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.


i almost had a meltdown last night (which explains my previous post), because my fibromyalgia (FM) was flaring again. my upper back was in so much pain that breathing was painful and difficult. again. it was so reminiscent of my last major FM flare, that as i heaved with each breath, i feared that this flare wouldn’t terminate. i sent off an impromptu email to my anaesthetist at 2am, telling him that i’ve had enough of these FM flares, and that nothing i did was helping.

today my flares has eased a bit in intensity, but the pain has spread further. my anaesthetist replied to say the he is not in the hospital, and that i can only see him on Thursday (which is when my appointment is). he suggested the Emergency Department if it’s really bad. i told him that it is not an option for me. the last time i went there for my chronic pain, i was treated like trash and it was a huge waste of time.

it didn’t help that i avoided physical activities, which was what triggered my last big FM flare. it happened again anyway, this time, without any physical triggers. i don’t know what to do with FM right now.

my stomach’s emptying is delayed again. nausea and vomiting almost everyday, and vomiting undigested food 8 hours post-meal. it’s really annoying that we don’t know what is causing all these. right now, i can only think that it is triggered by the “stress” which my mind and body is in.

i’m exhausted living on the edge, fearing pain, and fearing that i’ll lose all grip on my mind.

surely there is more to life than drowning in pain and sadness.

lost my grip

it was like holding my breath for 2.5 months, on tiptoes, fearing that had i exhaled i’ll lose grip. and turning blue, i had to let go. take another breath, that i may continue to survive, go about life, and pretend that all’s well. true to my fears, i exhaled, and slumped in exhaustion. i lost grip, the hold on my life. my inhibitions went up in smoke.

i did it again. i fell flat. and i have no bearings as to what tripped me. it is extremely unnerving, to not know what the trigger is. i remain dulled, unable to feel deeply- or even slightly- the emotions that once made me feel more human. more alive. i was asked again and again, why. none of the doctors in the hospital could comprehend why i would be so mutilating.

coming out of the brief hospital stay, i remain terribly dulled. my psychiatrist was painfully honest- i was going to be better off staying in the psychiatric ward at this present point of time. it’s always about my safety. of course i didn’t agree to it. we talked at length, as i tried to inhale as deeply as i can, secretly wishing that by doing so i’d have everything in hand again. but every breath was a half-hearted attempt unconsciously.

i don’t know how long this mess will remain.

reclaiming my life

reclaiming this life remains to be a constant struggle, and in itself begs to be answered as to how i can do so.

i can’t remember what normal is, and i can’t believe that there is a normal anymore. there is always too much, or too little, sometimes none. every single aspect of life has fallen victim to it. there seems too much to regulate, that in the midst of it i lose my bearings and often fall flat. sometimes i return to status quo, most times i worsen and get triggered.

in my admittingly unwilling recovery, i thread on the thin line between life and death. i take consolation that i am still around, and mind you i do so, so that others recognise my effort. but i’m hypocritical that way. i’m alive, but i’m dead. my foot steps into the realms of death more often than not, and i cannot say for sure if i have even considered taking a step towards life. right in the middle it seems, is safer. i can come and go, and you can tug at me. but i’m still here. ambiguous. there seems to be nothing on this earth that could ever make me step across the line towards life, yet i will fall for anything, across towards death. shit does these to you. how do i reclaim this life?

trespassing the body- literally going against self-defense and survival reflexes and mechanisms- ironically became my way of living in a world i disagreed with. it came, and it never went away. too many times i tried to count the good days, to no avail. it was always doomed to fail, because i had to hurt to live. still i tell those who needed to know, that i’m free from such trespasses, in order for them to know that i am ok. i am not. this violent mind will not go away until it learns how to want to live again. until it finds meaning in life and in living. i ask myself if this sabotaging way is the way to go, if this is the way to survive. i know it’s a no. but i don’t know how else? again, how do i reclaim even some semblance of a normal being?

my body claimed its stake on me in illnesses and pain. my body lessens and lessens by the year. its grip on me ever so tenacious. and i don’t know how i’ll ever set myself free from it. time and time again i try to take back what is mine; regain control. but it doesn’t give. it only threatens to be more, and i keep popping the pills and sleeping. this life, and it seems adamant after 2 decades, it isn’t going to let me reclaim it.

this mind, this body, is not mine to take. i exist in it yes, but every living moment is spent attempting to reconcile what is, and what was. each day i live in fear of losing even what i have right now. this is the bare minimum, and if it’s anything less, i will cease to exist. yet, each day spent living and breathing is a dim spark of hope that tomorrow will be better. that tomorrow i will want to live, that tomorrow i will not trespass this body of mine, that tomorrow i will accept this failing body. that i can reclaim my life- the one i lost 5 years ago.

all these, just will not do.

i’m not ok

in the last week, I had a mighty fibromyalgia flare. it was quite unlike any other FM flare I’ve ever had, and what made it worse was that in the midst of it all, i still had to go to school and also rush 2 papers for the deadline that was at the end of the week.

the flare began on a Sunday. the fatigue and widespread pain was so bad i stayed horizontal the whole day. it struggled with that decision because i had a pending deadline and my 2 papers still needed a lot of work. but how else? my body disagreed with being vertical. Monday came, and as reluctant as i was, it meant that i could hardly rest till the week was over. for the first time ever, it took me 4 whole hours to get out of bed.

reality sank in when went about my daily life, going to school, doing my papers, going for doctor appointments and all. i heaved with each breath as breathing was difficult. it was as though my respiratory muscles were too fatigued. my back muscles felt like they were failing, and it hurt to hold my body up and vertical. although this was something i experienced right before i was diagnosed with FM, this was different- my torso felt like folding over because it was also effortful to breathe as my back struggled to hold me up. my neck protested that my head was too heavy a burden for it to carry. whenever i could i was always resting- head on the table, leaning back on the chair, lying down on the floor with my tennis ball- and taking each breath as it came. i popped the pills and tried to maximise all the painkillers and muscle relaxants to no avail.

it was too much to bear. i cried on the bus on that Monday and mustered the courage to asked my community to pray for me. the entire week, i found myself sleeping more than i should. whatever free time i had to complete my papers, i’d spend two thirds of it resting. i was panicking, afraid i couldn’t submit my papers on time. i can’t remember the last time i felt so helpless like this.

i ruminated at how all these came to be. surely there is more to this life than all these pain and pills? the intensity of the flare decreased slowly through the week, to my relief. the week felt like forever. one week after my FM flared, now my problematic shoulder is flaring again. am i surprised?

i shared with my community that suffering ceases to be once we find gifts in it. this is my insight from struggling with RA, and i used it when i nurse my patients. what about now? pain demands to be felt, yes. but does it have to make me so helpless?

FM teaches me something new everyday. but more so, it places physical limits me. when RA pushed and shoved my limits since years ago, and now FM is doing the same, only more. i cringe each time i realise there are things i cannot do. it increases with time, and the bullish me can only surrender.

it’s not ok. i’m not ok.



on Tuesday i was told by my GP i have a quinsy- peritonsillar abscess. it probably came as a complication of the tonsilitis that started from 2 weeks ago. so starting on my 2nd course of antibiotics- clarithromycin- i finally surrendered and asked my GP if i should have it drained. what i thought was a simple case of tonsilitis, and the pain it caused that would go away quickly, never went away and instead got worse in so many ways. so reluctantly i dragged myself to the Emergency Room once more and again.

the ENT doctor told me what he was going to do step-by-step, and it horrified me. before he could inject local anaesthetic, he had to syringe out the pus to locate the true abscess. only then can he numb the area and make an incision. he had asked if my pain threshold was ok. of course i said yes! justified it with my medical background, but i know he didn’t believe me.

in went the needle the first time, and with my mouth open and the needle in the abscess and screamed and teared. it was excruciating. it didn’t help that it had to happen again when he had to numb the area twice. i was cursing with what i could manage. the doctor even asked me if it is that painful!!! when he took the scalpel to create the incision i dreaded it. but there was no pain. there was relief even, as the pus came out.

but the twist came when he had to insert a pair of forceps into the incision to stretch the tissue, and in my own words aggravate the “pocket” that has been created so that as much pus can be drained. at this point, the doctor while staring into my mouth, said that he now actually believes why i said my threshold of pain is high. and he was surprised that my threshold is even better than most guys. DIDN’T I TELL YOU MY PAIN THRESHOLD IS HIGH? haha.

i found it rather amusing actually!!!

i feel rather relieved that IV antibiotics are not needed, and neither are scans nor admission. my throat has never felt better in the last 2 weeks. but as the LA is wearing off the pain is returning. the incision is at least an inch long, which took me by surprise. i just hope that any pus doesn’t collect again, and that the pain won’t be as bad as having the quincy.

seeing the ENT doc again tomorrow for him to review. aargh.