Archives

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

Advertisements

a little reminder from God

today, unexpectedly, God spoke to me while i was in church. while it might seem trivial, but i felt very strongly about it. it was also reminiscent of a similar situation that occurred a few years back when i tried feebly to return to church (Novena Church).

at the end of the Mass, an announcement was made asking for a doctor as someone has fainted. i saw someone responding immediately, and guessed he was a doctor. i went looking for where that person might be once the priest exited. it happened that she was a friend of a friend’s. while she did not lose consciousness, she got physically very weak. the doctor asked her a series of questions, and what stood out was her history of gastrointestinal symptoms. because he was a male doctor, he couldn’t do a physical examination on her. he kept asking her to press on her abdomen to see if it elicited any pain. till that point everyone else, including me, were just bystanders. i wanted to let the doctor do his thing. but by then, i stepped in, told the doctor i was a registered nurse, and asked if i could help palpating her inguinal area. it was evident that it was difficult for any lay person to be palpating in the right regions, and with enough depth. he was glad someone could actually properly palpate her inguinal area. pain was elicited when i palpated her right inguinal area, but nil for her left side. it confirmed his suspicion of appendicitis. she was shivering too, despite a sweater over her. she told me she was still feeling cold, so i took off my thick sweater and laid it on her. i did this despite knowing my scarred arms would be bared for all, even the doctor, to see. but nothing was more important than the wellbeing of a patient, that i knew. we stayed with her till the ambulance came, and i reported the findings of right inguinal pain to the paramedics. i stopped short of reporting rebound tenderness, although that is characteristic of appendicitis, because i did not palpate that. but seeing she was in good hands, the doctor and i left.

throughout the whole situation, and after that while i was in the adoration room, i cannot help but feel a stirring in my heart. again it was the same stirring i got a few years back. i felt like God was reminding me of what He first called me to be- a nurse. whether or not it was a push to return to nursing, or if it was a reminder of my identity as God’s child and my gifts that were God-given, i do not know. but i know this will linger in my mind and heart for a long while.

i’d give anything to go back to nursing, but i’ve tried very hard and subjected myself to a lot of scrutiny and “abuse” because of my mental illnesses. it remains to be seen if i will return to nursing one day. maybe one day i’ll be well enough to go back, barring my scar-laden arms.

thank you Papa God, for reminding me of who i am, and the fire that burned so brightly in me once upon a time. this calling is something i can never forget, and will continue to pursue, even if i’m studying psychology right now.

strength in falling

i heard it again, those dreaded words.

her words, “you have to be stronger than this!”, was tainted with an oddly familiar sense of disagreement and resentment. it came when tears rolled down my face. i was just relating to her how much difficulties i’ve been facing with the Board.

i went through the roof while trying to stay calm- i punched the walls many times with a fistful of anger after leaving the premises. how many times do people want to tell me that i have to be more, only presuming that i have been less all the while? and so how many times do people want to murder me by implying that my situation (and hence a reaction to it by crying)  is caused by my “weakness”? it’s a double whammy because people want to believe that my situation is caused by my “weakness”, and so is my emotional reaction too!

to the the abominable people who give me such “unsolicited advice”, you don’t know what i’ve gone through to stand before you. you don’t know the storms i’ve weathered, nor the dark abyss i’ve clawed out of. you don’t know the pain and the darkness that wholly consumes me, while i hold on with hope so fragile, to fight for that glimmer of light to show through. you just don’t understand.

you don’t get to trip me over, and then mock at me for not being “strong” or “tough” enough to pick myself up while I’m hurt. i’m allowed to weep and cry because of the pain, the loss, and the grief that i experience, without being put down for it.

people keep telling me that i need to be “stronger” and “tougher”. but they do know that there is strength in falling?

25

image

i’m struggling with my 25th. birthday’s aren’t special anymore (like i’ve said for the past few years). they are a stark reminder of my morbidity and mortality. they make me question my life and my suffering, and for how long more till it everything ends. i seek for the real Steph. the Steph i lost 5 years ago after falling into depression. year after year however, i am more convinced that Steph is gone for good. that the Steph that i am now is the one i have to settle with. and that it will also deteriorate.

in one year i’ve learnt so much about myself and about people. it can be heartening, but more so it makes me disillusioned. i exist with the pure aim of preserving my life. i try to build upon that a life of love and giving, of hope and wanting, and of course growth .

putting back the pieces hasn’t been easy; it’s a sore understatement to say so actually. i’ve tried to learn to accept myself for what i am, and not identify myself for the illnesses i have. i experienced acceptance and rejection in that. more for the latter, rare for the former. i see the kindness and empathy of people, but also the cruelty of reality. i want to see mankind beyond their darker side; there are people who are saving graces, but the rest destroy that ideal of mine. and so you see that as time passes i grow more bitter and disillusioned.

i’ve had to deal with radical changes in my body. weight gain. fibromyalgia. more pain. more medications. i do what i can to cope, but i find myself being unable to. the basis of my suffering with RA first has not been grieved for properly, and simply having to deal with concurrent illnesses and being slapped with new ones, i cannot take it all in. in short i am struggling still, after so many years. i am battered and bruised, i try to be ok with it outwardly, but the dissonance is terrible. in the past year i’ve been more open about the crosses i bear, yet i am clammed up about my pain. i’ve begin to realise that putting up a facade of being well, especially at work, cannot sustain. it is cruel to the self.

recovery for me has a steep curve. from having to hurt myself to none at all. from relying on others (the doctors and hospitals) to save me i’ve begun to save myself. the notion that things can actually get better, that after the rain comes a rainbow, is still  very foreign to me. i dare not be hopeful because things always turn out otherwise. but i’m still learning to do that and yet still be hopeful. how do i do that, i don’t know. i’ve learnt to be gentle to myself. to be loving of myself, of what others cannot give to me. i am now said to be better than i ever was since 2010. but there are still dark clouds lurking, threatening to give thunderstorms and lightning. i am always wary that recovery can be lost to almost anything. it’s in such a precarious state. i never stop wondering how i can hold recovery in my hands, yet not drop it while the rest of my body and mind rebels.

again the aim is self-preservation, and no one can hold  my recovery in their hands. it’s mine to hold and my responsibility to bear.

i have been so blessed however, to be a child of God, a bride of my Lord. experiencing renewal in my faith, and returning to God. i have received so abundantly and so freely, i am loved in spite of my sins and transgressions. what i can say, is that in the last one year, returning to God was the most joyful. because of Him i could live a bit better and love even more. He sustains and heals, and i cannot ask for more.

i’ve been told a many time that i am an inspiration to others, for the things i do although i struggle with my circumstances. i’ve also been told that i am a great nurse. i deny them because i feel i am not worthy and deserving. but i am learning to be accepting of what i am, and the difference i make to others.

i am 25. i’ve lived a quarter of a century. i am shaped constantly by this life i live. and while i hate celebrating birthdays, i must because i am still here. nobody knows if i will get to live till my next birthday. i don’t know what the next one year will hold for me. the possibilities of regression and deterioration are real. however the hope of a better life and healing is always there.

i want to live more and love more. to give selflessly, and not ask. to keep choosing happiness and say no to what brings me down. i want to serve my Lord, and do His will.

Happy Birthday Steph. Stay hungry always.

lived and loved

i guess now that it is unofficially over, like really over, i feel all kinds of emotions. i didn’t think a source of such great joy could become so painful, physically and mentally.

i guess i could say that since i’ve gotten squarish piece of paper, i’ve held my breath so hard till my face has turned so blue- my future was balancing so precariously. i fought so hard i almost lost my mind; through tears and anger, with gentle acceptance and then disillusionment that hardens a heart… it’s a kind of liberation i never thought i’d feel. the deadweight i’ve been carrying, this squarish piece of paper called our nursing license… i will put it down and not want to have to touch it again. until I know for sure that this precious thing can be featherlight once more…  i can breathe again i guess. no more heart stops.

and i guess it’s a sigh of relief for me. it’s been such a prolonged torture of since i’ve been down in 2010, of mostly rock-bottoms and a few short-lived highs that those who love me have been asking me to leave nursing. all i’ve ever said is that it’s my calling, and i’ll not do anything else. it’s a push come to shove thing. it has put my life into perspective for me. the last 5 years of nursing (the last of nursing school and then being a registered nurse), a whooping 2.5 years were spent inpatient. it speaks volumes of how sad and sick i am/was. and continuing it will not make it any better. in fact this job i’ve just left, had me in the hospital suddenly after 500+ days out, just because an incident was poorly handled. people can say whatever they want of me.

but for my dear friends who know how much i’ve gone through, how much i’ve fought through these years, and how much i love nursing. i’ve done everything in my best capacity as nurse. i loved as much as i could, to my patients, and i hoped that with it came healing. i hope it is enough for now. i daren’t even ask that it should be more than enough. how can i? with it all the expectations i have for myself, the ones i thought others had of me, can burn now. everything i hold myself up to- all the knowledge that i needed to know plus CNEs and EBNs… all these have been so burdensome, that even my fiery passion cannot make it any lighter. i can put it all down now.

yet it pains me greatly. that i am choosing not to serve my Lord out of my selfish want of happiness. that i am not doing what God had created me to do best, that is purely for the cause of my patients. and it is just because workplace colleagues and supervisors are always pricks, and workflows and SOPs are always so messed up. that these added up together just undermines a person’s values, morale and dignity. for years i’ve trudged forward knowing that i am serving my Lord right from when i heard my calling. putting this down is not so much a difficulty for myself personally, as it is for me spiritually.

(i’ve decided that should i ever work part-time while i am studying, damned i’m throwing the license out of the window. it gives me a higher pay no doubt, but the weight on my shoulders isn’t worth it. nuh-uh.)

i’ve lived and i’ve loved. what more can i ask for?

on thin ice

i’m at the end of my line.

i am literally dangling at the edge of a building. and i know people will call me out for being melodramatic, including my doctors. but really, this is where i have to say, i feel like i am being trashed head-on with first my body (RA and FM), and my mind. and in the midst of it all, i feel nothing but helpless.

in the past 2-3 weeks… i see myself running away, wanting to leave the place i call home behind, refusing to face my family face-on. i see the knives in my heart from the words of friends and colleagues, and still i refuse to stem the bleeding. i see myself driven to desperation with an age-old problem, and getting angry at the situation where no one wants to help when i’ve finally let my guard down, and then crying because it has been all too futile. when i should know, that all my life, everything has been futile. i’ve cried too much these few weeks. at home, at work, during consults, on the buses and trains. i can’t seem to hold them back; everything seems too much to bear.

it is at this point where i am honestly, trying everything that i can possibly do, to keep myself sane and functional. and then for the rest, leaving it up to the doctors, if they can, when they can.

my psychiatrist seems to see me as being threading on thin ice right now. and that’s why for the 2nd week in a row again, he readily gives me medical leave from work. i didn’t utilise it last week. this week i am using it though. work has been cruel, and my body is rebelling from doing a lot of cradle nursing. he appreciates my efforts, no matter how they can be dysfunctional sometimes, to cope. because it hasn’t been easy to keep myself safe and my body from bleeding. and perhaps it is because of his empathy that i expect most else to be like that.

and that’s how, being helpless and leaving it to the doctors, i got slapped in my face that nobody really gives a damn about my struggles. it was the cold, harsh reality again (although i have always known it) that a patient can do everything she can, but when her doctor wants to be a dick, what can she really do?

NOTHING. except to yell in their face as politely as i can.


my mind is in a dizzy frenzy since finding out that i have rotator cuff tendinitis. i have many questions, and i think that some of these questions don’t have answers. and how i’m at the end of my line precisely because the triamcinolone injection into my shoulder yesterday doesn’t seem to be work its best. i’m still in pain. i feel fucked up for just wanting to go into surgery already.

  • if RA is the culprit causing my rotator cuff tendinitis, why is it not responding to anti-inflammatories, and very little to steroid injections?
  • if this is my 10th year experiencing the same shoulder pain/involvement, does that mean that my rotator cuff has always been affected?
  • is there anything else in my shoulder that is pathologic? synovitis? bone spurs? hooked acromion? is an MRI really inevitable? or can i just do an x-ray?
  • can i skip the physiotherapy and just do surgery already? this shoulder has been hurting for 10 years, i’ve never really gotten a remission even from it, it has gotten progressively worse not only just this year but already insidiously in the past 2-4 years. and if i cannot be pain-free now to do physiotherapy because i am not responding to medications nor the injection, how else?
  • if my request for surgery is rejected, how will i be managed medically? looking at how i’ve been managed by my rheumy for the last 7 years with almost every visit with complaints of shoulder pains and it being ignored… and also looking at how i was managed when i presented myself to the Emergency Room and subsequently the Acute Pain Service. if i am managed medically and the pain persists, can you reconsider your option of denying me surgery?

personally i’m one who needs a lot of control. i want to know as much as i can, especially with a body that i am living in that hasn’t been very functional. i want to be able to have a choice to say that if i disagree with a doctor and his opinions, i will go to another. and i want to be able to look and look until i find someone who is in tune with the goals i have for my body. it upsets me when suddenly i am thrown something that i could have known 8-10 years ago, but because i’ve been repeatedly dismissed it has not been discovered. and although something was done in 2011, something unrelated was found; ultrasounds can be very operator-dependent. i continued to be dismissed until last year that i was given steroid injections, which helped tremendously. but for the length of time it helped, i was told it was too short that it lasted. too fucking short.

i don’t know if i’m angry with myself, or if i’m angry with my rheumy for this. it’s easy for her to dismiss me- i even wonder if she ever documents all my complaints of shoulder pain at almost every visit i see her. but i don’t know if she ever knows how it feels for me, having to put up with the pain, trying to look for answers amidst all the chaos within it, and then blaming myself anyway for being “weak” and not “strong enough”.

all these questions i’ve written, i’m putting it across to her, although she is no orthopaedic surgeon. i need her to answer them with as much honesty as she can. and i need her to make suggestions for solutions and for referrals. i need to know that when it comes to such a point, she knows how to handle me and my disease. and if she doesn’t know how to, i really need to look for another rheumatologist to move on to. with her disappointments have neen aplenty, triumphs too few to mention.

for now i still need to grit my teeth and bear with the pain. i’m moving it much less, and if i can i don’t raise my arm at all.

sapped

just 4 straight days of flares, while i’m working and also the quite a first since i went back to work the ward, i am feeling absolutely miserable. the pitiful Celebrex doesn’t work!

the time passes so slowly and thus my pain seems so long drawn. i guess having been in a near remission state for so long makes me so accustomed to it that my threshold is much lower. but it’s not that my threshold is any much higher at any time anyway. i feel that it’s just a matter of whether i choose to tolerate and/or express it, and whether i am still comfortable.

i’m in a perpetual state of pain, if not, discomfort. i hate it. my wound is still healing too and it’s added pain because it’s healing- burn wounds always hurt. just coping with all the pain makes me physically tired… 😦

RA, why do i never fail to want to strangle you so that you can suffocate and die off? i know though that you are laughing and fun, because you know i can never be rid of you.