Archives

*ripppppp*

  • it’s not ok to say you’re not ok. people don’t want to know why you’re not ok.
  • when your friends say they understand you, they actually don’t. really.
  • and so, never seek to be understood.
  • don’t open your heart to anyone. it’s irretrievable and regret is inevitable.
  • there is never solely a single panacea.
  • keep your words to yourself if your words don’t lift the other person up.
  • love and care too much at your own peril. you’ll be fucking damned.
  • don’t look for love. love will find you.

since my discharge i’ve been very troubled, very pensive. there’s too much going on, and i don’t know why. in my head is solely self-reproach. there’s no room to be kind or gentle, however much i try. i close my eyes and i hear disparaging words, berating myself for all that i’ve done wrong. i sit in the present, helpless in changing the past, and looking to the future feeling extremely hopeless. i don’t know what to do. every single moment i’m awake i’m ruminating, and the only reprieve is when i’m asleep, or when i…

it weighs heavily on my heart that my final school year starts in 2 weeks. i hate to return to classes and a 10,000 word dissertation in such a state. there is no room to fall, no room to say “i need some time/space”.

and the worst part is that it is likely nothing can be done to alleviate all of these.

can i just walk away from life and disappear into nothingness?

 

 

health wise, head wise

admittedly, the physical pain that often plagues me has lessened considerably. i rely much less on pain medications. and to be honest, although it’s a good thing and it is heartening, i am also afraid. my body, my health, and of course life, is ever so dynamic. what i gain today, i can lose tomorrow, and vice versa.

and yes, so i fear.

it’s still a long time before i see a neurologist. i see one late June. although i’ve not had anymore “attacks”, i’ve realised that my clumsiness is not getting better. i asked my mum if i’ve ever been clumsy, and she said no. it’s only been in recent years that i keep finding myself sprawled on the ground, the road, and recently on the escalator. i’ve even fallen and rolled off steps. clumsiness is not a symptom of MS, but it is telling, from what i have learnt as a nurse. and so when i found myself falling on the escalator last week, my 2nd fall in just 1 week, i was just… lost. but i’ll let things be.

i always err on the cautious side with my health because years and years of being sick and being medicated has changed my body in so many unimaginable ways. parents, people and healthcare professionals think i am attention-seeking. but what do you do when you’ve know for years- 16-17 years- that something is wrong with your body, yet no one tries to even get you medical help? when i was 17 i brought myself to doctor and found out i had been living and suffering silently with JRA (RA after that) since i was just 1. and even with a diagnosis from rheumatologists, my parents are disapproving of what was going on with my body. so i learnt it the hard way, to ask for help with a body that does not agree.

after hiking in Chiang Mai, i discovered (again the hard way) that my heart did not agree with too much effort. when i came back, it slowly became evident again that i was heaving walking only halfway to the bus stop. that’s not strenuous, right? i have been getting breathless at every little thing i do. i just registered a heart rate of 140+ at rest today. i know my heart is not doing great, and i’m going back to see a cardiologist again. nothing might have worsened. something might have gone wrong. i don’t know. there’s always fear that my left ventricle has dilated further. hmph.

i guess i am just a really anxious person who needs reassurance that my body is not failing on me again. i am tormented enough with psychic pain, and i don’t know how else to quell the perpetual anxiety in me that something is wrong.

anyway, head wise, i’ve not been doing great. it’s been extremely difficult. my eating disorder is back. full blown. and it really messes things up, after it being so fully latent for a year or so. it’s an insurmountable task, coping with the depression and eating disorder, because they both feed into each other.

so yup. oh and i’m back at school. i’m doing just a counselling module this term, and i love what we talk about in lectures.

 

 

unnecessary update

things that have happened in the past week:

  • got a subacromial triamcinolone injection in my left shoulder for the rotator cuff tendinitis that has persisted for 2+ months, with false hopes. it’s been a week and it’s still giving me much grief.
  • DMARDs are held off by rheumy again. beginning to agree with rheumy that i might be growing out of my RA. yay?
  • the ankle with the torn ligament is getting much better with plenty of rest!
  • infection on my arm with a lot of frank pus. gross.
  • decided to return to class right after i come back from my silent retreat in Chiang Mai. so that will be early May. parents are still worried i’m pushing myself too hard???
  • almost 2 weeks out! oh my life is boring.

*exhales*

i can finally breathe *exhales*

missing 3 weeks out of the 5 weeks of classes, rushing 2 papers in 1 week, and cramming 1000+ powerpoint slides for 2 exams- this are things that i endeavour not to attempt again. managing all these, together with work, and the expectations from my lecturers and parents, was a great test of my faith and strength.

amnesia was something i didn’t talk about during this period. it was and still is something i struggle with. going through currents threatens the memories that i’ve been holding, and the new ones i’m making. although i’ve made it through nursing school and work with it, going for exams 3 weeks after i’ve done 3 sessions, was me playing with fire. but what was i to do? if i can’t remember it, i can’t. does it not hurt to know you’ve studied something but you don’t know what it is when the time comes?

the year is coming to an end. i have a retreat to serve at, and 4 doctors appointments to go for, between now and the new year.school is on a break till then *phew*. but work is still ongoing.

 

everything will be ok?

everything has wound down for now and i can finally exhale- it felt like my life was on hold for the last 2 weeks. my vulnerability had left me holding my breath. i guess a lot of my past has shaped a lot of my fears and inhibitions. there has been several firsts in my feeble journey to recovery for the last 2 years, and if i wasn’t scared, i was disappointed.

my resolution to avoid incarceration lasted for a little over 2 years. i was in and out of hospital too much between 2010 and 2013 and lost almost 2 whole years spent in psychiatric wards. thus the decision to stay “out in the wild” in October 2013 after one last discharge. to be honest when i was “committed” (i wasn’t, but if i had not consented, they would have), i was very disappointed with myself for letting myself fall this much. but when the situation arrived thus far, how was i to fight and say no? i recognised that i was acutely sick in the eyes of psychiatrist and i needed help. i was such a mess that if it didn’t happen then, it would have happened sooner or later. so i let go and i let God, and surrendered myself wholly to His will.

it was definitely over 2 years ago when i halted my ECT sessions at #41 when i felt memory slipping through my hands like sand, too much for me to bear. the amnesia from #1 never went away, and only built upon each other with each consequent session. to say the least it affected my studies back then, my work, and then also my personal life. there was no lack of resentment for the retrograde and anterograde amnesia. but on the other hand i was also grateful that it saved me from my sinking sadness (and severe depression) many a time. when i was offered ECT as a first-line this time, i gave it little thought and said yes in a heart beat. there was everything to risk, and nothing but memories to lose. so this time i stopped at #44, and sometimes i ask myself if it was worth it. but right here and now, i think it was a good move made. i don’t think i can ever say no to ECT indefinitely.

it was my first time “coming out of the closet” telling my Catholic community whom i dearly call Sinners, that i was in. never in my life had i ever come clean with a group of friends with my hospital admissions. what it has always been was that my best friend would inadvertently find out about me being inpatient before i even told her. i knew none of my friends took interest in the fact that i was always in and out. besides it was never something that i could say without shame. closer friends told me before “you’re admitted AGAIN???”. and it hurt. however life has changed since joining Sinners in July and they have been my pillar of strength and support. admitting to them that i was going to be inpatient because i have been feeling a certain way… was me letting my guard down with my brothers and sisters in Christ, letting them see the vulnerable side me, and letting them stretch out a helping hand to me. the outpouring of love from Sinners, and also staff from Office For Young People, gave me this inexplicable feeling of warmth and love that i’ve never felt before. and God used them as His glorious instruments to tell me how perfectly loved i am. for all of these i have no words but my utmost gratitude.

it is also my first time being down with pneumonia. i hadn’t had a true fever for about 10 years (yes despite all my DMARDs), so the fever (up to about 39.2) caught me by surprise first. then the faint patch seen on my chext x-ray on my right upper lobe was the shock. my white cell count (16.6) had skyrocketed (neutrophils and monocytes were also twice the upper limit) i could never have fathomed that me and a case of pneumonia could go together. at least not at this age. all the doctors who were involved in my case before my diagnosis thought it was me restarting MTX 3 weeks before my initial admission. after my diagnosis, they all seemed to think it was that, and that it was hospital acquired (i was already in the 2nd hospital before i made the transfer to the 3rd hospital). they had asked my rheumy as well and her orders were to hold off MTX until i see her in December. that was something i was bummed with. i received several doses of intravenous tazobactam/piperacillin. my vein got “burned” and now it hurts even when i’m home. they discharged me only when they were positive i wasn’t getting anymore fevers..

coming out of all of these different than when i first got admitted is really God-given grace. i prayed and i read and i wrote and i drew and i sang and i meditated, in my bid to maintain any semblance of sanity especially in my first week of hospitalisation. as usual, with matters of the mind, things get really heavy and suffocating, and anxiety-provoking at times. i don’t know how i pulled through, but i know it could only be that my good Lord carried me through. no?


 

right now, the most pressing issue is school. i had decided to defer my current 2 modules, seeing that i have/will miss 3 out of 5 weeks of lectures. but i was just informed that these 2 modules won’t be offered till next September, and that means i have to defer my Honours year as well. i don’t think this was part of what i signed up for, so i think i’ll have to get an extension for my 2 papers which are due end of this week (can you imagine i haven’t started on it???), and read the lecture notes for my exams the week after.

i’m so screwed???

 

from Hurtful to Helpful

image

today we celebrate World Mental Health Day, for me there was more to be glad about.

i was approached by my clinical psychologist about 3 years ago to write something for the 2nd book of a series called “Mind This Voice”. it was something that was birthed from the psychology department of our local psychiatric hospital, and from my psychologist herself. the first book was themed “The Write to Recovery”, and this 2nd book was themed “From Hurtful to Helpful”. it was going to be about personal relationships in the struggles of coping with mental health concerns, and how it went from hurtful to helpful. for me, back then it was pretty much set that i was going to be writing about therapeutic writing.

honestly i don’t remember much of the process of writing my piece because of the amnesia, except that i had a lot of difficulties producing my first draft and procrastination was at its best. but i know putting it in words how therapeutic writing can be, lends me the voice of just one aspect of living with mental health concerns. it was also empowering to share about how writing helps us to find our own voice in the midst of our struggles, when we could say nothing when it hurts the most. that the written words are our tears when hope is gone, but also our joy when hope glimmered. more importantly, writing is like a friend, a confidante. one which we could trust our struggles with. for that to be put in words and printed in a book which other people living with mental health concerns and their caregivers could read and try writing out themselves…

i guess i am humbled and also very grateful.

sure it’s nothing big, some might think. it’s just a short piece in a book of many stories. and i must say that if i could change how i wrote it, i would. (what was i thinking 2 years ago???) but this is a little like a dream come true. it’s not that i dream to one day be an author. but falling into depression 5 years ago, i’ve written plenty. and time and again i get told by people on my team that i should perhaps “write a book” next time. when not just one person tells you that but a few, and repeatedly… there is this audacity to even hope that one day i could write something.

so getting printed makes my heart stir, and i’m gleeful like a kid. but also cautious to not let pride take over. i know all these happens in God’s grace and mercy. and He has been extremely loving. giving me crosses to bear, yet also being so gracious that in these sufferings i keep receiving. the past week letting it all sink in, i ask myself again and again, what good have i ever done to merit such graces (k that is my depression talking)?

with these i am reminding myself that out of all these suffering comes greater glory, that in pain gifts can be found, and nothing is ever for naught.

i leave with you a short excerpt from my piece titled “Let Writing Be Your Friend”.

image

p.s attending the launch today and seeing my psychologist, i shared with her my latest “writings”, which is my research methods paper. i had done a study about reducing stigma people with mental illness, and i found some merit in just showing a video to reduce stigma. (enough to produce significant result, p<0.05) she had suggested that i could try getting it published. although initially i didn’t really think that was possible, she convinced me why there is even any possibility that it could be accepted by any one psychology journal. and then from there i was just WOOHOOOOOOOOOO. i used to dream as a nurse, to be academically published. whether or not this even concrete, this is the first step in the right direction!!! ok this is probably trivial, but let me just ride on the waves of happiness that came from today alone haha.

managing fibro

I’ve been waiting for today for so long- ever since i had my major FM flare, my body has been begging to be anaesthetised to take away the pain. the pain that eats at me and demands rest, the tennis ball, painkillers, and a bag of difficult emotions to go along. and the flare that started on Sunday night made it sure enough that i needed intervention.

seeing my anaesthetist, we talked a lot about stressors. there were questions about school. family, RA, stress, depression, everything. he, as i do, is looking at possible triggers. of course we could be sure that exercise/physical activity triggers the flares, but the only other factor is stress. stress is an all-encompassing factor. it’s rather vague, but oh well.

i had a grand total of 8 bupivacaine injections in my upper back. i forgot to ask him if he used triamcinolone though. the plan for the next 5 weeks- letting my upper back rest and see if the injections help, increasing my pregabalin dose to 450mg/day, trying to go off oxycodone to see if it has been helping at all, and finally starting physiotherapy. i don’t want to have expectations that the next 5 weeks will be good. i am only hoping that the pain decreases at the very least.

i loathe exercise, and after flaring post-SUPing, i’m traumatised. but the fact is, exercise will help with my FM, possibly RA and depression too. i’ve been very reluctant with physiotherapy, even back when i was first diagnosed with RA in 2007. i wouldn’t persist after the first 2 sessions or so, because i wasn’t able to commit to the exercise, and because i was basically dooming myself to failure futility. maybe it’s really time to get my ass to exercise.

i really cannot rely on medicine.

my back is aching right now post-injection. i have a difficult week ahead because my research paper is due.

c’mon Steph. bloom. don’t let the pain get you down.