so utterly broken and damaged, i could never be loved.
so as i chased after darkness, i fell. serves me right. it was painful, not for the act itself, but the repercussions. when did it ever not hurt? questions rained down on me throughout the 5 days i was in the system. it sowed doubts in my heart and rendered me discombobulated. and it did not help that i could not find the light anymore. i walked out of there as soon as i could. i wanted to find the light, and i couldn’t find it while locked up in there. i know it is out there somewhere. but out in the splendid darkness, if light is not to be found, that is most dangerous for me.
i guess recovery constantly tests a person’s spirit. it’ll always ask “do you want this badly enough?”, as if to keep you on your toes. and if you let slip that you don’t, that’s when you crack and fall. and as long as you choose the light over darkness, recovery will demand that you damn well put in whatever effort it takes to get through each day. choose it, or lose it. mmm. that’s harsh.
what a tragedy it is, that in recovery i am still struggling to live. a state of being deemed normal to others is a state of being too strange and uncomfortable. i seemed to have forgotten what it means to truly live. these 2.5 months have been good yet too surreal for me. everything seems strangely quiet. it’s so quiet it’s deafening in my head. i can’t sit easy. i struggle with the peace. why are things so calm? but despite all i try to celebrate my cut-free days. but it seems that i’m still very early in recovery attempt. he tells me that i can’t celebrate. not just yet. i’ve had better days- 7 months straight. and my psychiatrist can’t forget how hard i fell right after that. (he also couldn’t rule out the possibility that i may fall into depression yet again.) so in the meantime, i just have to hold on tight. normal is good. strange but good. and i would just have to settle with that, and learn that it will be ok.
everytime i see my rheumatologist or anaesthetist, i tell myself “this is it!”. i tell myself that this will be the consult that will make things all better again. TEN years down the road, and it cannot be more untrue. there is no cure, no fix for all these chronic pain stemming from RA and fibromyalgia. nothing can truly make them go away. to wish that my doctors, however good they are, can make them go away, is unrealistic. and i am only being too hard on myself for asking to be rid of all the pain.
i begged my anaesthetist to take away all my fibro pain (at the least; my rheumy can take care of my joints). going through all my symptoms and then the list of medications he’s been giving me, there really wasn’t much he could give me. he kept all the medications the same, except that he increased the topiramate now to 50mg BD to help with the tension headaches. he was quite appalled by my usage of ergotamine, but i told him this was the state of my headaches. i decided not to get any trigger point injections or intra-articular injections because it’s been proven to be quite futile over the past few years. and i’ve told him i’ll be continuing with physiotherapy, but will be stopping acupuncture. i walked out of the consultation room heavy-hearted. as usual, nothing could be done. i am going to have to live with the debilitating back pain by myself. it doesn’t help that RA is flaring bit by bit each day, and Arcoxia is not helping much.
without considering the 17 years i was undiagnosed, it’s been 10 years. with each day i’m growing more and more weary fighting the pain. and people wonder why i am tired??? i don’t know what i would give to make it all go away. but that would be bliss!
to be entirely honest, the state that i am in right now is rather disconcerting. recovery never felt like this, all these while in the past 6.5 years. it’s been 2 months since i entered this stage of normalcy where nothing quite happens. everything seems monotonous and flat. and i then i wonder if this is really life? it feels so awkward?
despite still being on a school break, i still try to keep up with managing my pain. pain always seems to outrun me, and then also the painkillers that i’m willing to take. painkillers, anti-emetics, physiotherapy, tennis ball, acupuncture, TENS unit. despite all these i still can’t keep up. i also have psychiatric appointments to keep every week, and they make me so tired *phew*.
my friends tell me that they noticed that seem more joyful, more at peace (really??). 2 months of normalcy hasn’t been easy, and i wonder what it would be like to lose it all again. too easy. i know i am very vulnerable right now, especially with visual triggers. and i know i will fall again if i lose to my impulsivity. but no one ever said it was easy?
let’s just pray that i will keep wanting this. because i sure am hell ain’t used to this.
i don’t know what clicked. how recovery could’ve eluded me for 6.5 years, and it happens just like that??? i know it must’ve been divine intervention.
but nevertheless, no matter how rosy it seems, the struggle seems real. i still have bouts of sadness, but i do feel inexplicable joy at times. i don’t hurt myself anymore, but i had an incident, and i get triggered constantly and the threat of falling any second is very real. most of my other symptoms have improved from the tireless pursuit of psychiatric medications.
God doesn’t necessarily gives us what we want. He gives us what we need.
in the same vein, thinking for years that i needed answers to heal? i couldn’t be more wrong. i always wondered why i couldn’t find the healing that eluded me. i believed that if i had answers, i could heal. but to be completely honest, i already have the answers. but answers don’t magically make everything go away.
going to the retreat in early January, not knowing much of what i wanted out of the retreat except that i wanted healing (by default that is always what i want out of a retreat), i left feeling rather unchanged. i didn’t “feel” like i was healed. but then again, what does it feel like to be healed? i felt underwhelmed. but as days go by, it became more evident that God’s grace was working in me. i was more joyful, less melancholic. i was able to cooperate with His grace. i am even more than 2 months cut-free! ah, such grace! also, God’s grace working inside of me though intangible, was even witnessed by my community!
this grace He gives was what i needed. it was a long time coming, but we live in God’s time!
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:
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!
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).