stronghold

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each morning, i wake up to a mood that usually dictates how the rest of my day goes. it usually isn’t a good one. and while i sigh, resigned to the day my mood has already condemned, i forget there is a greater Being in my life in the midst of it all.

He is my stronghold.

i sobbed in therapy last Wednesday, and asked rhetorically if i would ever see the light again. i was reminded gently by my Catholic psychotherapist, that recovery is about growth. that it’s a journey, not a destination. in my own true fashion, i retorted that it’s been so long. would i ever live to see the light?

the disordered mind rages and talks, asserting itself, while the heart aches. i feel too deeply what my mind thinks, and i can’t seem to help it. the mind never ceases to demand that i should despair. that i should go, when it finally gets too much. but the heart keeps fighting. fighting to cling onto Him, fighting to stay, fighting to tell the mind that i just need to hold on and trust. that i will surely see the light, if only i gave it more time.

back then in a matter of years, my doctor told my parents to be “mentally prepared”. i was dying then. and i was dying of sadness, of utter despair. i don’t think i know though, if i ever got better from that state of being. the mind still asserts that it is easier to go, while the heart fights and clings on tightly to the One.

i may despair or rejoice from day to day, or feel nothing at all. the pain from the despair might feel so visceral, and the tears may fall. everyday is a struggle to hold on, and i still don’t have the confidence to say that i will live to see the light.

but the Lord is my stronghold. what do i have to fear?

i will continue to trudge on, and i will continue to give thanks to Him for all that He has given to me. my heart will keep fighting to live, even if my mind says no.

 

wrong

i can’t quite articulate what it is that i am feeling right now. but i feel quite dysphoric.

it feels like everything i am doing is wrong, despite knowing very well that they are indeed wrong or dysfunctional. when faith meets medicine/psychology, i fail so miserably. i can’t seem to reconcile the both of them. and in the midst of existence, of coping, of trying to right my wrongs, i feel extremely fragmented. as i go around picking up the broken pieces, i also leave behind pieces of me that i loath. i am never complete, because there are so many parts of me that are wrong, so many that i want to abandon.

i am always told that my coping mechanisms are wrong.  i try and try so hard to make it right for so many years. but when push came to shove, i tumbled down another rabbit hole. now i’m still wrong. perhaps even more dysfunctional than before. and so, am I wrong again? oh yes I still am. i am trying, for all the wrong reasons, and yet i am still wrong. more wrong than ever.

imprisoned, i can’t seem to break free. i can’t seem to right the wrongs. i can’t seem to truly find myself again. and i can’t seem to regain this sense of normalcy in my life, because something is always wrong and/or dysfunctional. it doesn’t help that i am painfully aware of it. painfully aware that the sum of all parts of me is wrong. 

still i try, but sigh. it is tempting to give up.

ravenous hunger

all over again.

only the numbers matter.

almost forgot how it feels.

but i also forgot

how miserable it felt

to be imprisoned by

the very vessel

i was living in.

all over again, steph.

all over again.

 

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?

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

a little reminder from God

today, unexpectedly, God spoke to me while i was in church. while it might seem trivial, but i felt very strongly about it. it was also reminiscent of a similar situation that occurred a few years back when i tried feebly to return to church (Novena Church).

at the end of the Mass, an announcement was made asking for a doctor as someone has fainted. i saw someone responding immediately, and guessed he was a doctor. i went looking for where that person might be once the priest exited. it happened that she was a friend of a friend’s. while she did not lose consciousness, she got physically very weak. the doctor asked her a series of questions, and what stood out was her history of gastrointestinal symptoms. because he was a male doctor, he couldn’t do a physical examination on her. he kept asking her to press on her abdomen to see if it elicited any pain. till that point everyone else, including me, were just bystanders. i wanted to let the doctor do his thing. but by then, i stepped in, told the doctor i was a registered nurse, and asked if i could help palpating her inguinal area. it was evident that it was difficult for any lay person to be palpating in the right regions, and with enough depth. he was glad someone could actually properly palpate her inguinal area. pain was elicited when i palpated her right inguinal area, but nil for her left side. it confirmed his suspicion of appendicitis. she was shivering too, despite a sweater over her. she told me she was still feeling cold, so i took off my thick sweater and laid it on her. i did this despite knowing my scarred arms would be bared for all, even the doctor, to see. but nothing was more important than the wellbeing of a patient, that i knew. we stayed with her till the ambulance came, and i reported the findings of right inguinal pain to the paramedics. i stopped short of reporting rebound tenderness, although that is characteristic of appendicitis, because i did not palpate that. but seeing she was in good hands, the doctor and i left.

throughout the whole situation, and after that while i was in the adoration room, i cannot help but feel a stirring in my heart. again it was the same stirring i got a few years back. i felt like God was reminding me of what He first called me to be- a nurse. whether or not it was a push to return to nursing, or if it was a reminder of my identity as God’s child and my gifts that were God-given, i do not know. but i know this will linger in my mind and heart for a long while.

i’d give anything to go back to nursing, but i’ve tried very hard and subjected myself to a lot of scrutiny and “abuse” because of my mental illnesses. it remains to be seen if i will return to nursing one day. maybe one day i’ll be well enough to go back, barring my scar-laden arms.

thank you Papa God, for reminding me of who i am, and the fire that burned so brightly in me once upon a time. this calling is something i can never forget, and will continue to pursue, even if i’m studying psychology right now.

being tested

once again, i’m being tested. and this time’s proving to be really difficult.

i’ve lost faith in the mental healthcare system. i should have, a long time ago, actually. times like this, the only advice is to go to the emergency room to likely get admitted. my reluctance to do so most times, is because the team in the ward is literally helpless. they can’t do anything for me. i am there only because it’s a safe environment. but i need more than that and my usual weekly therapy. additionally, the team in the ward doesn’t know much about me. me, and my psychiatric history, is extremely complex. and they haven’t taken the time nor effort to know and understand me. besides, the ward is a terrible place to be. it is not in the least conducive for recovery. so what am i to do?

my psychiatrist can only see me early December at best. and he’s already bending the rules to get that for me. while i am grateful, it’s still a long way to go, and despair is all i’ve got right now. i just saw my therapist yesterday. did my psychiatrist really think therapy would make things better for me? sometimes it doesn’t. sometimes it is triggering. sometimes i stay status quo. rarely i move forward.

i know things are really bad when the tears fall in public. even the realisation that i am crying in public, makes it worse. i don’t like finding myself in this position. yet i feel extremely helpless. i’m at a loss.

my sisters-in-Christ have been trying really hard to support me. they’ve been trying to get me to keep the faith, and rely not on myself, but on God. times like that, this is most difficult. i guess all i can do now is to keep trying. because if i don’t, i’ll be gone from this earth.

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit which has been given to us.

Romans 5:3-5