Tag Archive | fighting

tough luck

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?

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what you don’t know

  1. RA and fibromyalgia changes a person. living with chronic pain does that to you. it makes me embittered and disillusioned with life and the healthcare system.
  2. Chronic pain means that i carry a pouch of medications in my bag always. Painkillers that go up the spectrum in its strength. Topical painkillers. Anti-emetics in case the painkillers make me nauseated. Anxiety also means i carry with me benzodiazepines (usually clonazepam). Without this pouch when i’m out, i’m practically nothing.
  3. RA is an autoimmune disorder, and it can only be managed (put nicely, put in remission), never cured. And there was nothing i did to induce such a chronic and debilitating disease. Mine started when i was merely 1 years old.
  4. Fibromyalgia is a legitimate illness. It is not a diagnosis placed on a person if a doctor can’t figure out what a patient is going through (i.e. garbage diagnosis). No my pain is not psychosomatic. No my pain is not because i’m doing everything wrongly (posture, ergonomics at school/work, the way i sleep etc), No i’m not lazy, i’m just perpetually exhausted/fatigued despite the amount of sleep/naps i get.
  5. I don’t find excuses because of my illnesses. I try my best even through the pain and the exhaustion. Heck it even takes courage to admit that i am giving something up, or if i have to say no, when i feel my disease involvement is really being tested and exacerbated.
  6. i have chronic depression, and it happened (and still persists) not because i was weak. it started in 2010 because i gave too much of a damn about something- something that i was passionate about, and was good at, that pride took over. at that point my eating disorder was in full swing for a year already, and it didn’t help with the stress and pressure i faced.
  7. i fight. and i don’t stop fighting. i fought to finishing nursing school, and fought to finish it well. i fought at and for work as a nurse. i gave up my career as a nurse because undue pressure and sanctions were placed on me just to validate my license. it triggered me everytime i had to go down to board’s office to submit the letter from my psychiatrist.
  8. the people who are in the caring profession are the very people who perpetuate the stigma of mental illnesses. this was something i could never understand.
  9. i’ve lived in hospitals- medical and psychiatric- for a total of nearly 3 years. it takes courage to go in, to admit that i need help. it is not attention-seeking behaviour. and to be honest, all these time in hospitals are the ones that kept me alive.
  10. and yes, as much as it seems the opposite, i am fighting to live. i subjected myself to 63 sessions of electroconvulsive therapy (ECT- in layman terms, electric currents that runs through the head), because i struggle with chronic suicidality. if i seem forgetful, this is why. amnesia is the primary side effect of ECTs.
  11. i’ve been labelled as the “worst case” my psychiatrist has seen, “the most difficult patient” my psychiatrist has had. 70 over sessions with my psychologist yielded almost no effect on my mental health. so pardon me if i think i am a hopeless case.
  12. people have asked it, and implore you not to ask it nor even think about it, why i am “still like that”. do you actually think any sane person (yes i am very much sane) would want any of this bullshit? if i can have it my way, i want nothing of this.
  13. i am always fighting to manage my conditions, and that includes working towards recovery. sometimes i am able to muster the strength to stay relatively well (usually from extrinsic motivations). but it doesn’t mean that i’ve done it before, that it cann be replicated. circumstances are always different. and not reaching recovery doesn’t mean i am weak. it means i’m still fighting. whether it is me managing my symptoms because that seems to be more important at that time, or whether it is me fighting my demons because it feels like i’m well enough to work towards recovery.
  14. i am always seeing doctors, and again this is not attention-seeking. i see a rheumatologist, a pain specialist, a psychiatrist and a psychotherapist (who’s also a psychiatrist), with the occasional visit to a gastroenterologist, a nephrologist, a neurologist etc. i am for the record, not the healthiest person around, and no i did nothing to deserve anything that warrants these visits.

  15. when i cancel on you, it does not mean i’m not keeping my end of my promise. it usually means i’m exhausted through and through, either from the disease process of RA, fibro, or even depression. or it means my mood has plunged, and/or i am crippled with anxiety that i can’t leave the house.
  16. when you see me smiling and laughing, talking (sometimes loudly), walking with normal strides with my head held up, 99% of the time it is a facade you see. this facade is quite true to my old self. and it takes immense energy to keep the facade up.
  17. when you see me turn a little quieter, becoming more reserved and isolated, head down, and walking a little slower, it means the energy that’s keeping up my facade has run out. it means you are seeing a more genuine side of me, and honestly, i’m not fun to be with once this occurs. it can dampen the spirits of everyone, and i don’t mean to do that.
  18. i am easily triggered. when i see images or hear about things like suicide, means to kill oneself (like ropes, pills etc), and all, i immediately withdraw. it can mean that self-harm will come later, but that’s just the way i am. i am extremely sensitive.
  19. when i bare my arms to you, it means i trust you enough not to judge me. i am not proud of my scars. but i don’t want to tie it so much to shame as well.
  20. it’ll be difficult to accept me because of the way i butcher myself. but i always hope people can understand that self-harm is my way of coping, of self-regulating. it’s just like how people turn to alcohol, drugs and ciggs. and if you have questions, i really don’t mind being asked, as long as it is done tastefully.

it’s difficult for people, and even my doctors, to see how pain is inevitably intertwined with depression. everyday is a battle for me. i start off my day downing anti-depressants and a cocktail of pain medications. it’s a judgement call to make, for how much pain medications i need to start my day. a painful day makes for a very moody and/or angsty day. on the other hand, there is no happy pill. when i’m anxious, i pop a clonazepam, but it doesn’t make it go away totally. sadness, despair, distress and worry usually accompany anxiety. and if i can, i lie down, hide under a blanket, an try to sleep it off. if i’m out, i try with all my might to get home to do precisely that- hide and sleep. the worst is when my mind decides that my life is not worth living. there is no anti-suicidality pill. there is only self-injury and ECTs. i don’t hurt myself for the sake of it. ironically i hurt myself to stave off the suicidality (at least when i’m not inpatient), and it does help. it’s difficult to believe it, but it really does help. it helps me to at least live till tomorrow. and sometimes that’s all that is important right?

everyday is still a day of self-discovery, of learning who i am and what i am. everyday is a chance to be stronger, more resilient, more accepting, and a chance to desire living instead of dying.

my friend from my community described me as a fighter, as do many others, in different ways and words. i constantly deny them, because depression tells me everything otherwise. but for the past few days, i’ve thought about it. if i hadn’t fought, even as a child with undiagnosed juvenile RA, would i be here? if i hadn’t fought through the pain even as it progressed into adulthood, and then also fighting with fibro, would i be here? if i hadn’t fought with depression and bulimia, would i even still exist? it answers it all.

lastly, without my faith in God, i am nothing. He was the one who carried me through all these years, giving me the strength and courage when there was none to go on. He carried my crosses (which are my burdens and struggles) with me, and never left me even when i turned the other cheek. what can i say? God is good. God is Love!!!

The Lord will fight for you, and you have only to be still. -Exodus 14:14

i will not settle

in the past 5 years, many people have told me what i cannot do, many of them have this tendency to decide what should be done to me, and many liked to point out my shortcomings, even though it is glaring that i am aware of it myself. i am turning 26 this year, and it still goes on. i have given in, caved in, due to the pressure given, and the insistence that they know better.

i have let people disparage me, decide that i should stop work, and tell me that i am unfit to work although i have been cleared by my doctor. i have let people bring me down, and oh i let them do so, and others have given me grief for doing so as well. i have been told i cannot do this or that, because my depression renders me “weak” and a “liability”. i have let people lock me up, making damn well use of the Mental Health Act. i have allowed people to tell me in my face “why are you still like that?”, and tell me the precedent of my depression doesn’t seem to warrant such a long and severe bout of depression.

i am asked sometimes why i have such a low self-esteem. i tell them that it has been low all the while, but in the past 5 years, i have been trampled on time and again by people. and it has been a very vulnerable period for me. so tell me again. why am i down, and why is my self-esteem so low? why is my recovery process so slow? why am i the way i am

most times i let them get to me, because i believe them while being extremely vulnerable. but was there ever any basis for such words? oh no, i don’t think so. the only basis is that of stereotype. depression just seems like such a vulgar word that it doesn’t call for any empathy. and it seems rather apparent that tearing a person with depression apart is pretty apt.

after my discharge on Friday and finding myself fighting to not go inpatient again, i realised that i have found some strength in me to defy what people like to condemn me with. perhaps a part of me is tired of just going with the flow. or maybe i’m just filled to the brim with all these disparaging.

i simply will not settle, from today onwards. i will fight, and i will damn well talk them down, if they were to even begin to mutter a word about me. and for those who have already done damage (95% of them don’t even know that they’ve trampled on me), God bless you, and i don’t have the space in my life to accommodate you.

my incompetence as a being

when you have judged my incompetence as a being because of the depression, eating disorder, the scars i have, or even RA and fibromyalgia, it opens my eyes to who and what you really are.

i’m fighting many battles that you don’t have the privilege of having, thank you very much. i’m holding on very tightly to my calling and passion when there are people trying to pull it away from me. i’ve lost and i have loved. i try every single second to breathe and be ok, either physically or mentally, both sometimes. and i am clinging onto my dear life- it’s not a hyperbole by the way.

so when you do that, i just think, are you really worth my time? my attention? my care and concern? love even?

my incompetence as a being- i came up with this term. no one said this to me. but things that people do or say, over the years, just screams in my head these haunting 5 words.

FM: how convenient

i think fibromyalgia (FM) can be a convenient diagnosis. at least if it’s with RA.

fatigue? oh it’s your FM. pain? it must be your FM. pain in your joints? i think it’s FM, more psychosomatic because there’s no redness nor swelling.

it’s a damming piece of diagnosis and ICD code. i think July was the culmination of the past 3-4 years trying to ‘fight’ with my rheumy regarding pain that wasn’t resolved. when she finally slapped it on me that it is more psychosomatic and like a chronic pain syndrome, i feel like she could finally breathe. countertransference you know. and perhaps one could say i was “thinking too much”.

how do  i quell the inflammation? if i need to go back and see her (i know i said i’ll divorce her, but…) i can tell her about my adventures the pain specialist who was so kind, with trigger point injections, IV parecoxib, S/C oxycodone, optimized gabapentin, pregabalin, tramadol, the tale of contraindicated celecoxib, the REAL truth about my sacroiliac joints. but what will she say?

will she say in my face yet again it’s your fibromyalgia? even if i think my joints/tendons/bursae are inflammed? i would guess then that it is my irrational fear that my RA will not be validated anymore.

the thing is, i may not need that validation more than my RA does. nothing is only fibromyalgia. RA came first, and there is nothing treating RA now. my rheumy tells Dr S to try his best to co-manage. my rheumy tells my pain specialist to try his best to co-manage. she tells me to try my best. WE ARE ALL TRYING OUR FUCKING BEST HERE.

so i hope if i do find the courage to go back and see her, she will TRY HER BEST for me again. because this state of being with RA won’t do. the flares, the fatigue, the morning stiffness, the malaise…

😦

relapsed

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– Viktor E. Frankl

i’ve been struggling for about a month or so, fighting with my demons, with what seemed like an impending relapse. try as i might, i’m not the strong that i should be yet. i’ve been going on a downhill while desperately retaining some functionality that is demanded of me, with what is thought to be my worst yet by my treatment team. you know it must be true when several people who haven’t seen you in awhile look at you, and comment that you look terrible and mustn’t be doing well.

i told Dr S i regret even going to the Eating Disorders Unit to have my problem treated, because it became the catalyst for this relapse. that it fuelled all the existing problems, threatening to make them even bigger problems. but i think he told me not to regret it. that i tried and tried hard enough. that it is with such slip-ups that one learns life lessons.

i am expected to show up inpatient next Monday, just so that they can stabilise me by running currents through my head (all over again) before i disappear from the face of the earth (oh i’m so capable of that). i just did one, but it was sorely inadequate as deemed by Dr S and myself.

aargh i hate this, and i hate myself.

i give up

i lied. i did nothing.

true enough, nothing was changed when i saw Dr S. i begged him to do something, and he tried. we went through a list of possible medications that would help. but we have exhausted the list, and there seems to be nothing more that he can do.

i guess my reaction, or rather the lack of it, was just resignation.  i give up. how else, may i ask?

still fighting my demons. i’ll be damned. i am already, anyway.

there is a reason why i feel relentlessly hopeless.