10 years

seeing my anaesthetist today brought back  many memories. the waiting, the feeble attempts to get my point across to the doctors, the plucking up of courage to ask for something, the decision to say yes to another medication, the sigh that comes with resignation…

it’s been 10 years since i begrudgingly said yes to my first diagnosis of RA and the treatment that ensues. the fuss over waiting times, doing blood tests and unpredictable results, imagings, complications, ever-changing prescriptions, side effects, new symptoms, rehabilitation, and the costs of everything. most of all, it is the constant struggle to carry on. but God gives me the grace to trudge on, to embrace the pain as it continues to keep me rooted to the truth in the cross. and most of all i am reminded to be gentle with myself. nothing comes out of being hard on myself, except bitterness and frustration. in the midst of these all, i am called to say yes always; to bear this cross with love and gentleness!


i was restarted on topiramate again to help with the constant tension headaches. bummed that my pill burden cannot be lessened despite my efforts in the last few years. i asked for trigger point injections in my back because it’s been killing me for many weeks now. so he gave me 2 bupivacaine shots. i was asked to try accupuncture and of course physiotherapy. couldn’t escape the question about exercise.


i can’t seem to escape the pill burden that’s haunting me for the past decade. i’ve tried deprescribing over the last few years, and while i’ve succeeded sometimes (especially with DMARDs), it somehow gets undone insidiously:

  1. Paracetamol+orphenadrine
  2. Etoricoxib
  3. Tramadol
  4. Metoclopramide
  5. Ergotamine+caffeine
  6. Topiramate
  7. Escitalopram
  8. Lithium
  9. Clonazepam
  10. Quetiapine

it still stands at 10 now, the number of prescribed drugs. and it drives me mad. but it’s ok; i’ve had worse. once again i am called to say yes to this struggle that comes with the cross i’ve said yes to carrying.


all these years struggling with pain has hardened my heart and made me bitter. i guess it’s time to reexamine how i will be coping with something that is inevitably a permanence in my life!

failing flesh

we’re only 1.5 months into 2017, and i’ve already had a taste of what this year might be like for me. although nothing actually changes when we left 2016 behind, there is always this inevitable desire of better year ahead. is there actually anything wrong in hoping? i guess not. but it would be prudent to temper these hopes with some realism.

it’s been quite rocky since the start of the new year. when i wasn’t feeling too deeply (emotionally or physically), i was feeling nothing at all. the madness here is that i was never content with either. when i sat in the darkness of melancholy and physical pain, i craved for reprieve from the sadness and pain. and when i swung to the opposite end, feeling absolutely nothing at all, neither sadness nor pain, i lamented that i needed to feel something. i do realise this is me in the entirety in of my world that can only be black or white, and either-or. i also do realise i need to gain a footing on middle ground, of a world that can embrace grey. but again, this is a lesson that i will be learning for the rest of my existence.

as fibromyalgia flares come and go, and as i struggled with the difficulty getting through a day, i wonder how i made it through 2 decades of RA. i wonder what gave me the strength to trudge on then, what made me plainly grit and bear. and then i wonder if i’m really just tired of fighting the pain. although my RA is largely quiescent now, the occasional joint flares do remind me that i might be so lucky to only have to fight against fibro. perhaps i can seek some comfort in that? but however much i’ve settled with the chronicity of pain in my life, i never get used to it. there are all the pain pills, tennis ball, TENS unit, and injections to help me cope. there is also a certain sense of acceptance that comes with unrelenting pain that doesn’t wane. but i will never get used to it. pain always demands to be felt.

also as sadness waxes and wanes, i wonder how i got through the last 6 years. there has never really been a time when i can honestly say that i am “good”. it has always been either a “bad”, or an “okay”. my doctors and i have been trying every damn thing there is to augment the perpetual depression. anti-depressants, mood stabilisers, anti-psychotics, benzodiazepines, therapy, ECTS… i’ve had better days. but more than that i have days when i am entirely filled with sadness that i am driven to either mutilate myself, or fantasize about and/or plan to completely annihilate myself. as i constantly question, i wonder if there will be a day when i can truly say that i am “good”. because at this rate i am going, together with chronic pain, i think it is likely that i will expire in years to come. there is only so much one can take. i might accept that i have to live with RA and fibro for the rest of my life, but i do secretly harbour this hope that one day, i will be free of the chains of these mental afflictions.

i can’t do any of these alone. human effort will not suffice, as i have come to appreciate over the years. i can only surrender everything to God, do my best, and let Him do the rest. even these however, can be difficult to do. i am constantly tried and tested- my faith, pain, mood, triggers, urges, life- and all i can do is to hold on tight, pray, and carry on.


seeing my anaesthestist, psychotherapist and psychiatrist next week. hoping to get some bupivacaine jabs in my back and right knee. expecting quetiapine to be upped to 50mg, and cutting out escitalopram completely because it is doing nothing(i was only supposed to cut 1/4 of it, but i was too lazy to half the pill so i cut down 1/2 instead).

 

fibro flare

i’ve been struggling for weeks now, with back pain, headaches and fatigue that fibromyalgia brings. i managed the pain with paracetamol+orphenadrine, etoricoxib and ergotamine. my pain management wasn’t optimised because i loathed to take tramadol. the nausea it brings causes me plenty of grief.

the back pain (entire back) didn’t improve with rest. in fact, it felt like being horizontal made it worse. what sort of back pain doesn’t improve with rest??? i wrestled with the pain, resting nevertheless, and taking the analgesia. the pain worsened the insomnia, which in turn also affected the pain. what’s worse was that my mood has been poor. i am unable to identify if the poor mood triggered the pain, or vice versa. living with these chronic illnesses, i usually find myself entangled in its midst, never really knowing which was the real trigger.

last night however, i plucked up the courage to take tramadol 100mg with metoclopramide. the pain improved a tad, and was able to sleep better. then i realised i’ve been so silly omitting tramadol and causing unoptimised pain relief, just because i was afraid of nausea. i took tramadol again this morning. the pain continues, but it’s much better. knowing that i can still take another 300mg of tramadol for the rest of the day, gives me some relief. fibro can be a real pain in the ass, but oh well.

the low mood and insomnia will go on, but lessening the pain itself makes the struggle easier. i’ll let my psychiatrist take care of it!

God works in His ways, as long as we surrender to Him!!!

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!

it feels like i’m held underwater, my hands flailing in the air as a hand grasps the top of my head and holds me under. every time the hand releases and i manage to gasp for air, i promise to be good. in that fraction of a second i promise that i will be better. the oxygen i manage to take in feels like reprieve, like i am given a chance again. but very soon after i am dunked again, like a punishment. wasn’t good enough. didn’t try hard enough. water enters my lungs, and i’m drowning once again. the cycle has never ended. maybe the intervals between are longer at times. but i still drown each time i’m “weak”, each time i’m “not good enough”.

one day, soon enough, i’ll truly drown. there is only so much a body can take. and there’s not much left to take.

 

 

never letting go


(can’t draw to save my life, but this will have to do???)

in the flurry of school assignments, examinations, serving in a retreat and nursing an infected wound, i forgot about what it means to be a child of God, and how loved i truly am.

yesterday, i had a proper chance to sit in the adoration room and talk with God. no distractions, nothing. just me, my rosary, and God. after lamenting about being tried with spiritual attacks during intercessory sessions and Mass, i found it in me to still thank God for what He has given me. the very reason why i would be attacked would be because of how much i could offer up to God. and without a fight, i wouldn’t even be able to recognise the “gifts” in my crosses and my vulnerability. so although i despaired, God consoled me with these revelations. it was like a good warm hug He gave! do i still want to give up serving in intercessory teams, as i thought of right after the retreat? not anymore.

i went back to thank God for all He has done for me, as i always do when i talk with Him. this was when i started crying myself silly. thinking back, it’s been a whole 2312 days. and although i am fighting the odds everyday- fighting the instincts to hurt, the instincts to die- and i am always pessimistic, God sustains me. it’s easy to take it for granted, but with each night that falls, and with each dawn that breaks, it is a victory in God’s name. this is unmerited, and i continue to marvel at His grace and mercy, His tireless embrace, His favour that is forever. for 2312 days He has held my hand, even when i want to pull away, and even when i turn my back against Him. He picks me up with His strength when i fall and tells me “it’s ok, my dear child. let’s try again.”. when i simply can’t do anymore, when i’m too tired, too weak, He lifts me up. He never lets me stay fallen. He never lets me lay fallen on the ground, wallowing.

i could never have done it by myself for these 2312 days. sure, they weren’t all good. some were terrible in fact. but i know God has been with me through it all. He was beside me as i winced in pain and blood flowed. He was beside me as i lay sprawled on the toilet floor desanguinating. He was beside me as i took pills too many. He was beside me as my flesh charred. He was with me as i drove a knife into me. He was with as i drove a needles and a syringe into my veins. it did not hurt anyone more than it hurt God. but still He was unrelenting, never letting go of my hand. He was there with my hospital admissions. He was there for all 63 times they passed the currents through my head. He was there for all my surgeries. and most of all He was there for each and every time words (from others) hit me like a dagger, and held me up as i crumbled. for whatever pain i was in, the pain God felt must’ve magnified exponentially. and for that it is truly regrettable.

He is a loving God. and that is undeniable. i may suffer physically with RA and fibromyalgia. i may suffer mentally from intractable depression and bulimia. but these are the crosses i have been given to bear. these too are the very sufferings i endure which i can offer up to God. He gives me these crosses yes, but He doesn’t let me go through them all alone. what a good Lord He is!

i went for evening mass after, the day’s Gospel was about the Annunciation. i have always loved the Annunciation and everything it stands for, especially Mother Mary’s fiat. when Father talked about what Mother Mary said (“I am the handmaid of the Lord”-Lk 1:38), he talked about how this was a call for us too- “I am a servant of the Lord!”. upon hearing that my eyes widened. it hit me hard, after all that i’ve gone through with the despair of being spiritually attacked, knowing i was vulnerable because of my “sufferings”, then still thanking God for my crosses and for sustaining me… it felt like the fiat was never a one-off thing. instead it was a continuous journey to say yes to God, even if i doubted or feared. all we need is to trust in His will- His ways are not our ways! and if God calls me to suffer, to offer up my sufferings in prayer, i will say yes!!!

it’s not easy, but there is joy even in the suffering. because God gives me the grace to endure, to be steadfast, and to hold on to Him. i feel so loved! it really is a kind of love that brings upon an unspeakable joy!

2312 days, and Christ will emerge victorious for many more days!

“for me to live is Christ, and to die is gain.”-Philippians 1:21

“The Redeemer suffered in place of man and for man. Every man has his own share in the Redemption. Each one is also called to share in that suffering through which the Redemption was accomplished. He is called to share in that suffering through which all human suffering has also been redeemed. In bringing about the Redemption through suffering, Christ has also raised human suffering to the level of the Redemption. Thus each man, in his suffering, can also become a sharer in the redemptive suffering of Christ.”

Salvifici Doloris (Apostolic Letter)
St Pope John Paul II
February 1984

stronghold

Image result for the lord is my stronghold

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.