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.

*sigh*

quincy

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.

jabbing the head

i saw my anaesthetist on Thursday.

i had occipital nerve blocks- he injected bupivacaine and triamcinolone on both sides at the base of my skull (the occiput) around the occipital nerves. and boy, of so many jabs i’ve ever had in my life, this was one of the worst that i exclaimed in pain. he told me that the space was very tight (after he introduced the needle).

my headaches have become very chronic in nature, much to my dismay. and almost always, it originates from the occiput, only to radiate to the top and sides of the skull. my neurologist says it’s nothing. my painkillers do nothing, and i understand opioids are not the best option for tension headaches. so i’m grateful that my anaesthetist is more than willing to help me with the pain.

he had told me that while i was being treated for my burns in the other tertiary hospital, the anaesthetists there called him. apparently he is quite close to the Anaesthesia Department there, he said. and they brought up the issue to him that they thought i shouldn’t be on oxycodone (for my fibromyalgia). he begged to differ, as he related it to me. he knows there are grey areas in treating FM. of course my anaesthetist had resolved the issue of their differing opinions by himself without affecting my usual medications. but i guess i now understand why i faced so much resistance for pain management while i was there.

i related to my anaesthetist that actually in FM, everything seems to be grey. all i got were nods.

i always have a problem recovering from nerve blocks- despite the local anaesthetic, the injection site will still be very sore for at least a day. with my occipital nerve block, it’s been a little over 3 days and things still seem a little wobbly. it’s still a little sore, i still get a little headachey, but i’m hoping it works out for my chronic headaches.

fighting tonsilitis and pharyngitis for more than a week, and i just want it to go away!

school. again.

after a hiatus of 3 odd years, i returned to my books yesterday as a psychology student.

admittedly, it has been painful talking to people about me studying psychology and although i’ve been talking about this since May, it hasn’t gotten any easier. i’ve talked to my psychotherapist about it, but we aren’t sure why i feel like that yet. but right now, i know i don’t feel the same for psychology as i did for nursing. i don’t know if this is a mistake.

perhaps i’m struggling with putting down my identity as a registered nurse. about 8 years has been spent into forming everything i am as a nurse. and in a strange way, i was also nursing the sick me at the same time. it’s a strange sense of loss which i’m not sure i can ever get over with.

could it be my anxiety over my inability to control or know what will happen over the course of the next 2 years? or could it be my fear that history(a lot has happened in the past 5 years) could repeat again, especially when my depression started in nursing school?

there is a certain sense of uneasiness going into my studies, although there is some relief now that i have settled on something. i don’t know if it will ever go away, and i don’t know if i will emerge out of it unscathed.

but oh well. life’s like that. no?

knowing my limits- what limits???

it’s been a continuous process learning what my body can do and what it cannot. of course i delight at the former, and curse and swear at the latter. but because RA and fibromyalgia can be very dynamic diseases, i’m never really in a steady state. what i was able to do, say 6 months ago, i may not be able to do now. what i’m not able to do during flares, might be doable when i’m ok.

last week as i served for the Treasure retreat at the Office For Young People (OYP), i was so physically stretched that my body’s response to the exertion was almost like an awful whiplash. because it was a 3.5 day thing, and i had to travel up and down (due to the lack of space for sleeping in), it was a tall order to tell myself that i will not bail on it. i had made the terrible mistake of not knowing what i should not do, even though i’ve been living with this lousy body for so long. i did everything like everyone else. i made little excuse, and the perfectionist in me refused to take the back seat to rest when everyone else was working. i paid for it with each night i got home. i was cursing and swearing, almost at the brink of tears, spamming painkillers, taking long hot baths, desperately looking for a much need reprieve. this time though, i had realised that it was more of FM beating the crap out of my body than RA. on the last day, it ended with a bang with a headache that felt like my skull had cracked.

after realising what i got myself into, i made a forecast that i will need about 2 weeks to recover from this FM exacerbation. this was no code blue, but suffice to say it was 3 days of 14-hour service (7 on the first half day) at OYP. i tell myself these casually, but there’s also my reality that i need to face. i just don’t have the body that i used to have anymore. it was something that i had to come to terms in 2010 when i retired from dancing, perhaps i just didn’t want anything else to stop anymore.

the compounding fatigue and pain from RA and FM can threaten to throw me off into a dizzying tailspin, and with that, my depression can get caught in it very easily. i keep refusing to accept the changes in my body, just as i have always had difficulty reconciling with the fact that i have RA and accepting the disease process. i keep pushing my body beyond its limits, and with each time i beat myself up for the same thing- not knowing what my body can do. there are certain things that i will always do no matter what, like code blues. but for the rest, i just wished i could be kinder to myself.

i don’t know what i’m rambling about really. aargh.

ain’t healing well

my full thickness graft has taken, according to the doctors. however, about 10-20% of the graft looks like it will not hold. these parts have been slough, some of it have fallen off, and now the doctor is saying these 10-20% of it looks like it has pseudomonas.

i told them i am not optimistic that these parts will heal properly because my immune system is down from MTX. once i said so, the other doctor scrambled to check my records. they had overlooked that my MTX hasn’t been stopped. so the doctor had to do debridement that day with some.iodine scrubbing, in hopes it heals in a better condition.

because right now the options i have is to either just let it be, or go back for surgery. for the former, it will be long drawn with high risks of infection and worse scarring than the rest of the graft. for the latter, it might not be only one surgery. it can be more than that.

how did things get so complicated? just because i “danced” in fire? nursing it with silver dressing now. hoping for the best, and next Monday, i’ll probably know when my original senior consultant (who happens to head the department) sees it and gives me the options.

sigh.

a fork in the road

time is running out.

it’s odd how i was so sure that i am headed for studies after leaving nursing, only to be interrupted by this outrageous thought that i should still chase after the call to serve in mission work (this call is not new, you know). suddenly the 1.5 months of free time i thought i had was no longer. it became a period of surrendering, and then also falling, in my desperate bid to discern what is to be. i want to do God’s will and nothing else. yet i am conflicted- there are push and pull factors for both paths. and i am only too human in trying to make the decision, that i halt in my tracks and wonder if i’m listening to my selfish wants, or the will of God.

having failed miserably previously in sourcing for missions in which i could serve, God blessed me this time with 2 missions. i have met and talked with them and there are opportunities to serve. the ways in i could give are aplenty- mostly with what i am blessed as a nurse. but i ask myself if i am able to give. to keep giving and not want. to keep giving and not receive. however most importantly, i have to face my reality and ask myself- can i ensure that i do not regress psychologically? and also, am i up to it physically seeing that my health can be rather vulnerable? i have people telling me straight in my face that that i shouldn’t do it, mostly because i’m not yet up to it. however deep inside there is this doggedness that keeps pursuing, as God keeps providing, when i continue to communicate with the 2 missions with my role in Myanmar and Philippines.

my plans for studies were almost cemented until it was plucked out by the radical thought that this time i could really dive into some mission work. since then mission work has always been winning the battle of “what Steph should do”. although that was the case, right now, writing this post, i am so close to giving up and saying yes to studies. the deadline for accepting the offer is close by, and classes start merely 2 weeks later. however the thought of 2 whole years of study makes me anxious. i just spent the last 3 years fighting to serve the sick (and/or my calling) and now i’m spending 2 years on upgrading myself? i don’t know why there is this shift in mindset but that sounds awfully selfish. also, with the dawn of my depression coming from nursing school, returning to school is a frightening thought. i am hesitant with signing my letter of offer, as i shared with my psychotherapist, because after the past 5 years, i don’t trust myself with such decisions anymore. with all the decisions i’ve made since i fell into depression, there have been many things that have gone awry. too many actually. and i cannot convince myself that i am making the right choice once more.

i know that i’m living in God’s time, and things cannot be rushed. one simply cannot just choose to do something for the sake of it, as i’ve learnt. God will make a way, and He will tell me what it is in His many ways, if i would only wait, listen and pray about it.

i’ll be spending the next 4 days serving in OYP’s Treasure retreat. it’s a time to give back, to serve, to give and not to want. and of course, it’s precious time with God. i have to make my decision by the end of the retreat by the way. sigh.