Tag Archive | recovery

this is the way, walk in it

in 72 hours, i presented myself twice (and no less) to the Emergency Department, afraid of bscklash, wallowing in shame and guilt. how did things become this way?

in June, and even now in July, i struggle. i can tell you that having faith itself and claiming to have head knowledge are a world of a difference. i know that in my utter brokenness, my faith is lacking. i don’t claim as much as i can, my identity as the beloved child and daughter of God. i always remember from retreats and from conversations with friends, about how Peter walked on water. i have to learn from him, in that he trained his eyes on Jesus- he had faith and he believed! because when his eyes wandered he sank!

i have to constantly keep my gaze on God, my saviour! i may not always know why i am triggered or upset, but i guess i just have to put my faith and trust in Him? and yes, i have to learn to open the door of my heart to Him!!!

“He destined us in love to be his sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace which he freely bestowed on us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace which he lavished upon us.”

-Ephesians 1:5-8

p.s. Haemoglobin has dropped to 8.5g/dL, but they said it wasn’t low enough for a blood transfusion. Hand surgeons said Palmaris Longus and Flexor Carpi Radialis Sheath both sustained cuts (ie damage) but they weren’t gonna repair it. On a backslab now.

after the fall

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.

 

 

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.

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?

let go, let God

sometimes i don’t know if it’s letting go, or giving up. it’s a fine line.

for many years, i’ve fought against everything that ailed me. it was mostly pain, then it was the sinking sadness, the murderous suicidality, the ravaging hunger, everything. i didn’t want them. i want so much to make them go away. i wanted real solutions. but everything i have fought for gave me only temporary reprieve. they were still there, and it only made me angry. mostly angry at myself, but also angry at the doctors. why couldn’t i get better? why couldn’t they fix me? i never had the answers, and they didn’t give it to me as well. for years i left consultation rooms both angry and disappointed. the anger raged within me and it fed into the monsters in my head. the hopelessness and helplessness only served to dump me down. it didn’t make things any better.

i must’ve have gone through this phase several times in these last 10 years. my mind shuts down. i stop fighting. i give in. i let it all eat me up. it means that i am settling. i settle with the pain and i will stop asking my doctors to fix me (both my anaesthetist and rheumy). i settle with what i have right now with pain and disease management. i settle with knowing that i will not have answers nor solutions. does it help with the pain? no it doesn’t. but the anger within me quelled. it was like *phew*. the load on my shoulders got significantly lighter. i can breathe better. letting go after trying so hard to gain control over every aspect of my life, was a world of a difference.


i talked to my anaesthetist. i told him that right now i could settle with plain Anarex (paracetamol+orphenadrine), tramadol, and Arcoxia (etoricoxib). that i didn’t need any Oxycontin because i am ok where i am right now. he was cool with it, after some hoohah over opiates between the medical and psychiatric hospitals. he understands that if i do need it, i will reach out to him. but right now, i don’t wanna be popping unnecessary pain meds that will not help with chronic rotator cuff tendinitis.

i talked to my rheumy today. she was very concerned by the possibility of me having MS, and went on a tendon-tapping frenzy today. but besides that, we have established that i am now RA quiescent- i’m in remission. nevermind the rotator cuff tendinitis that’s long-standing now. i told her also that i will settle. it’s a compromise. i don’t want to medicate myself further just to eradicate the tendinitis, because it’ll probably be futile.

(i’ve never really connected with the clinic staff even though i’ve been seeing my rheumy for 8-9 years. but today, an assistant nurse tells me that she knows i’ve been around for a long time. i didn’t think anyone would notice, but well, they did. made me smile!)

i am, to be honest, extremely heartened that these 2 doctors are playing very much of a supportive role. they ask my opinions on what they can do for me, or on what they can give me to help me. it took awhile for us to reach this point, but i don’t blame them. it’s difficult to see for themselves a patient who butchers herself in unimaginable ways, who is plagued with medical and psychiatric admissions, and has so many things on her plate that everything health-wise is intertwined. both of them are parents themselves, and i witnessed their difficulty accepting a patient like me. parents’ instincts i guess. their letting go, and now me letting go, has made it supremely easy to cope.


i’m not quite sure though, if i could settle with the psychic pain. the anguish and the torment of living with depression, self-harm, bulimia and borderline traits, is like free-falling through an infinite drop. you think the horror of falling is ending, like somehow there’s ground somewhere. but it doesn’t end. it will not end until i’ve suffered enough. i’ve let go in a way that i’ve tried to not grasp everything in my head- that’s cruel to myself. i’ve let go in a way that i don’t fight aggressively with my monsters. i’ve settled on knowing that my psychiatrist will not have answers for me- none of them ever had, so what makes my current one different? they know that i am notoriously difficult to treat, my severe depression refractory. i accept that they can’t quite save me. i accept that they are treating me symptomatically and keeping me functional. damage control. we were, and are never in that stage where we look forward and say that “hey let’s work towards recovery”, because i’m not there yet. i’ve never been. everytime i get closer to that, i fall. and so we’ve learnt.


it takes courage and faith, to let go of what i cannot control in my “sufferings”. i’d like to think that i am not giving up. rather, i place myself in the hands of God. i accept how things are. and i work with what i have. i will not chase for answers or solutions if there’s likely none. i will not fight, not because i am weak. but because fighting is counterintuitive. i will cope with these “sufferings” with faith, hope and time. and perhaps one day i’ll be able to say that i’ve triumphed over these “sufferings”. i have doubts with what i am doing right now (everything i’ve mentioned in this post). but this is the only way to go, where i am. and i’ll place it all at the foot of the cross, and give it up to Him.

 

i will not settle

in the past 5 years, many people have told me what i cannot do, many of them have this tendency to decide what should be done to me, and many liked to point out my shortcomings, even though it is glaring that i am aware of it myself. i am turning 26 this year, and it still goes on. i have given in, caved in, due to the pressure given, and the insistence that they know better.

i have let people disparage me, decide that i should stop work, and tell me that i am unfit to work although i have been cleared by my doctor. i have let people bring me down, and oh i let them do so, and others have given me grief for doing so as well. i have been told i cannot do this or that, because my depression renders me “weak” and a “liability”. i have let people lock me up, making damn well use of the Mental Health Act. i have allowed people to tell me in my face “why are you still like that?”, and tell me the precedent of my depression doesn’t seem to warrant such a long and severe bout of depression.

i am asked sometimes why i have such a low self-esteem. i tell them that it has been low all the while, but in the past 5 years, i have been trampled on time and again by people. and it has been a very vulnerable period for me. so tell me again. why am i down, and why is my self-esteem so low? why is my recovery process so slow? why am i the way i am

most times i let them get to me, because i believe them while being extremely vulnerable. but was there ever any basis for such words? oh no, i don’t think so. the only basis is that of stereotype. depression just seems like such a vulgar word that it doesn’t call for any empathy. and it seems rather apparent that tearing a person with depression apart is pretty apt.

after my discharge on Friday and finding myself fighting to not go inpatient again, i realised that i have found some strength in me to defy what people like to condemn me with. perhaps a part of me is tired of just going with the flow. or maybe i’m just filled to the brim with all these disparaging.

i simply will not settle, from today onwards. i will fight, and i will damn well talk them down, if they were to even begin to mutter a word about me. and for those who have already done damage (95% of them don’t even know that they’ve trampled on me), God bless you, and i don’t have the space in my life to accommodate you.