Tag Archive | lethargy

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!

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what you don’t know

  1. RA and fibromyalgia changes a person. living with chronic pain does that to you. it makes me embittered and disillusioned with life and the healthcare system.
  2. Chronic pain means that i carry a pouch of medications in my bag always. Painkillers that go up the spectrum in its strength. Topical painkillers. Anti-emetics in case the painkillers make me nauseated. Anxiety also means i carry with me benzodiazepines (usually clonazepam). Without this pouch when i’m out, i’m practically nothing.
  3. RA is an autoimmune disorder, and it can only be managed (put nicely, put in remission), never cured. And there was nothing i did to induce such a chronic and debilitating disease. Mine started when i was merely 1 years old.
  4. Fibromyalgia is a legitimate illness. It is not a diagnosis placed on a person if a doctor can’t figure out what a patient is going through (i.e. garbage diagnosis). No my pain is not psychosomatic. No my pain is not because i’m doing everything wrongly (posture, ergonomics at school/work, the way i sleep etc), No i’m not lazy, i’m just perpetually exhausted/fatigued despite the amount of sleep/naps i get.
  5. I don’t find excuses because of my illnesses. I try my best even through the pain and the exhaustion. Heck it even takes courage to admit that i am giving something up, or if i have to say no, when i feel my disease involvement is really being tested and exacerbated.
  6. i have chronic depression, and it happened (and still persists) not because i was weak. it started in 2010 because i gave too much of a damn about something- something that i was passionate about, and was good at, that pride took over. at that point my eating disorder was in full swing for a year already, and it didn’t help with the stress and pressure i faced.
  7. i fight. and i don’t stop fighting. i fought to finishing nursing school, and fought to finish it well. i fought at and for work as a nurse. i gave up my career as a nurse because undue pressure and sanctions were placed on me just to validate my license. it triggered me everytime i had to go down to board’s office to submit the letter from my psychiatrist.
  8. the people who are in the caring profession are the very people who perpetuate the stigma of mental illnesses. this was something i could never understand.
  9. i’ve lived in hospitals- medical and psychiatric- for a total of nearly 3 years. it takes courage to go in, to admit that i need help. it is not attention-seeking behaviour. and to be honest, all these time in hospitals are the ones that kept me alive.
  10. and yes, as much as it seems the opposite, i am fighting to live. i subjected myself to 63 sessions of electroconvulsive therapy (ECT- in layman terms, electric currents that runs through the head), because i struggle with chronic suicidality. if i seem forgetful, this is why. amnesia is the primary side effect of ECTs.
  11. i’ve been labelled as the “worst case” my psychiatrist has seen, “the most difficult patient” my psychiatrist has had. 70 over sessions with my psychologist yielded almost no effect on my mental health. so pardon me if i think i am a hopeless case.
  12. people have asked it, and implore you not to ask it nor even think about it, why i am “still like that”. do you actually think any sane person (yes i am very much sane) would want any of this bullshit? if i can have it my way, i want nothing of this.
  13. i am always fighting to manage my conditions, and that includes working towards recovery. sometimes i am able to muster the strength to stay relatively well (usually from extrinsic motivations). but it doesn’t mean that i’ve done it before, that it cann be replicated. circumstances are always different. and not reaching recovery doesn’t mean i am weak. it means i’m still fighting. whether it is me managing my symptoms because that seems to be more important at that time, or whether it is me fighting my demons because it feels like i’m well enough to work towards recovery.
  14. i am always seeing doctors, and again this is not attention-seeking. i see a rheumatologist, a pain specialist, a psychiatrist and a psychotherapist (who’s also a psychiatrist), with the occasional visit to a gastroenterologist, a nephrologist, a neurologist etc. i am for the record, not the healthiest person around, and no i did nothing to deserve anything that warrants these visits.

  15. when i cancel on you, it does not mean i’m not keeping my end of my promise. it usually means i’m exhausted through and through, either from the disease process of RA, fibro, or even depression. or it means my mood has plunged, and/or i am crippled with anxiety that i can’t leave the house.
  16. when you see me smiling and laughing, talking (sometimes loudly), walking with normal strides with my head held up, 99% of the time it is a facade you see. this facade is quite true to my old self. and it takes immense energy to keep the facade up.
  17. when you see me turn a little quieter, becoming more reserved and isolated, head down, and walking a little slower, it means the energy that’s keeping up my facade has run out. it means you are seeing a more genuine side of me, and honestly, i’m not fun to be with once this occurs. it can dampen the spirits of everyone, and i don’t mean to do that.
  18. i am easily triggered. when i see images or hear about things like suicide, means to kill oneself (like ropes, pills etc), and all, i immediately withdraw. it can mean that self-harm will come later, but that’s just the way i am. i am extremely sensitive.
  19. when i bare my arms to you, it means i trust you enough not to judge me. i am not proud of my scars. but i don’t want to tie it so much to shame as well.
  20. it’ll be difficult to accept me because of the way i butcher myself. but i always hope people can understand that self-harm is my way of coping, of self-regulating. it’s just like how people turn to alcohol, drugs and ciggs. and if you have questions, i really don’t mind being asked, as long as it is done tastefully.

it’s difficult for people, and even my doctors, to see how pain is inevitably intertwined with depression. everyday is a battle for me. i start off my day downing anti-depressants and a cocktail of pain medications. it’s a judgement call to make, for how much pain medications i need to start my day. a painful day makes for a very moody and/or angsty day. on the other hand, there is no happy pill. when i’m anxious, i pop a clonazepam, but it doesn’t make it go away totally. sadness, despair, distress and worry usually accompany anxiety. and if i can, i lie down, hide under a blanket, an try to sleep it off. if i’m out, i try with all my might to get home to do precisely that- hide and sleep. the worst is when my mind decides that my life is not worth living. there is no anti-suicidality pill. there is only self-injury and ECTs. i don’t hurt myself for the sake of it. ironically i hurt myself to stave off the suicidality (at least when i’m not inpatient), and it does help. it’s difficult to believe it, but it really does help. it helps me to at least live till tomorrow. and sometimes that’s all that is important right?

everyday is still a day of self-discovery, of learning who i am and what i am. everyday is a chance to be stronger, more resilient, more accepting, and a chance to desire living instead of dying.

my friend from my community described me as a fighter, as do many others, in different ways and words. i constantly deny them, because depression tells me everything otherwise. but for the past few days, i’ve thought about it. if i hadn’t fought, even as a child with undiagnosed juvenile RA, would i be here? if i hadn’t fought through the pain even as it progressed into adulthood, and then also fighting with fibro, would i be here? if i hadn’t fought with depression and bulimia, would i even still exist? it answers it all.

lastly, without my faith in God, i am nothing. He was the one who carried me through all these years, giving me the strength and courage when there was none to go on. He carried my crosses (which are my burdens and struggles) with me, and never left me even when i turned the other cheek. what can i say? God is good. God is Love!!!

The Lord will fight for you, and you have only to be still. -Exodus 14:14

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

Carry on

it feels so dire, being so symptomatic, in RA and in depression. it’s like a good hard whack in the face (and in fact the whole of me) everyday, relentlessly.

it takes so much of me to, as what they tell me, go on in spite of being battered up badly with each day. indeed. i feel like like i am sapped of, or sucked of, all the energy that i can possibly harness. in fact i am running on negative all the time.

and honest to goodness, i am at a melt down stage.

but i can’t. i can’t afford it. and so i hold myself together, as tight as i can, so that i may carry on.

Trudging forward

With new wounds, fresh scars, and a lot of pain, I’ve picked myself up and i’m ready to trudge forward again. It’s not gonna be easy i know. But i only ask that nothing, and no one, will come forward to shove and trip me over once more. It has been once too many, and i’ve grown too weary. I cannot trip again.

Been feeling under the weather since the bus ride yesterday. The malaise and lethargy is just horrible. Plus yawning to no end, making my TMJs ache and click. It reminds me of when the transaminitis was at its worst- ALT and AST in the thousands. Man… I’m really hoping it’s not the liver again. It could be my dietary intake(or the lack of it). It could be my RA. It could be my excessive consumption of diet coke- i’ve not drunk water in days(i can’t even keep count). Or maybe it’s just one of those bad days.

It’s such a huge pain in the ass planning medical appointments. *aargh* I think the medicine clinic staff are annoyed with my changes almost everytime. And now i’m gonna annoy the JMC staff too with my changes. But what to do? It either clashes with school, or with clinicals. And now that school is out of the way, the clinicals make it difficult with 5 weeks of 8-4 shifts. Even worse when i start on PRCP. *meh* Such a bother. I wish there’s some leeway for such medical appointments. It’s making keeping appointments so difficult. *stab*