going, going…

it’s that time again. i have been in the dark abyss for far too long. i truly am no longer safe.

i’ve tried. i really have. it is never my wish to be inpatient. it’s a terrible place to be in. and i never fail to feel like a failure succumbing to institutionalisation. but i have learnt that choosing to be helped is strength itself. choosing to fight to live another day, and many more to come, is courage. i’ve been on the brink of giving up, of dying, so many times. surely i can get through this again?

God gives me grace. but my flesh fails. and the depressed and suicidal mind is ominously strong. i can’t fight it myself. 

it’s time to surrender, to say “yes, i need help”. it’s especially time to take courage in the Lord, and accept that i can’t do it alone. it has to end here, at least with this escalation. 

let go, and let God, Steph. fight to live.

died a mini death

i’m tired. exhausted. the pain is getting to me all over again. it’s like a never ending game of “catch me if you can”. i’m always running. running till i’m breathless. the pain latches on like a parasite then, subjecting me to its whims and fancies. then i am so spent trying to make the pain better or go away. if not, i am stretched trying to be ok with the pain. i never really get to rest. not from these, not even from life.

i almost had a meltdown on Thursday. i had pretty bad sleep, pretty the same with the insomnia that has haunted me for years.  woke up at 8am. headaches crept in. trigger points started screaming. my shoulders are same old. i popped whatever painkillers and anti-emetics i have. i used the TENS unit and also the tennis ball. by mid-afternoon, i felt like i got hit by a truck. it was time to leave the house to see my anaesthetist. i literally had to drag myself out of the house. whenever i could, i’d try to curl up to rest my head. in the car, in the waiting room, in the bus or train. i felt like even my head had trigger points yelling at me to quell the pain.

my anaesthetist increased my pregabalin again to the max dose of 600mg. i agreed reluctantly because of the costs. (2 weeks of pregabalin costs $240!!!) we kept tramadol and etoricoxib at max doses of 400mg and 120mg. he finally caved in and gave me ergotamine although i don’t have true migraines (just really bad tension headaches that don’t respond well to tramadol).

i boldly asked him for trigger point injections beside the spine at the thoracic spine level. also, near my sacroiliac joints. he agreed, but i think it’s because he’s only injecting bupivacaine without steroids. he doesn’t like to use steroids on me anymore. because i was particularly sore and the jabs hurt more than usual.

i was very grateful to him. but my pocket bled from the cost of the medications. the pharmacist also gave me a scare with several of my pain and psychiatric drugs possibly prolonging my QT interval, because i already have a very slightly prolonged QT interval the last time i had an ECG. sigh.

i left the hospital still feeling like a wreck. i took the ergotamine almost immediately, with the rest of my painkillers. it took me about an hour to feel less uneasy. but 2 hours later, wham!!! i felt like i was hit by a train, and could drift off into lala land while talking to my friend. because of that i had to terminate the “dinner date” earlier than usual, and went home to be horizontal.

that was a true fibromyalgia flare, and gosh it was dreadful. feeling slightly better since. all the painkillers, ergotamine, sleep and being horizontal, helped. but the pain has killed my mood, and has robbed me of my energy.

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.

in te, Domine, speravi

“in thee, O Lord, have i hoped.”

i spent 3 days in sacred silence, in the holy presence of God. and the gifts i’ve received were plenty. my spiritual director led me towards gratitude- what i’m grateful for, for the past one year. with this in mind i spent time reflecting, meditating before the Eucharist, and was able to put into words 3 “things” i’ve been grateful for. (because there were too many, i grouped them into 3 themes. here goes!

1. Encountering God through people

i am grateful for the people in my life, and how God works in them and through them, and how they’ve been Christ-like to me. dynamics with my family have changed, and my parents have been trying to be more understanding and empathic towards me. though they may have slipped away from the Church, and though i pray for them to come home to God, i still see God working in them to help them help me in my recovery. i am also grateful to my friends and everyone in Sinners (my community). the past year has been extremely different, as i struggle in journey towards wellness and/or recovery. they made all the difference when they lent their listening ears, when they shared my burdens, when they lifted me up when i was down, and when they prayed for me unceasingly. for this i’m extremely grateful and edified!!!

2. “Weak made strong”

i am grateful for all that i’ve gone through the past year. not expecting that the year would be “that bad”, i am grateful that through the times i fell, i picked myself up again and again. of course it wasn’t by my own merit, but it was through the grace of God. in the times i’ve been self-destructive, and needing to go for surgery (so many damn times this year!), i came out of it with new insights. therapy has also gotten inexplicably better in the past year, after years of trying to tear the wall down between my therapist and i. he has empowered me with so much knowledge about why i am the way i am. my team of doctors and healthcare professionals have also been most supportive of me. the willing and intentional hearts they have treating me gladdens me so much. especially when i’m pretty much a “gone case”, and they have yet to give up on me! bit by bit i’m getting stronger, and little by little i find strength when i am fallen and weakest. “Weak made strong” was inspired by the bible verse:

“My grace is sufficient for you, for my power is made perfect in weakness.” I will all the more gladly boast of my weaknesses, that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities; for when I am weak, then I am strong.

2 Corinthians 12:9-10

3. Unmerited gifts from God

i’ve grown immensely in my faith, since returning to Church. i have also become more aware of what God blesses me with. love. faith. hope. joy. grace. mercy. forgiveness. acceptance. surrender. in different times of the year, God shows His love for me as is child, by giving me these gifts. at times, He simply strengthens the gifts, so that i may be made more aware. i’ve learnt so much about love. being loved, and loving others. i’ve felt deeply, though fleeting at times, hope that God grants me. hope that things will be better, for myself, for the people around me, for the world. i’ve been able to experience joy, despite the depression and chronic illnesses. i’ve received so much grace and mercy, in good times and bad. i’ve learnt better, to forgive, and to ask for forgiveness. i’ve witnessed acceptance, despite the multitude of rejections i face. i’ve learnt to surrender more and more, everyday, giving offering it all up to God. and in all of these, i experience faith in my Maker. and how He is unfailing and unceasing. relentless in His love for me. all of these, unmerited!!! how great is our God!!!

i didn’t know what i wanted out of the retreat, and what should be expecting. i only knew that in the spiritual drought i faced, i needed to spend alone time with God. with the help of my spiritual director, i have been made aware of my inner desires.

i thirst for God, and His graces. it’s that simple, but at the same time it’s tough to seek God in every moment of my life.

fiat. let it be done! i also long to say yes, just like how Mother Mary said yes to God. doubts may come my way, but i have to always choose to turn to God, and say yes to whatever He wills.

post-retreat is always the toughest. integrating what i’ve received during the retreat into my daily life, seems like an insurmountable task. but i will try. i will ask God to give me the strength and grace, to always thirst for Him, and to always so yes.

i can and i will!!!

stay, or not

it’s funny how i’ve received plenty in this spiritual retreat, and was given renewed hopes and promises as a precious child of God…

that now begs the question. should i fight to stay, even just one more time? depression can be so fucking cruel. what i have, what i have fought for, it robs me of them at the drop of a pin. there’s no warning sometimes. and it is these surprise attacks that can be the most dangerous. i am fighting against time and against my mind.

should i stay? or should i go? 

i’m too tired to fight. so i can only curl up under a thin blanket and sob. i should go. there’s nothing left to fight for. what i can fight for, i already have. 

who will win (or lose)?

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

mostly better

30 days of the Attack on My Left Leg (ALL) has just passed.

i made a resolve to be walking without my crutch this week, especially when i’m out of the house. i’ve had some near-misses, but after 4 days i am still unscathed. there’s still some numbness in my foot and my medial thigh. but the strength is better than it was. of course it’s still weak and i can’t even try to run for the bus or the lift. but the exercises that i did helped a tad. i have been having nightmares where my left leg has gone totally numb and motionless. i hope that will never happen.

pain-wise, my shoulders are better than when i was in the hospital. if anything, my lower back and my head hurt more than my shoulders. i’ve been able to cope without opioids. my anaesthetist didn’t know what to do with my back pain except to loan the department’s TENS unit to me to tide me over the next 1 month.

my mood on the other hand, did not improve with the increased lithium. sigh.