Most of you will likely say that I talk about this too much and that I should just enjoy myself or something. Well, the honest truth is that I have nothing else going on in my life, as you may find out if you read on. So for brevity’s sake for those who don’t wish to hear about my daily struggles, I have placed the meat of this article beneath the cut, so those who are simply browsing don’t have to read it all. If you’re still there…
My quality of life with ulcerative colitis (hereon referred to as ‘UC’) is at a veritable all-time low. I am going to the bathroom literally day and night, averaging up to ten bathroom visits between 12am and 11:59pm: each visit is racked with intense pain and exhaustion. My bathroom visits interrupt everything, from showers to food preparations, to general life itself. I feel chained to the bathroom every moment of every day, and get nervous every time there is a painful tightening in my abdomen.
Because of the constant going to the bathroom, I am underweight (123 lb. was my last measurement, with the lowest healthy weight for me being 130 lb.), and I cannot eat enough food either to rebuild my weight or to give me energy. Everything sets off my irritated large intestine, it seems, especially those foods that are most beneficial to improving my health. With poor nutrient absorption comes deficiencies, and with deficiencies comes a host-load of other complications. I feel like Frodo walking through Gorgoroth, swatting away the Eye of Sauron, every time I stand up because of the fatigue brought on by anemia. My emotional state might even be compromised as a result of nutrient deficiencies (which did not exist prior to my diagnosis with UC, thank you very much). Worst of all of these is the severe lack of energy with which I am constantly plagued: because of this, I cannot bike myself, and therefore I am trapped at home (although the constant -and very real – fear of shitting myself while on my bike because of being away from a bathroom is also a deterrent), and worse yet, I cannot do any meaningful work.
The current medicine I’m on, if it doesn’t kill me, won’t take effect for another four weeks. But prior to any positive side effects, there are still quite a few negative ones that I’ve been suffering under, like possibly having these corticosteroids affect my mood. Worse yet is the lack of sleep that might be a cause of this medicine: someone my age should be getting 7 to 8 hours of sleep, and lately I’ve been getting five hours at the most. It might also do with the fact that my bedroom is blistering hot in the summer and fifteen feet away from a road that is STILL active at 1am in the morning, but I simply cannot seem to fall asleep and stay asleep.
What I have is not a life. It is an existence, one in which I am forced to continue, towards some mirage of hope that grows ever fainter with each passing day. Every time I reach out to someone for help and they do not answer, I am plagued by the belief that I have outstayed their cordiality, and, wearied by my presence, they have promptly ignored me. In such a state, I find myself even more isolated and bitter than before, losing interest in even my greatest passions. Writing and making music are burdensome to me. Life is nothing for me right now but pain and isolation, with little to no hope of improvement. I cannot lose myself in my faith, for my faith is weak: the gruesomeness of the crucifixion leads me to believe that Jeshua HaMessiah would have no sympathy for my suffering, as His was much greater than mine and caused also by my sins against Him.
If there is anyone who still believes, I ask them to pray for me that something changes. My health needs to improve, I need opportunities to be around people and forget my suffering, I need to see that God still loves me and cares for me, I need to fall in love with life again.