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too much

somehow it keeps piling on, as if i had the capacity to carry them all. i don’t, and i can’t.

  1. depression relapse (acute on chronic i guess???), but the ECTs did not help and i am again left to wonder if i can ever regain even a bit of normalcy.
  2. the stress from school is really breaking me apart. a dissertation, its literature review and its quasi-experiment (i still need 10-20 more participants by 4th September). plus 3 papers due from now till September 15. what would i do without Ritalin???
  3. Clover, our Pomeranian who was 13.5 years old, passed away from cancer (Transitional Cell Carcinoma). Our family was so broken by her death, and although it’s been almost 4 weeks since she left, we are all still grieving and aching. We were just glad she spent her last moments in the cradle of my brother’s arms (her favourite human and default owner). 😥
  4. Acute bilateral shoulder flare RIGHT AFTER i saw my rheumy. Arcoxia 120mg does NOTHING for the inflammation and pain, and it has been an excruciating 2 weeks. My anaesthetist is away, but i am FINALLY seeing his colleague in 2 days. Although i think i short burst of pred will just do the trick. I really need some relief. Fibromyalgia has been giving me signs it’s gonna be flaring soon too.
  5. the coping mechanism i’ve known so well for 7 years has been taken away from me after an event and admission. there wasn’t even a plan to cut down or something like that. cold turkey. it’s not going to end well, i assure you.

 

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i love you, and i miss you so much, Clover… run free and bark as much as you like ok? i thank Papa God for taking away your pain, for giving you comfort, and for holding you in His arms. i love you to the moon and back, and i’ll see you on the other side, my dear doggy…

 

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going into the New Year…

i apologise for the lack of updates. it’s been rather mad since the last time i posted.

i’ve fought continuously against the deep anguish and pain within me since Christmas, making a decision to repair my arm which i’ve cut up, then keeping myself safe for awhile. i managed to leave the hospital to spend New Year’s Eve and New Year’s Day with my family and friends. but till today i still wonder if i should have left the hospital. i was still drowning, and nothing was making it go away.

i attended a 5-day retreat in the first week of January. this retreat has been purported by most to be extremely life-changing. and although i went into it rather apathetically, i held high expectations. instead the first 3 days were a complete nightmare. i had strong urges to hurt myself. i had strong urges to fly. i was most atrociously physically violated (sexually too if you asked me) during praise and worship. of all 15 confessors, i was assigned to the priest who hurt me deeply (which led to a 3rd degree burn that had to be grafted; but i’ve forgiven him already) 1.5 years ago. i wanted to pack my bags and walk out of the retreat every single moment of the first 3 days. but i thank God for His love and grace, for sustaining me through each and every moment. i was also blessed that a brother from my community journeyed with me. the next 2 days were better, although i remained in the shadows of the “trauma” from the first 3 days. i encountered God and the Holy Spirit during the praying over and outpouring.

to be honest, i felt like God has washed me clean of my sins. it felt like He reached for my hardened heart, softened it, and emptied out my heart of all the pain it carried. it felt like i was going to be starting on a clean slate. tabula rasa. Mother Mary also appeared to me (incidentally i was standing in front of the Mother’s statue during the praying over) after i had fallen. She had reminded me of her fiat– the fiat that kept appearing to me since last year. her Magnificat also resounded in my head. to me, there was no doubt that all these experiences lead me to the very heart of Jesus and Mary. ending the retreat, i came out of it more confident in God’s mercy, and more convicted to the obedience that Mother Mary displayed. it was not a surprised that during the last talk by our Archbishop led me to this bible verse:

I will not leave you desolate; I will come to you. -John 14:18

coming across this verse, i was even more assured that i could trust in God in my worst times- times which would have me extremely despaired and anguished. this, together with my encounter, would become my anchor for which i would hold on to. going back to the real world would mean that i would be continuously challenged and tested. and i felt extremely blessed that even though the retreat wasn’t as life-changing as it was purported to be, i came out of it with this anchor. this knowledge and this trust that i have in God.


so for the past 1.5 weeks (post-retreat till today), i struggled very much physically. i’ve been extremely fatigue, and despite so, insomniac. out of the 11 days, i’ve left the house only about 4 times? my head constantly hurts. my entire back hurts. i’ve had repeated bouts of nausea and/or vomiting. i’ve spent hours and hours horizontal on my sofa. i’ve indulged in so much caffeine but it doesn’t work. it frustrates me because i don’t know where this fatigue is coming from. RA, fibromyalgia, and depression all cause fatigue/lethargy. i feel like if i knew which was the source, i could better manage it. but who am i kidding?

and so i will continue and take each day as it comes. i’m not in the best of moods, i’ve been rather cranky, i’m perpetually tired, but eventually one of these will give. i will leave you with a part of a prayer a community friend said for me on the 3rd night of the retreat (it’s slightly reworded because my failing memory can’t remember the exact words):

“every moment is a new creation in Your hands…”

it’s short, yet it holds an extremely beautiful meaning, and encompasses so much hope!

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

triamcinolone in my shoulder!

saw my rheumy today. i haven’t had much flares since i last saw her a little over a month ago. the shoulders, though have never failed to persist in hurting. it’s presumably the same ol’ tendinitis and tenosynovitis.

both inflammatory markers were very slightly elevated. ESR was 28, and CRP was 25. there didn’t seem to be a reason for them to be elevated. i haven’t had any infections lately, nor active flares. so rheumy and i talked about getting an intra-articular steroid shot into the subacromial space, since it’s the only thing troubling me. i remember deciding with her and my anaesthetist that i should stay away from the intra-articular steroid injections because i’ve accumulated a very high steroid load last year, leading to a lot of weight gain without having much benefits with my pain management.

but since i haven’t had any since the end of last year, we decided to give it another shot. we chose the left shoulder to jab because it has a smaller range of motion. i’m letting it rest today, then tomorrow onwards i have to go back to doing my strengthening and ROM exercises. right now, post-injection, it’s flaring up a bit. not unusual. it’s always happened with any joint injections.

seeing my anaesthetist 2 days later. if my left shoulder gets better in these 2 days, i may ask him to jab my right shoulder. we’ll see how.

right now though, my RA is pretty quiescent. not complaining. in fact, i’m actually very grateful to God for this. i’ve seen worse flare days. so it’s quite a respite. but i’m having more physical problems with fibromyalgia and headache, and i’m taking a shit load of painkillers everyday. am aware that i need to invest in a good TENS unit. but i’ll wait till i see my anaesthetist.

when i can’t, You always can

i’ve been thinking a lot these days, all the while having thought-provoking conversations with people from my community.

it’s been 6 years since i fell into depression, and it’s also been 6 years since i hung up my pointe shoes for good. to say that the last 6 years was difficult, is a sore understatement. i’ve always found it hard to get back on my feet. each time i seem to be grasping recovery in my hands, i fall even harder. my doctors can only conclude that i am severe case who can’t seem to remit or get better.

loss. loss is something i experience a lot, and I have been unable to properly grief each time. i’m still hung up about each and every loss that i’ve experienced, that i almost seem to live in the past. the what ifs, the could’ve beens, the should’ve beens.

the loss of giving up ballet due to RA’s joint involvement, and the inability to even try to go back to class because of my deconditioning from prolonged hospitalisations and the breathlessness from long-drawn anemia… i never got over that. and now even though i could go back to class, the recent mysterious attack on my left leg has rendered my leg almost useless for ballet. it never really ends, does it? this was one of the two passions in my life, and giving it up hurt plenty.

the loss of my sanity in 2010, my fall from “grace”… i never got over all that i’ve lost from that fateful day when i finally called it quits and downed all those pills. i continued losing a lot more because i could never reconcile with myself the fact that i am imperfect, flawed and only human. i continued to battle with myself, against the words of others and the self-deprecating beliefs about myself. and right here right now, i’m still clawing my way up the deep dark hole that i fell in.

i lost my calling. the calling which I was so passionate about. even though i was the one who chose to give up nursing, it still aches so bad. but between getting hurt by the people around me as a nurse, and hurting because i left, it’s easier to choose the latter. nursing is unfortunately my only other passion that gave me some semblance of a meaning and purpose in my life. it’s been a year, and although i moved on to study psychology, i’d return to nursing in a heart beat once my doctor gives me full clearance.

i lost my freedom to be free and active. the fatigue from RA and fibromyalgia can be very debilitating, and it’s something very few people can understand. the fatigue, amotivation and insomnia from depression piled on top of it. and then i gave up trying. long days overwhelm and tire me. physical activities scare the shit out of me. crowds and excessive noise drive me crazy. the hot weather test me each time i step out of the house. if i could i’d curl up at home and watch the telly. and that’s what i’ve been doing. commitments are hard to maintain because i’m not the energetic bunny i used to be. i’m now the lethargic sloth who’s tired everyday and tries all ways and means to stay at home and not practice any self-care.

i lost my ability to be fearless. to be uninhibited. all the what ifs hold me back and hold me captive. tomorrows are never certain. i could be all fine and dandy today, tomorrow i could be a disaster. today i could be walking, tomorrow i could have one limp leg, or joints that are angry. everyday is a surprise. on one hand my life is a monotonous unending cycle. on the other hand it hits me like a hurricane each time i get up, or with each conversation i make. nothing is ever stable. nothing is static. i can’t be fearless. i live in fear, inhibited by the memories of past.

i essentially lost myself. i lost who i used to be in its entirety. how do i get over that? how do i tell myself “i’m sorry you had to lose so much, but look forward and not back. live. your future is in your hands.” it’s something i’d tell someone else, yet not to myself. reconciliation has never been more difficult and under-managed. the Steph that is now, is not the Steph who lived till 20. that Steph died. and me, this Steph that i am, has been damaged, and broken, shattered into smithereens, put together haphazardly with craft glue, scarred, and yet still on the verge of falling apart. so flawed. so imperfect. so damaged. so unloveable.

this is not a pity post. i put it here because i know i would forget this aspect of my insight into myself. i want to reclaim back my life. yet what tugs hard at me is the “NO”, because i’ll fall and get hurt again. how do i ride against the tide and the waves physically? my body feels extremely incapable of doing anything physical without having any adverse effects on my body. and how do i stop looking back, and look forward instead? how do i forgive myself for going savage against myself? how do i forgive the people who took it too far with words?

at the end of the day, no matter what, it is always God whom i should turn to.

“when i can’t, you always can.” -Kari Jobe

tough month ahead

it’s been 23 days and my leg is not better. let’s just assume it’s never going away, or that it’ll get worse. tampering my expectations.

i got to see my rheumy today. apologised to her about needing to slot in today because of what the rheumatology team did when i was inpatient. but she cleared some things up and also got a picture of the shit i was and still am going through. firstly, MRI results for my shoulders show bursitis and tendinopathy while on etoricoxib 120mg, but DMARDs still not called for because of its chronicity. however she is still going to be discussing my MRI results with the radiologists. secondly, it’s very rare but RA can involve the nerves in the way it did for mine (other than peripheral neuropathy) but it would show up on the nerve conduction studies (which nothing did). thirdly, we don’t know what that odd thing my leg does  when i try to flex it with my foot pointed when i’m lying face down. she has to ask someone else about that too. she’s showed more compassion today, which was helpful because i’m not in the best of my moods today and i was entirely sleepless last night.

hours prior, i saw my psychiatrist. he upped my lithium. it only can mean one thing. doing poorly. it has been some rough 2 or 3 weeks. so the order has been given, he has been pre-empted that the hand tremors will worsen like it always did when we tried it, but there is a chance it’ll help me as it has in the past. how else?

another research methods module to frazzle me further this month. it’s gonna be a tough August, Steph.