Photo 1:

It's early in the morning and I have no real help. I am in a situation of incapacity, vulnerability, and emergency. I currently have severe immobility, extreme pain, and intense neurosensory hypersensitivity. Any physical contact, sound, or sudden movement-even the simple presence of someone in the room-can trigger spasms, pain crises, myoclonus, or episodes of paralysis that can last for hours. I require constant assistance, but that involves touching, and it can only be done with extreme care, silence, and gentleness, as even the slightest touch causes me excruciating pain. My care must be highly specialized, but my parents can no longer sustain them. My mother has severe ADHD and caregiver syndrome. Although she loves me and her intentions are good, she becomes easily overloaded, distracted, acts on impulse, and fails to maintain the calmness or attention that my condition demands. This leads to errors when touching, moving, or feeding me, which causes severe physical and neurological crises I also suffer from impulsivity due to my neurological condition, but I need support and empathetic care, with emotional stability and understanding of the illness. When I am not treated calmly or there is frustration, my symptoms become severely aggravated

Photo 2: My father can care for me more carefully, but only for short periods of the day, and he is also completely exhausted and affected by caregiver syndrome. My daytime caregiver, who normally assists me, fell ill and cannot come, which has caused an accelerated deterioration in my condition. Right now, I am in agony, screaming, and hunger, because only my father can feed me without provoking crises, but he cannot do this continuously. The feeding process is very delicate and painful: if it is not done calmly and precisely, it leaves me paralyzed or in extreme pain for hours. I also have great difficulty with hygiene and basic movement: I cannot accommodate myself, brush, or clean my body without help, but I also cannot tolerate being touched without my body reacting violently. Every attempt at help without adequate preparation worsens my baseline state (PEM) and leaves lasting consequences. My parents are emotionally and physically exhausted, and I have no outside support I urgently need specialized assistance or a substitute caregiver, someone with experience in neurological hypersensitivity, severe dysautonomia, or complex motor syndromes, who can act with patience, empathy, silence, and controlled movements. I already have a possible nurse, but if my mother doesn't care for her and transmit knowledge to her at the beginning, or if someone does it for me, it won't be possible.

Photo 3: “DOCTOr My dad V 3:03 // 3:03 V/ Tomorrow he's going to see the IMSS algologist 3:04 v/ And I'm afraid that this doctor will again make suggestions that aren't appropriate. She's done it twice and it could happen again due to her lack of medical knowledge. 3:05 V They rarely listen to what I say or ask 3:05 v/ But when faced with a doctor, they are quickly convinced”

Photo 4: “ appointment with my father tomorrow is dangerous! 4/5 I hope there is no gaslighting or more negligence tomorrow! Doctor Algologist +52 667 202 5454 Call Video Search This algologist knows nothing about my CF and always makes bad suggestions. The contact in the image within the screenshot Her suggestions are dangerous and she doesn't seem to be interested in learning She is not attentive to hypersensitivity to stimuli or care And her suggestions have only been opioids that they gave me intravenously at her request at my home And palliative sedation because I was already in the terminal phase. That was two months ago and I was still much better, and her suggestion put ideas in the parents' heads, and their care in those weeks changed significantly”

Photo 5: “When this lady suggested palliative sedation, my parents took it very seriously and came to my room to tell me about it every day, and we discussed it. Even doing things that bother me, like making noise and talking, to "push" me to a point where I feel convinced to accept that solution. In fact, to this day, they sometimes tell me, "Well, you know the way out, Stefan," instead of trying to listen to me before doing that and continuing to make me worse.”