Tag Archive | amnesia

the death of me

i took 3 days off after finishing my last modular assignment. it took me so long to get back to work, to return to continue working on my thesis, because i was in sheer denial. i was utterly convinced this is the thesis which will destroy me. i sat down today reluctantly after taking Ritalin; Methods. how do i write this damn thing. i don’t know how. with every word i typed, every sentence, i balked quietly. it wasn’t academic writing. it was mere schoolgirl writing. i couldn’t find words and adjectives. thesaurus has been my best friend but even it fails. the most gob-smacking experience today was when i wanted to include descriptive statistics in my paper. i remembered that when i met my supervisor, we didn’t do it. so i prepped my data for analysis, but realised i might have missed out on one piece of data. did some checks, tried to really recall if we did anything about it. nope. so i messaged him and asked him and all. i didn’t even need to provide him with any hints, but it was clear as day to him that we did a whole host of stuff with the”forgotten data”. i had NO MEMORY of it, while he tried to convince me that we did this and that with it. i apologised. (and although i told him “ok!” i still don’t remember anything). this was only 2 weeks ago!!!

it scares me, to be honest. i was actually starting to think, since my last post, that my memory is either getting better, or it isn’t as bad as it seems. then today… i tried talking about this to my parents or close friends, but it seems so unfathomable? i don’t know. nobody understands that actually, before 2010, my memory was something that i was really proud of. my memory was fantastic, until the currents over the 7 years, then this really is the worse i’ve ever had…  and i don’t know what to do.

*slit*

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again

it’s probably nothing.

but 3 days ago it suddenly dawned upon me like some revelation that something was wrong. the failing memory seemed pathological. my knees have been buckling more. i have been experiencing an odd loss of balance. when pieced together they pointed to the brain as the root cause. i was reminded of last year when i had weakness and numbness in my legs and the neurologists had to rule out Multiple Sclerosis. they did, but my left leg remained weak since. the MRIs of my brain and cervical spine showed suspicious “spots” which the neurologists said could be nothing, but at the same time they also could not be definite about that.

2 days ago, i was due to see my psychiatrist. i asked him about the amnesia- the word finding difficulty and problems with memory recall which happened some time after my last ECT. he said it was uncharacteristic of ECT’s side effects, and he ruled out any possibility that my diagnoses, medications or ECTs were causing such amnesia. he also thought i had a malar rash actually. so he told me to see a neurologist and my rheumy and ask for their opinions. after that, i promptly got a referral and appointment to see a neurologist.

yesterday, within less than 72 hours of figuring things out, i saw the neurologist. he looked into my previous MRIs and agreed with the doctors last year that it didn’t look like MS. he did a full neurological exam, and said that my symptoms are manifesting rather mildly. and i agree, although it still affects my daily life. he noted hyperreflexia (though not to the point it is pathological), coordination problems and limb weakness. however he was most concerned about the memory.

so we are going to repeat the MRI with contrast. honestly, i don’t expect any changes in my brain imaging. i seem to have this propensity to have physical symptoms without proper evidence, as shown with my struggles with my rheumy and my RA over the past 10 years. i struggle, but because there’s no evidence it must not be real. i don’t have any expectations that these issues, especially the amnesia, can be explained and/or treated, even though i am mad desperate because my final exams are in December and i don’t remember shit about any thing i have learnt since April. in a way, i’ve given up. resigned.

so yeah. it’s probably something. but it’s probably nothing at all.

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

with every breath

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it has been a tough many weeks for me.

i spent the entire time holding on to my faith for my dear life.i feared that had i let go even a little, i’d completely lose myself or my life. it was not a time to compromise.

i had gone for a surgery, and then transferred to a psychiatric hospital/ward. i was quite sick i suppose. because even 8 electroconvulsive therapy(ECT) sessions didn’t make me better. i was discharged by a doctor whose clinical judgement is extremely lacking.

what happened next was a disaster. i ended up in the hospital’s high-dependency ward, clinging onto my life. at my worst i was only breathing a mere 4 breaths a minute. when i was better, i was yet again transferred to the psychiatric hospital/ward. i tried to make it all go away again with ECTs to no avail.

till date, i’ve done 56 ECTs in my life, and my memory is failing fast and furious.

meltdowns i had plenty during my admissions. be it tears or blood, i could never really hold myself together. and when they asked me what i’d live for, i could not answer them. i’d also a fiery temper, and got into trouble a few times. twice, i fell from a certain height while in the ward. i ended up with a really badly sprained ankle, and many bruises. in these admissions, for the first time, i had to be sedated several times with IM Haloperidol, IM Promethazine or IM Lorazepam.

here i am, discharged once more. i don’t want to go back in there. i don’t belong there. whatever personal crises i’ve had, they are over now.  and because of all of these, i’ve resigned from my job and i’ve deferred my studies. my parents have been telling me that i’ve been too hard on myself.

really? i don’t know. i am only trying my best to exist. every breath i take is every breath loved by my Lord.

 

 

 

 

*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???

 

what’s up

so here’s what’s been happening:

  • my RA has still been active. since my transaminitis has resolved, rheumy has decided to restart MTX at 10mg and we’re crossing our fingers that i don’t get any transaminitis from it. SSZ stays at 3g.
  • my piriformis stays inflammed for 14 weeks till date. because any diagnosis with the piriformis has to be of exclusion, we decided that we should go ahead with an injection of triamciniolone into my greater trochanter. if it helps, good for me. if it doesn’t, then we will have to go from there. it helped immensely in the first 1/2 hour, presumably because of the lignocaine. but once it wore off, damn it hurt, my hip. aargh.
  • my axiliary lymph nodes have been enlarged for 7 months till date, and it has been worsening. i finally mustered the courage to ask rheumy if it is of any concern. i monitor it everyday, but when she started to palpate it, she couldn’t feel much. but she ordered a CT scan of my thorax anyway. i should think it’ll be fine, because i have no family history of malignancy. i, and maybe she, needs to be reassured that it is merely nothing like what i make it out to be (bordering on the hypochondriac side haha). and I WILL BE FINE. yes.
  • just when i thought my ferritin level has normalised from 6 to 17, rheumy told me that the ideal is 40. such killjoy. and my TIBC is still abnormal. so back to IV Venofer i go. just one dose for now, but to hit 40? i think it’ll take another 2 IV doses on top of the already planned one. mehhhhh. serves me right.
  • my psychiatrist has weaned me off completely off pregabalin, quetiapine and zolpidem. and thus my pain and anxiety levels have sky rocketed. my rheumy disagrees and wants me to go back on a low dose of pregabalin to help with my pain. so that remains to be contested.
  • he increased my lithium in a bid to flatten my affect because he thinks i’m too reactive, and that my mood swings too much especially at work. he also added topiramate, which makes me amnesiac reminiscent of post-ECT amnesia. except that i cannot for my life recall vocabulary that i have known for so many years of my life. bah humbug.

it has been difficult juggling my health issues. and with work back in the picture, the difficulty level is something that i cannot handle. it is not something i can share the burden with. my rheumy understands my physical health. my psychiatric team understands my mental health. both parties are unable to integrate each other and see me as a whole. my family tries to be there. but i am really all alone. i try and i try so hard. there is no where to go. only forward. (my kindest doctors like my rheumy and cardiologist always remind me to be a good girl, and to try my best to not ‘go crazy’. it sounds insensitive, but i guess they only mean well.)

sigh.