking at my body in the mirror depressed me
- The comings and goings, “getting better and getting worse” from cortisone, filled me with hope and despair every time
- The maddening itching. I couldn’t stop scratching, I lost control – even knowing that it was hurting me and that I would pay a high price for it – and ended up sweating, desperate.
- My world, which was reduced little by little, was eventually limited to my bedroom.
- The distancing from all of my friends; only the close ones stayed. I had the sensation to be arousing pity on others.
- The depressing moments in which I pitied myself. I was feeling the worst but had to hold strong, not saying anything.
- My hand, the instrument of my work, was completely affected.
- My hands, which connect me to the world through the shaking of hands, always covered by gloves, something I incorporated as if my life had always been like this.
- Itching, itching, and itching. Taking off the gloves and starting to scratch desperately.
- Every change, like taking a bath, for example, meant a very high price to pay, with a week of relapse.
- The doctors always on the cortisone automatic pilot. The holy Dr. Fernando is helping me at this moment, may Our Lady of the Mystical Rose illuminate his decisions.
- Always thinking a medicine would work and in the long run it never worked.
- Everything got worse when I decided to treat it. May 2010. From then on, I went into the whirl of cortisone, never getting out of it until April 2011, when I started on MTX
- The MtX has been giving me depression crises and I sleep and talk like a crying baby
- During the moments of crisis, the incontrollable tremor, the gigantic cold, even being 38 I feel like an old man – always covered by a blanket.
- Looking at the other people in the street walking normally and knowing that I dragged myself forward, forcing myself to walk.
- The fear of start talking nonsense, to lose control.
- The shame of being sick. That was a terrible discovery. You are ill, but you are ashamed of it, as if it were your fault.
- My wife’s despair, which made me feel even more desperate. I was making the one who is the closest to me and the one I love the most suffer.
- Knowing that she cried furtively while she spoke to her mother
- The moments in which I saw that God didn’t listen to my wife’s tears, when she prayed and cried. On these moments I felt revolted at God.
- There were moments, but only moments, in which I completely lost my faith. There was no one to help me, and I am certain that I do not deserve that.
- And if I do deserve that, my wife doesn’t deserve to suffer for it.
- The sensation of wanting to work with my hands and not being able to; having to stay home because I was losing too much protein.
- The doctors that don’t listen to the ill, they just think of the treatment they have in mind
- Now I have adopted the treatment of the holy Dr. Fernando, even though another doctor wanted to change that.
- Not wanting to tell it to anyone, but knowing that everyone knew.
- The scratching is as if I were punishing my body for what it is doing to me.
- The fact of finding no greatness and no spiritual comfort in sickness, as opposed to the saints, who are able to attain that.
- Feeling ashamed at the maid having to change my sheets swamped with the liquid that comes out of my body.
- While I’m writing this, I have taken the gloves off, and it soon starts to itch.
- Looking at the pictures I took last year, this year, and seeing that everything I did was to get worse, worse, worse. When I look at these pictures, it seems as if I’m all right, and I was still much better than I got later.
- The swollen feet. I vowed that, for the rest of my life, whenever I see a beggar with swollen feet in the street, I will immediately give him money, asking no questions
- The loss of hope. As if this were now a condition for the rest of my life, taking me to the desire to no longer fight against the illness. The tiredness.
- Disgust. There is a moment of great disgust. I don’t deserve it. I didn’t do anything to deserve this. I always tried to honor what has been granted to me. It isn’t fair
- Wearing a watch for ten minutes and having a week of problems on my wrist.
- With the Grace of God, work is flowing well, but the inner conflict is there, because the illness doesn’t let me enjoy or take pleasure in it.
- The recent sudden and violent depression crises.
- The impossibility of planning each day because I never know how my body will react after that night.
- Sleeping, escaping from reality, sleeping.
- Never knowing what will do me good or what will do me harm.
- People looking at me when they see me in the street wearing gloves, but I have no choice.
- Limited regarding clothing, I can only use one type of shoes, three sizes bigger and clothes that don’t mark the body, and that way I limit everything.
- Feeling like doing nothing. Having superstitions about starting a work since May 2011, when I had a severe relapse the day I decided to do it.
- Moments of deep sadness, especially at dinner. I lose heart.
A BIG THANK YOU, PAULO COELHO, FOR PROPAGATING THIS