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.

 

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.

 

 

scorched

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i just returned from Chiang Mai, Thailand. it was a 5 day trip with my parents. considerably shorter than the 10 days we had booked for, when i first arranged for my spiritual retreat. in the days leading up to the trip, i was still bitter that i was rejected for an agreed upon retreat, because i was forthcoming with my depression. the people around me, friends who are Catholic, tried to comfort me by telling me that perhaps this was not the time for me to spend so much time in silence alone with God. i was also frustrated at the fickleness of my parents and their insistence that we did not set an itinerary. the thought of spending 24/7 with my parents, sharing even a hotel room, scared the shit out of me. i didn’t think i could deal with it. so before we flew, yes i was literally going crazy.

we enjoyed Chiang Mai, except for the scorching heat and rowdy tourists. dad and i would bicker, and he threw his usual “tantrums” several times. but whatever it was, i knew i could i look forward to a zip line adventure that i had booked much earlier. one which i could go for without my parents. i had an amazing time zipping through over 10 lines. the longest we had was a 700m line and that was fucking amazing. i felt so free then, although admittedly the physical aspect of hiking really challenged my poor heart. i also enjoyed good ‘me’ time shopping alone. H&M gave me a sweater that i’d wear with everything. and that never comes that easily.

i had many mixed feelings coming home. i didn’t want to return to the monotony that is my life. i didn’t want to return to somewhere i feel most vulnerable. i didn’t want the control of my parents (but believe me it is worse in Chiang Mai). i didn’t want to have to be in my room where my mind is left to its monsters.

but alas. home it is. therapy the day after i arrived home. and school the next (which is today). many things distress me now.

i’ll just leave things here for now.

 

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.

a rare chance

i was in the hospital for the last 6 days because of a raging infection on my arm (CRP was 101). to say the least, i was extremely reluctant to bring myself to the hospital because i knew what would come out of it. because of the nature of my wounds, it was expected that the psychiatrist would be involved, and that was the cause of my worry.

i didn’t want to go back to the psychiatric hospital again. and my worries were not for nothing. it was technically decreed for me to be sent to the psychiatric hospital after i was cleared medically. i wasn’t surprised, but i wasn’t pleased either. when they made it clear to me that i could not head home, my mood crashed while i panicked in my mind about what i should do to avoid being admitted into the psychiatric hospital. i slept for hours on end today in a bid to run away from the anxiety of impending doom.

i left the hospital in an ambulance, like it’s always been the last few times. i told my parents that the only way to change this “fate” that i have been condemned to, was to persuade the doctor in the Emergency Room, that i was in no need of an admission. so that was what i did. i almost cried in the consultation room because i have almost never walked out of the psychiatric hospital’s Emergency Room “scot-free”.

no one will understand what a psychiatric admission means and feels. being locked up with triple locks (you have to get through 3 locked doors), the bare minimum to live on, and nothing much to make you feel any better… it is fucking demoralising. it’s the place where you’ve fallen, and try as you might you can’t pick yourself up. it’s the place you know that you’re so fucked up, but they remind you of it everyday anyway. it’s a place that’s a vacuum, that is devoid of hope. one doesn’t leave the ward “all better”. one leaves the ward to be left alone to pick the self up and to put everything back to place again. one leaves still demoralised, and sometimes it never goes away.

i didn’t want to go in again, because the last 1 month out has been so incredibly difficult. i haven’t even managed to get my shit together. i wasn’t ready to be thrown in again, and have all the progress i’ve made undone. i know that whatever that i am right now, going in would change things and throw me off balance. i was scared, to be honest, of going in. and this comes from someone who has spent more than 2 years inpatient (added up).

being back home again is putting things in perspective again. i remember all the times i came home from being inpatient, feeling like all is foreign, yet also having the real sense of longing. it’s the place where i belong. not inpatient, no matter how much i’m used to being inpatient. so yes i feel extremely blessed that i was given a chance despite the shit that i have done to myself.

MS?

i woke up on Tuesday morning with my left lower leg asleep. it was numb as hell. and  when i tried to restore any sensation in it (because i naturally thought i must have slept in  a funny position), it couldn’t happen. it was a nightmare.

my mum brought me to the EMD. took bloods and x-rays. they wanted to admit me under orthopaedics because it appeared to be caused by some issues with my L5 and S1 spine (it appears to correlate with L5 and S1 dermatomes). i waited for quite a few hours for the bed, and then suddenly the orthopaedic team came to do their rounds. they did the usual tests, and told me they have no idea what it is, and that even if i was admitted they were not going to do anything. only give me some stupid supplement for my nerves. i was extremely frustrated, and told them i’d rather go home. in my mind i thought this doctor was talking bull, and i wasn’t going to take any of this shit.

i went for a second opinion today (Wednesday) with a spine specialist. the numbness was a bit better and i could feel pins and needles. he looked through my x-ray and MRI films from before. of all things, he caught erosions in my left hip, probably from my RA. the joint space is narrowed, and nobody knew or said anything. the supposed “syrinx” that was reported in my MRI at the C6 level appeared to him as a “plaque”. all the tests he did made it obvious to him it was very unlike to be a spinal issue. he told me it seemed more like a neurological problem.

he mentioned a slight possibility of Multiple Sclerosis, especially when there is a plaque at the level of the cervical spine, and with such symptoms without any aggravating factors.

it’s a mixed bag of feelings. i’m giving this leg until Friday. and if it’s still not MUCH better, then i’m going to the EMD again. but looking at the way it is, it probably will go away before that. i’m quite sure of that. such shit usually don’t last very long.

note to self

 

you think life is about living, but it’s really about not dying. you think recovery is about not being sad, about not being anxious, about hitting those milestones of not hurting yourself, of not wanting to annihilate yourself, of not being admitted. but it’s not. you think life will be better after it’s over, but these monsters will continue to haunt you. you think you will start to heal when people start to understand you, but no they won’t and can’t even begin to. it’s been over 5 years, and you still covert for that “recovery” doctors and alike are looking for. but all of these, though indicators that things are better, isn’t recovery. recovery is a much bigger picture. one in which you find yourself again. one in which you can reconcile with fully and accept the past for what it was.

you try so hard to find the old Steph back again. the one before depression held you hostage. but you can’t, and you won’t. that Steph is dead, and has been for a long time. you’ve been chasing after the wrong rainbow. you thread between the threshold of life and death, and depression mocks at you for being so utterly weak. depression mocks at you for falling prey, for staying “comfortable” where you are at.

you are tired and scared, as you’ve been for the past few years. you’ve been thinking a lot about your future. your future seems to include depression, self-harm and admissions. your future seems to include all your borderline and narcissistic traits. you worry that you can’t hold on to a job for long, as have you for the last few years. you don’t know how this will work out. this is a grim prospect that you can’t seem to reconcile with. you don’t think you’d ever be ok with something like this. you don’t want to do this. you don’t want this life. you want to fight it all away, all these monsters. but you pale in comparison to them, and you will always fall victim to it. you until now, don’t know what sense to make of it.

sometimes you think you know what you’re up against, but you don’t have the foggiest idea at times. you let people hurt you time and again, and you hurt and you bleed. yet you won’t tell them to stop. you let yourself hurt you, and sometimes you try to be kind to yourself. but you fail anyway. many people make decisions for you, thinking they know better. after all you’re so weak, so fallen. but do they? do they really know? sometimes i protest, but they tell me they know better. but they don’t. they really don’t.

what you can grasp in your hand is nothing but hope. a quiet hope that is not there at all sometimes. there is nothing else you can hold on to. not people, not medications, not therapy, not words. hope. it waxes and wanes, this hope. and this hope is not there when you need it most, there though when you least need it.

your nightmare hasn’t ended. and it may never end. sometimes you scream and shout and beg to be awakened, hoping it’s but a bad dream. but you know it’s all too real. you cannot simply walk away from this mess you alone created. the mess people blame only you for. because they are just bystanders right? wrong.

you don’t know what to do. you really don’t. and you will continue to toe the line between life and death, until one day you can walk towards one definitively and not look back. then it will be the beginning or the end.