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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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the struggle

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!

recovery

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.


after edit:

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.

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!