Every single day is exactly the same day: “wake up, open your eyes, struggle two hours to get up, go to the toilette, take your pill, have breakfast, work, take your second pill, eat lunch, keep working, eat dinner, take your third pill and the ones that make you sleep, go to sleep, fall asleep. Repeat”.
My everyday routine is my constant scar or reminder that, yeah, I have this thing that made me who I am today, that built my strong character and self-confidence, but the one that makes me miserable frequently because there is a part of constant suffering that I can’t let go.
I feel that I am living extra days, because parts of me died already since I was first diagnosed, parts of my spirit gave up and the ones that remained are tired of keep going, tired of suffering, tired of maintenance, tired of this job without vacation.
My head hurts. My heart aches, my eyes are swollen. I can’t breathe so well and my tears won’t stop falling. Sometimes I wish I didn’t have to do this anymore, let myself go and let it consume me. But then, I think about them, my family and how much of a great toll it would be for them taking care of a walking corpse.
I can’t let go of these thoughts, I can’t forget what I have and I can’t differentiate between this thing or a normal human feeling. All I know is that it hurts too much every time for the smallest thing and it feels like it will be like this forever. In a way it will be this way forever, cuz, I can’t cure it. All I can do is maintenance.
I have to confess though that, sometimes I feel safe in the aching, I enjoy it, there is some sense of comfort, cuz it feels good to cry when you are hurting, but when the pain hurts until it reaches my core, is when then I start questioning if all of this is necessary, worth it, valid. I don’t want it, all I want is to be asleep and my consciousness to be asleep and that it stays that way.
No one gets it. No one sees it. No one asks anything. I am battling this on my own, and I get it, is mine, is in me, is my responsibility, but, 1-person team work is exhausting. If I could change it, I think I would. I love parts of it, but I hate almost all of it the most.
I can’t stop thinking about it. I am a broken record. And most people tell me: “you are not your illness, not everything that happens to you is because of your illness”. But, what the hell do they know? My brain is f*cked up, sick, abnormal, damaged. So, everything that I feel, do, tell, make, give, decide will be a bit f*cked up, sick, abnormal, damaged.
I am living extra days… because parts of me died already. Because of this, I have to, HAVE TO stop living free or how I really want, and then I just have to adjust to a “routine”. I can’t be spontaneous, I can’t choose to love deeply, or care deeply because if I do, I suffer too much. This is about EVERYTHING in my life, not just people in it, jobs, activities, passions, thoughts, memories.
I doubt everything, even when I am sure about everything. I doubt myself, my decision-making capacity, whether I make the right decisions. I stopped living when I got this. I stopped being free, my bravery stopped, my crave for new things and sensations stopped, I live now with fear, fear of living, of loving, of leaving. Who knows anyway, right?.
I do not know what I want, and I am 33 now. All I know is that I wish I didn’t hurt this much. I feel I hurt the most before really enjoying my life. I think about death every-single-day, mainly mine, like I am waiting for it, but, I also think about the death of my family, who will leave first? and how that will affect my thing. How will I survive when they are gone or when I grow old?
I want everyone to know who I am in real, I wish the whole world would know about this thing I can’t disapear, but, I know people won’t care, even if I would leave early. Cuz, that’s how humans are, we say we care, but in reality, we don’t. And “if” we care, “when” we care, we don’t know what to do, we choose indifference, we choose our own priorities, we choose not to get involved because its problematic and we don’t know how to handle unknown problematic situations. We also don’t feel interested about stuff that don’t affect us, we choose ignorance rather than empathy, compassion, support, education. It happens to me too. I am selfish all the time, cuz its pure survival.
I wish that thing of unconditional love would exist, I know it exists, although is not perfect, but, I do have that kind of love. I just wish the world would be kind and more loving.
My head hurts, that is my brain aching.
My head hurts, that is my heart aching.
My head hurts, I wanna stop aching.
My head hurts, I wanna let go and be free of this thing.
My head hurts, please don’t hate me because of my curse, my demon, the son or daughter that I will never have but that I have to take care of for the rest of my life.
My head hurts, I don’t want to feel anything, I want to forget.
My head hurts, it stopped hurting… for now.
