my day doesn’t start until i’ve downed the pills that are due in the morning. but that is only if i’m fortunate. sometimes, my day starts even before the previous one has ended. but what can one do? during these times, pain demands to be felt and/or insomnia screams at me to stay awake.
i am nothing without my painkillers. i take a lot of them on bad days, but painkillers, even if it’s just one type, are requisite everyday. i wonder why some people take issue with that? i escalate my painkillers in order of strength so i don’t take them unnecessarily. but that also means i experience pain longer than i should. there is the basic paracetamol (with orphenadrine, a muscle relxant). then there is an anti-inflammatory, usually etoricoxib (Arcoxia) at the highest dose of 120mg. if the pain isn’t inflammatory in nature (it means it’s not caused by my RA), i skip Arcoxia and go on to tramadol. with tramadol, i have to titrate the dose myself by 50mgs because it is vicious in causing nausea and vomiting. my anaesthetist has given me the go ahead to take the max dose of 400mg a day, with a good supply of the anti-emetic metoclopramide. even so, nausea seems to love me very much. we decided that 400mg is worth the risk of serotonin syndrome due to the psychiatric medications i take. oh well. the last one the list of course, is oxycodone (with naloxone, Targin). i avoid this at all costs because of it’s addictive nature, and how easy it is to build tolerance to it. there is one that is not a painkiller though- ergotamine+caffeine- but it helps with my tension headaches. my anaesthetist finally resorted to this after months and months of complaining that none of the painkillers help with the headaches. when i’m fortunate, i take perhaps only paracetamol+orphenadrine. on thereally bad days, i take ALL 5 types, and the anti-emetics. oh did i mention topical diclofenac? yep. when pain gets resistant to anything, i get jabbed into my head//back/joints with steroids and bupivacaine. this is the reality of living with chronic pain. and years into this, i’m already quite fortunate right now in that i don’t need to rely on daily steroids, and my RA drugs. my RA disease activity and fibromyalgia has evolved over the course of years. now fibro inflicts more pain than RA, and i don’t know if this is better.
the rest of the drugs are a must. why do people call anti-depressants happy pills? i currently take escitalopram (Lexapro) and fluoxetine (Prozac) for the my mood. do they make me happy? no no no. but to be fair, i’ve never not taken my anti-depressants for a continuous 6 years. i don’t know a life without them, and i can’t fathom it either. if these “happy” pills are helping me to function minimally, i dare not imagine having anything less. i also take pregabalin (Lyrica) to augment my psychiatric medications. it helps with perpetual anxiety. but actually more than not, it helps me with chronic pain. this drug i struggle the most, because of its cost. i’ve sacrificed half the prescribed dose most times because they cost too much, even with subsidies. and that’s a regret because at its full dose of 600mg/day, it helps a lot with pain. but that would cost $400-$800 a month for that. my parents nor i, can afford that. or let’s just say i think the money could be used better. i can’t live without Lyrica too, just like the “happy” pills. i also take lithium carbonate every night to augment my other medications. it’s made me less “murderous” (towards myself), and if even with it i could hurt myself so much, i can’t imagine the disinhibition if i’m off it. taking lithium is not without risk too. it can potentially affect the kidneys. the last ones would be the benzodiazepines, clonazepam (Klonopin) and diazepam (Valium). i can’t leave the house without Klonopin because it it what gets me through an anxiety attack. Valium, i’ve been taking for years to sleep. i’ve had insomnia for several years now. there were times when i was working living on merely 3 hours of sleep. it took me and my doctors years to reach this low psychiatric pill burden. and it hasn’t been easy. in fact it’s been more frustrating than trying to work with the pain pills.
and all these, are just pills to MANAGE my conditions. there is no cure. and this is the reality i’m grappling with. until now. do i not wish that one day i do not need to swallow any pills? do i not wish that i can stop having blood tests to monitor my blood and organ function? do i not wish that pain will cease to be my reality? and do i not wish that i can retain a reasonable amount of sanity (and safety) without any pills and ECTs?
i don’t sit around to wish for all of these to happen. there is no point, really. i just do what i can to inch along. and if these pills help me with it, by all means. however i still struggle despite and in spite of me managing my symptoms.
i still lie in bed, moaning and groaning, refusing to get out of bed because of the pain and stiffness. i still ditch my pillow because it sometimes causes headaches and neck pain. i still can’t sleep supine with my legs straight because it hurts my back big time.
i still get cranky when i can’t manage my pain. i still have my mood swings when i’m out because i get triggered, because i’m irritated/frustrated, or because i suddenly feel extremely upset. i still withdraw and isolate when i run out of energy keeping up a facade or with interacting with others.
i still cry in public, on bus rides, while praying in the adoration room or church. i still cry because i’m up to the neck with pain and depressive symptoms, and hope is not in sight.
i still do stupid things that land me in the medical and psychiatric hospitals. i still do these stupid things because physical pain is more bearable than psychic pain. i still do these things because i know there is no cure, no reprieve, and it’s been too many years.
i still mess up my eating habits because i’m huge and i still long for thinner days. i still mess up my eating habits because i am still obsessed with the numbers. and i still mess up my eating habits because there are a lot of people i know who have seen me at my lightest and i am absolutely grotesque now.
i still nap unnecessarily and/or excessively because i don’t get enough sleep at night. i am still perpetually tired and it’s my legit look every day. i still nap on the bus and miss my stop for far too many stops. and i still use my tiredness as a reason to get out of things and/or stay home, but only rightfully so, which not many people believe.
my friends from my community describe me as a “fighter”. i deny it and reject it, because i am merely doing what i can to survive. and it seems to be the only life i’ve known for a long time. there’s nothing “strong” about me- in fact i’ve been called weak, and i probably agree with it too. but perhaps i don’t give myself enough credit. a fighter? only by God’s grace.
recovery (psychiatric-wise) is not essentially the goal. it is the process of picking up myself which was shattered in to smithereens time and again. it is the process of learning to love the self and loved ones. it is the process of learning self-care. it is the process of learning that i deserve better, and not the shithole i put myself in.
acceptance and coping (chronic illness wise) is a daily fight. it is the process of understanding and accepting the pain, and embracing it. it is a daily fight to not let the pain define the self. it is a daily fight to hope even when there is none, because sometimes all we need is time and perseverance.
life’s a tough fight. whoever said it’s gonna be a bed of roses anyway?