my personal journey with Asperger’s Syndrome and Behcet’s Syndrome
Posted in general, hope, journal | Tagged Asperger's, Autism, Behcet's Syndrome, welcome | Leave a Comment »
arthritis subsiding… but slow… yet, wonder why entire lower half of body is aching so much?… especially the ankles… ligaments still super tight… but anyway, so glad i can hobble better today… thankful for small improvements… the diclofenac is working better than piroxicam…
the jaw is still painfully tight… ulcers still painful… but managed to have a decent lunch and nice dinner… dinner with a good friend who came over to help me return my library books… another friend came over yesterday and cleaned my apartment floor… i am very blessed… all i need do is ask and i hv friends coming over to help me…
and perhaps resolution inside is also slowly beginning to breath again… slow… but still alive… hope’s embers still burn beneath the rubble…
Posted in family, fragility, friendship, general, hope, journal, life & death, love, relationships | Tagged arthritis, Behcet's Syndrome, diclofenac, hope, pain, piroxicam, resolution, ulcers | Leave a Comment »
some spunk emerging … the right knee is less painful and the swelling has receded a little, but still very stiff… my right ankle and knee are showing signs of fatigue… but still managed to clean my little bathroom and do laundry today… yay!!!
it was so nice of my gf to bring me the walking stick yesterday… tho it was a little tiring having to make small talk, i know that was just the less socially pleasant side of my asperger’s and out of gratitude i managed to mask that little quirk for long enough… and my girlfriend was quite sensitive to my needs, she did not overstay… it was nice to see again and of course i m so so so grateful for her kindness and care… she is one of the very few friends who hv never offered facetious advice nor sprouted ‘wisdom’ regarding my condition… she just accepted me ‘as is’, and whatever i tell her abt myself without even a raised eyebrow… so despite our differences (she is a highly social NT) we share a common ground – that of mutual respect and acceptance…
i m finally on the way to putting away a too long overdue shadow over me… and even tho there may be never be the kind of peaceful resolution between us that i so longed and persisted for, i must now look inside me to find my own resolution with myself for who i m… and embrace my path once more…
hopes and dreams that i held before hv been destroyed… what is destroyed cannot be repaired… but i will keep hoping for new dreams… new love within me… and new expressions of my dreams and love…
it seems like a good day today…
Posted in fragility, friendship, general, hope, journal, love, relationships | Tagged Behcet's Syndrome, love, Asperger's, arthritis, hope, friendship, dreams | Leave a Comment »
this spunkykitty dont feel so spunky these days… a build up of stressors in the last 2 years… and i thought the previous autoimmune kick was the culmination of it, and that i wld be on the mend soon… evidently the tsunami had a larger wave in store for me… that was just a precursor…
my right knee is now swollen to twice the size of my left knee… and the left is beginning to protest with signs of swelling due to fatigue from overuse… more than 2 weeks already… and before that the back to back flare up cycles of ulcers-jaw swelling-arthritis-vertigo-nausea-headache were a warning of worse things to come…
the university clinic has given me a referral and i’ve to go personally to the public hospital to make an appt for further consultation with the immunology dept… right, how m i to do so if i cannot even get out of my home????? and the hospital, being a public one, will probably give me an appt 2 months later IF i m lucky… otherwise… well… it wld be a long long wait… so my only option if i need immediate care is to go private, which means breaking my piggy bank… or just go back home for treatment, where the facilities r better and slightly (only slightly) less costly… private hospitals back home cost less than the same here, but public hospitals cost way more than here… so take my pick i guess…
i cant get home on my own in this state anyway… so i hv asked my beloved sister to come get me… fortunately it’s only a 3 and half hour flight… half a day’s journey in all…
and i DO feel blessed to hv friends who care… it has been my own quirky reticence not to ask for help that is all… asperger’s? maybe… but this morning, outa the blue, one gf sent me a message on my facebook wall asking how i m doing… and at last i told her the truth… well, so she is coming over with a walking stick that i badly need but dont kw where to buy it from (such things r not so conveniently available here compared to back home – the pharmacists dont stock them and u hv to go to a specialist shop far away in the boondocks… well far away from where i live anyway…)… and another gf who lives in the next block from mine will bring me chicken congee on her way home from work this evening… yesterday, she and her hubby brought me 2 packs of rice drink…
i need to find courage to get thru this… i came here for a purpose… and i must not allow this devastation to annihilate my desire to keep going… i must find a way to rebuild again… from out of the ashes, hv sometimes come true beauty… this is my tiny glowing ember among the debris… that somehow i can find back my own spunk again… i hv come this far despite all my mental, emotional and physical differences… the debilitating pain that has marked all my life must not now drive me to nothingness… i must go on…
Posted in dichotomy, family, fatigue, fragility, friendship, general, hope, journal, life & death, love, questions, relationships, society | Tagged beauty, Behcet's Syndrome, pain, love, courage, vertigo, suffering, help, Asperger's, arthritis, stress, ulcers, friendship, autoimmune, TMJ, dreams, spunkykitty, immunological | Leave a Comment »
is death really so terrible?… i wont kw, becos i hv not been dead before…
two icons from my era – a pop star and a beautiful actress – hv just crossed over into the unknown…
but for me, today, it will be another agonising fight… a battle with pain – body, mind and soul… fighting on as brave as i can be, losing my mind and losing control over things i used to laugh abt as being easy breezy… and longing to find an end…
and today, i will attempt a simple journey… simple for many others, even simple for me in better times… the journey to the clinic to see the doc… but today i need to psyche myself up for it… why?… becos i m suffering from severely inflamed knee – the behcet’s version of arthritis – i hv not been able to walk steadily for 2 weeks now… but i kw i need stronger treatment, cos the drugs i usually use for such flare ups r not working this time around…
then there’s the vertigo – dizziness – which makes things worse… there is constant danger of fainting…
my eyes hv been blurry lately too… i really hope it is not uveitis – another behcet’s symptom which i hv thankfully evaded for the past 38 years of my life with behcet’s… please not now… there r things i hv not yet achieved… and i really wld like to keep the ability to see…
i hv not begun to mention the ulcers yet… but too tired now to go on…
i want my friends to forgive me… i dont want to ask for ur help becos it is too much for me to bear during this kind of experience… perhaps it is my asperger’s quirk… since childhood, i cld not bear the sense of another body near me when i m in serious pain, smell and touch becomes more acute, and the nakedness i feel when in pain in the presence of another person… too much for me to deal with inside that i cannot explain… there r less than a handful in this world i wld hv asked to help me… but none of them r available for the asking for whatever different reasons… so let me do this alone… for now… do not feel rejected, know that i hv u in my mind as i go along… and i will keep u all updated…
i long for an end to this… the pain within that has turned me into an unrecognisable twisted creature… the pain in my body that is crippling me… but for me, the end did not come today… and so i hv to keep going on…
Posted in dichotomy, fatigue, fragility, general, journal, life & death | Tagged arthritis, Asperger's, Behcet's Syndrome, death, friendship, pain, ulcers, uveitis, vertigo | Leave a Comment »
tmr will be a one legged marathon… nah, not a competition, just a personal battle… gotta get myself to the doctor… but the clinic is far away… well an hour away… short bus ride, then ferry, then cab, then walk up a floor of stairs, then lift… all that with a severely swollen right knee and a weak left knee…
my back aches and so do both feet… and thighs and calves… the jaw is tight again from the pain… and i can feel the ulcers popping back up just as they were beginning to subside a bit… right shoulder blade is also painful… vertigo… ear ringing…
depression been so severe now… it’s a long long time since i hv felt happy… tho i m still managing the laughter and humour in my superficial interactions with friends on the phone and emails…
secretly, a part of me wants something to happen… to end this terrible ordeal… this physical, mental and emotional torment…
but for now… it’s bed time… and tmr’s one legged marathon…
Posted in fragility, general, journal, life & death | Tagged Behcet's Syndrome, pain, vertigo, tinnitus, arthritis, headache, ulcers | Leave a Comment »
feels like i exist in a totally different time and space… yeah… like the name of the autism website “wrong planet“… i m in the wrong planet… i hv tried so hard to make sense of relating… to navigate independently this crazy mine field that others seem so adept at navigating… sure there r little explosions along the way, but they seem to be able to either jump out of the way in time or survive the explosions as if these were just part of everyday life… and i m told yes they r… relating has its ups and downs, pple play games, some with bad intent, others with good intent, and yet others with no intent, just aimlessly knocking around… and so its no big deal if accidents happen along the way… just pick up, dust off, and get on… ok… i can understand this intellectually, but no matter how i try, i cant ‘get it’…
it is a complicated game to me… i hv no intuition for games of any sort… unlike many other aspies, i dont even like computer games… let alone relational games… i m a lost child… without a voice…
bunnyblu’s scheherazade posted a story abt an aspergian’s relational experience… a children’s tale with an age old ring of agony… “mind blind” by scheherazade… yes i feel like the little duckling… sometimes i feel like running amok and screaming “will somebody tell me what to do instead of what i oughta hv known?”… but nobody will do so… nobody wants to take responsibility for their words… they just say whatever comes into their heads and too bad if u take them seriously… cos that is not how the game is played… so HOW is the game played? pray tell me…? but no one will…
Posted in fragility, friendship, journal, questions, relationships, society | Tagged Asperger's, fear, relating, relationships, Scheherazade, Theory of Mind | Leave a Comment »
broken pain wrecked body… empty tortured twisted mind… it is over… these dreams i held so dear… i dont think i hv the strength anymore… i hv left it for too long… it feels as if all remaining energy and strength had been poured into surviving these 2 torturous years… and now when the nightmare is finally over… i hv no more within me left to give to my dreams… i hv it still in my mind… i kw vividly what it looks like, how it unfolds, i hear the sounds and imagery, i feel the movements… but i m unable to bring forth this birth… i fear… that it is over for me… i m dragging out the time… living in a state of suspended unreality, split into 2 irreconcilable entities… destroyed…
Posted in dichotomy, fatigue, fragility, life & death | Tagged depression, destroyed. broken, dreams, illness, pain, strength | Leave a Comment »
the pain is so crippling… i hv not had such a severe flare up of arthritis in my knee for a very long time… it has been more than a week now… this time… but just another in many back to back cycles alternating between ulcers and arthritis… and the jaw is perpetually tight nowadays… and there is a constant aching, like rheumatism, all over my legs and feet…
and the pain inside my soul… a swirling mix of despair, self-hatred, suicidal thoughts and utter helplessness… no i dont think i will ever get to the point of actually doing it… i hv too much fear of more pain… and what happens after that?… but the thoughts are swift as arrows piercing my screaming mind…
so is this my destiny?… locked inside a broken body twisted with pain, trapped in a mind that is wired in a way which nobody around me can understand… but it is just him, just him that has caused me so much grief… why?… nobody understands me, but i dont hv so much longing for them to… i m glad that the very few who love me just accept me… and i feel blessed… to kw i m of value and worth to them… but him… why do i want him to value me at all?… perhaps becos i see in him a reflection of myself…
i m split into two persons… i seem as if i m coping so well despite the physical pain… i live alone and i dont need anyone… i hv not even asked anyone ever to buy me groceries… i hv been eating from the cans i hv stored up for a time such as this… and i managed to vacuum the floor albeit slowly… when friends call me, i sound cheerful and reassure them that i hv my depression well under control… even my psych tells me i m doing fine… just keep at it… but beneath the happy polly act, the strong spunky act, i m breaking down, disintegrating inside… behind the closed doors of my isolation, i m crying all day , i feel i hv nothing left inside me to go on, and i m so so so tired… i just want to lie down and die… no dramatic pills or jumping out the window, just begging God to rock me to sleep gently like a baby and take me away into His arms of comfort… i need a daddy… i need to FEEL loved… the bible is no use to me… printed words which cannot hold me, touch me, embrace me… like a real father can… why do i want human comfort when i hv divine promise?… becos i m made by divine hands to be HUMAN… flesh and blood with an intense longing to feel, to experience, to vibrate with energy from a combination of sensorial and spiritual assurance of love…
why hv a body that nobody will touch?… why hv a heart that loves too much?… asperger’s… u curse of the weak… the silent scream, reverberating haplessly in a vacuum of mute pain… and all this while… i m pretending to be ok…
Posted in dichotomy, fatigue, fragility, journal, life & death, love, senses | Tagged arthritis, Behcet's Syndrome, comfort, despair, fear, love, pain, rheumatism, suicide, ulcers | Leave a Comment »
dear friends,
i value ur friendship and i kw u care about me… i wish to lead as normal a life as i can… but i need ur help too… becos ur words and actions matter a lot to me…
here r some common comments i hv heard in the last 38 years of my intense battle with Behcet’s Syndrome…
1. but u look fine to me
2. it’s all psychosomatic – all in ur mind
3. u think too much, just be more cheerful, think positive, it will go away
4. just get some sunlight, u dont hv enough sunlight that’s why u r sick
5. exercise more, it’s becos u dont exercise enough that’s why u r sick
6. this kind of illness is for rich ppl with nothing better to do
7. u r not trying hard enough to get better… u dont take care of urself properly…
ok, i kw pple sometimes say such things becos they r uncomfortable, embarrassed to hear abt my suffering and dont kw how else to ‘cheer me up’… or just well-meaning but ignorant … but other times, the same words hv come from careless insensitive pple who hv absolutely no idea what chronic pain and incurable chronic illness feels like…
in any case… here are the facts…
videos for those who don’t like to read:
behcet’s syndrome: don’t worry u can’t catch it from me in ANY way… not even if i kiss u!!!
http://www.veoh.com/browse/videos/category/news/watch/v280155nEnJdpxj
vasculitis: which is part of behcet’s syndrome
http://www.vasculitisfoundation.org/video
fibromyalgia: often linked to behcet’s and other autoimmune conditions
http://www.youtube.com/watch?v=941kVoQh9_s
for those who wish to read more and find out the details:
Behcet’s Syndrome:
http://www.medicinenet.com/behcets_syndrome/article.htm
vasculitis:
http://www.nlm.nih.gov/medlineplus/vasculitis.html
http://www.vasculitisfoundation.org/
fibromyalgia:
http://www.webmd.com/fibromyalgia/guide/arthritis-fibromyalgia
ok… and i hv not even started to mention Asperger’s Syndrome yet… let’s just leave it here for now… this is enough pain information to deal with for anyone in one go…
and thanks for ur love and support… the fact that u r reading this far into my long note means U CARE ABOUT ME AND I VALUE YOUR LOVE…
xxxxxxxxx
hugs and kisses
Posted in family, fatigue, fragility, friendship, general, hope, love, questions, relationships, society | Tagged arthritis, Behcet's Syndrome, comfort, fibromyalgia, friendship, pain, support, ulcers, vasculitis | Leave a Comment »
his last statement to me: “our problems may be summed up as : i cant understand an asperger person, and u cant understand a non-asperger person”
but anyone who loves another will kw, we love that person regardless of differences… and these differences are what make the going so tough at times, but also what makes the journey so specially uniquely sweet and beautiful… and anyone who has loved an aspie and been loved back will testify to this truth…
true beauty is not in perfection… it is in imperfection…
dont blame our differences… we hv a choice to make each step of the way…
i made some very wrong choices… my naive perceptions drew me to believe and trust in all the wrong things… but still, i found beauty in him becos i wanted to see and my eyes were open despite the pain of my wrong choices… i chose to see, and so i found beauty… i chose to pursue the wrong path, and so i found pain and torment…
yet, all the more i m grateful for and treasure so much those who did make the difficult choice to love me, and i m glad i made the choice to love them too…
“What makes the desert beautiful is that somewhere it hides a well.” — Antoine-Marie-Roger de Saint-Exupery
but what makes this well think she is so precious? nay, there is no perfection in the desert… her value only lies in the hearts of those who want to find her beauty… and her waters will be sweet… otherwise… she is just a hidden hole in the ground… and there is no beauty at all to be seen…
Posted in dichotomy, friendship, love, questions, relationships, society | Tagged Asperger's, beauty, friendship, love, relationships, understanding | Leave a Comment »
4 am… woken by the pain… my entire right side hurts like something from hell… right jaw joint, shoulder, hip, knee, ankle… esp the jaw and knee… and the ulcers… excruciating…
lightning flashing outside my window, thunder rumbling… beautiful… sitting here in bed with my trusty macbook pro, my closest and only constant companion… listening to the thunder outside and the hum of the airconditioner inside…
his last sms to me “u have 2 learn how 2 take care of urself”… what irony… but of course, for who will take care of me?… nobody… not him… definitely… not…
does he kw… i wake up in pain most days now… pain inside my tormented soul, crying from haunted dreams in the night, greeting the sun with a grimace and bravely grope for painkillers so i can start the day?… sometime even drinking that first drink in the morning is a torturous mini-event… i live alone, i cannot bear to live with anyone else, who else can i trust to care for me but myself?… cooking, cleaning, laundry, groceries… nobody helps me, becos i cannot deal with having someone else around when i m in such terrible pain… so i m here now all on my own… a twisted comorbidity of Behcet’s and Asperger’s…
perhaps he meant mentally?… yes, asperger’s means i m fragile against the world… too trusting, that was my weakness… a hidden weakness… but i hv no defenses… other than to shut myself back into my ‘act’ and never never again trust anyone…
looks like it will be a long long day ahead… neither acetaminophen nor piroxicam are working… i kw i need prednisolone… but that suppresses the immune system… making me susceptible to infections of all kinds… and i m in the middle of a swine flu H1N1 pandemic… and i hv to go out on monday to face the world – return my books at the library, rehearsal with a friend for a performance, and then dinner with another friend… both of whom are strong, healthy ppl who care for me but hv no idea what it means to be in debilitating pain… and the added stress is bearing up with their well-meaning but horribly misinformed and hence stress inducing ‘advice’…
take care of myself?… pls somebody tell me how to do this any better?
Posted in dichotomy, fragility, life & death, love, relationships, society | Tagged Behcet's Syndrome, pain, Asperger's, painkillers, arthritis, ulcers, trust | 1 Comment »
i read a touching blog post by a mom with an aspie daughter and it struck a chord in me…
i learnt very early how to ‘act’… after one episode of meltdown at age 8 in a new school’s playground, where i was teased mercilessly as a fragile princess, i decided i will be on top of it from henceforth – i became a ‘persona’, the ‘drama princess’… and i did very well at it… and nobody ever guessed that this confident, independent, talented, assertive girl had a deep hidden fragility… it was my ONLY way to survive…
fear? of course… i lived my entire life with hidden fear… but i did not show it… yet, i never felt i cld really be myself with anyone… until… i met him… and he awoke in me all my hidden dreams, things i cld never share with even my closest friends, esp the dream to be accepted as REAL ME – all the wonderful facets of my multi-dimensional existence… and he inspired me… he gave me hope once more…
but then he told me afterwards, it was just “a fantasy”… it was my own stupidity, my naivete, to take this for real… according to him, normal pple wld hv known… he said i deceived him with my ‘act’ of normality… i guess he is right… but what choice do i hv?… shd i lay down in a heap of tears waiting for someone to save me?… of course i had to pretend to be strong… and so… is it now all my fault???…
he once said to me, i hv no ability to love in a way that makes the other person ‘feel’ it… and i dont kw how to give pple what they “want / need”…
my entire existence is a horror to him… i m a monster of confusing words, and just abt as beautiful or desirable as the swamp thing in his eyes… do i blame him?… no, i do not… i looked long and intently at the recent photos being bandied about all over facebook of his beloved skank, and i began to realise why she is more attractive to him than i ever was or ever cld be – she is NORMAL, not a fantasy, but common, cheap, easy, shallow… her art has no depth, no intensity of passion, just cute colourful pornographic images of flowers… yes, so what if she is crass, her bright red butt (with tag and very visible pantyline) stuck out for all the world to see, offering everyone the same view he has of her when he fucks her dog’s ass?… she looks very proud of herself in that pix and well she should be… cos say whatever i like, she’s a “damn good fuck” … and most importantly, SHE IS NOT A FREAK LIKE ME…
as for my dreams… it’s a pathetic laugh now, really…
he said he wants to help me… i m grateful, i truly am… but he doesnt understand, he cannot see, that in order to help me now, the only way is to love me… i dont need a ‘teacher’, i need to heal… just love me… with respect and dignity for who i am… give me a chance to be near him… to breathe again without fear.. inspire me with his own beauty, his art… and good vibrations… no, i dont want romance, it is too limited for me… and no, i dont really need mental resolution, IF i can know that i m loved… but this is impossible… becos i hv learnt that i cannot naively persist in trying to make him see… he will just think i m forcing myself on him… and that is so wrong of me to do… love has to be his choice too… not just mine…
u see, i m a freak… yep, a vegetable in the snow… a cabbage in the river… as ridiculous as it sounds, this is my existence… and in this great market of common carrots, broccoli, apples and oranges, there is just no place for snow vegetables and river cabbages…
Posted in dichotomy, fragility, friendship, hope, life & death, love, questions, relationships, senses, society | Tagged pain, child, fear, love, Asperger's, hurt, girl, folly, failure | 1 Comment »
terrible night – disturbed dreams and terrible pain along the entire right side… anyone who has or has had arthritis will understand the excruciating pain of this condition… this time, it is my right hip, knee, and ankle again… and probably a twisted ligament behind the right knee cos it hurts like hell as well…
ulcers in full force… that means more than 10 of those little spots of torture, with 2 on the tongue larger and deeper really bothering the shite outa me… needless to say with all this pain, my jaw is clenched even tighter and i hv to consciously unclench from time to time…
ears ringing – is it just tinnitus or from the pain?… i suspect both… and the ever present vertigo…
why has everything been so awful lately?… yes i kw, i kw, for the last 38 years since the age of 5 when i began showing signs of Behcet’s, pain has been a closer companion to me than anything or anyone else… and honestly speaking, i hv not ever had a completely pain free day in these 38 years… but i daresay i do remember responding better to painkillers during my 30s… perhaps my best years… and there were indeed some days that were better than others, fewer ulcers, no arthritis, better energy…
lately, things hv been very wearying… with flare ups coming at me back to back – sometimes one thing at a time, but other times, as today, both ulcers and arthritis hv decided to play havoc with me.
how long can i bear up?… there is my work waiting for me… but the depression has taken a heavy toll… crying incessantly… isolation… loneliness… yet i dont want anyone here with me, i cannot bear the idea of having my space being intruded upon by anyone… no there isnt anyone i can think of with whom i want to share my space right now in my agony… so i suffer this alone…
i read abt how pple with asperger’s need a caring network around them… i read abt the brave ones who hv made a success of their lives, i talk online to fellow aspies from a facebook group – a few of us hv become pretty good online friends… nobody has it easy… i kw… it is the human condition to suffer isnt it?… i kw i m not alone… but i still am… alone… ironic… ain’t it… that in my time of such need, i choose to be isolated from others, becos i m unable to bear their company… yet i yearn for a pair of loving arms just to silently hold me… and whisper to me that i am loved and treasured for who i am – this broken person who has so much to offer but no way to offer it… to myself or to others…
balancing on a thread… when will i fall off?… i want to fall… but i haven’t the courage nor folly to do it… so i keep on going… arms outstretched… my balancing act…
Posted in dichotomy, fatigue, fragility, journal, life & death, love, questions | Tagged Behcet's Syndrome, pain, vertigo, Asperger's, painkillers, arthritis, ulcers, isolation, suicide, loneliness | Leave a Comment »
pain is very severe… well it has been for way too long now… no respite… the flare ups come at me back to back… feeling so so tired from the pain… my knee is still stiff and swollen tho i cld walk without too much pain today… but the ulcers are now fierce and angry… eating during these times is a battle… thank god i am greedy i guess, or i’d hv just starved to death by now… clutching the spoon in hand and throwing my attention onto the tv screen to distract my mind from the searing pain, that is how i hv to eat…
i eat alone… i prefer to eat alone… i dont want anyone to see the agony of trying to open the jaw, stiff from TMJ, wide enough for the spoon to slip thru… wincing from the pain when food touches the ulcers… gripping fork and spoon so tight becos of the pain shooting thru my entire body… dramatic? yes every day is a silent scream for me… alone within these four walls… alone with my thoughts, my crazed mind, broken soul, torn body…
do i want company? hell no… the last thing i want is a visitor to try to ‘cheer’ me up… or someone nagging at me incessantly from their absolute ignorance, albeit well meaning, abt what food to eat, what remedy i ought to try…
it’s be 38 years and counting… when i was little, i had hopes that i wld grow out of this… but no… at the age of 43, i hv left that hope behind… and then what abt the asperger’s?… which came first? a chicken and egg conundrum… heaven’s joke, hell’s fury…
no problem with superficial socialising… but once i try to express something closer to my heart… wham! the doors slam and i m gabbing senselessly like a cicada… or, i just hv nothing to say… either way, blank incomprehension is the best i can hope for from my listener…
i hv caused too much misunderstanding trying to communicate with one i deeply love… perhaps someone shd hv taught this aspie child long ago – shut up and walk away, cos ppl just dont want to know… what makes me think anyone wishes to hear what i hv to say?…
suicidal thoughts follow me nowadays… actually it has been two years of incessant pain… and the view from the window is most inviting… i kw, i hv been in this state of major depression for so long… just treading water… but no – i hv neither the folly nor the courage to end my own life, though the idea is a haunting irrationality… and so i plod on… carrying these two burdens of inadequacy… and pretending to be strong… but why pretend?… becos i dont wish to hear anymore nagging condemning wearying advice abt what i m doing wrong for myself… as if i m to blame for my pain…
“u hv to learn 2 take care of urself”… a msg came late last nite to my mobile… my dear… what other choice do i hv?… nobody is here to care for me… not even to walk alongside me while i care for myself… definitely not u… so thanks for ur msg… but i dont kw what to say in reply… and so i didnt send any…
Posted in fatigue, fragility, journal, life & death | Tagged arthritis, Asperger's, autoimmune, Behcet's Syndrome, depression, pain, suicide, ulcers | Leave a Comment »
woke up earlier than usual, unable to sleep… a disturbed night with vivid confused dreams… jaw swelling subsided (sigh of relief), but vertigo still severe… and very very very tired…
fatigue is another horrible part of behcet’s… feels as if all energy has been sucked into a black hole… dragging my limp body around… managed to wash dishes, make my morning soy drink, write a few notes in my CBT journal, listen to the news… now gotta do some laundry… and hopefully get cracking with a bit of work…
work… how i wish i had the energy… i love my work… i m happiest when i m working… but my mind, emotions and body has been so ravaged by the past 2 years of constant relentless assaults that i feel an emptied wreck… but i want to get up and start living again… i m no longer young – i dont hv years ahead of me to waste… i hv wasted enough… i want to make use of the remaining to do what i love, what i m made to do, what resonates deeply inside of me, that which compels me…
keep going… keep going… keep going spunkykitty !!!
Posted in fatigue, fragility, hope, journal, life & death | Tagged Behcet's Syndrome, body, pain, mind, emotion, fatigue, tired, hope, cognitive behavioral therapy | Leave a Comment »
a crazy acronym day…
desperate to get out of spiraling depression and suicidal thinking, i headed for the psych yesterday… ok, so i m smart, i’ve read all the books, i kw it all… oh yeah?… well… yeah… but i still need someone impartial, someone not inside my mind and body, to talk to… so i talked… i told him abt my inability to cope despite being fully intellectually aware of my own situation… i kw all abt how to help myself, yet i cld not do it, and now i m desperate cos i really want to get on with my beloved work…
so… well, it’s time for a week of CBT – cognitive behavioral therapy… gotta do my ‘homework’ for one week and then check in again with the psych next week… ok ok i kw what to do… but i just HAD to pay to be told what i already knew… still, i m not ungrateful for help… i just feel silly… yet this has brought home to me a searing truth: nobody is an island, NOT even an aspie…
woke up this morning with excruciating TMJ – temporomandibular joint disorder – pain in my right side… and this is after i thought i was getting over the horrible pain from the left side and was beginning to be pretty happy… and now can i blame myself for being pessimistic?… the autoimmune cycles just dont seem to let up… it has been so long… and very very wearying… this alone is enough to bring me into depression… but i hv one more giant watermelon to juggle…
yep… ASD – autistic spectrum disorder, i.e. asperger’s… for 2 years i hv been hammering at one nail… trying to reach out to someone whom i deeply love but circumstances were such that made it impossible, and i had NO CLUE abt the impossibility of it all, so i kept going going going… and my vulnerability left me open to secondary abuse from a third party, the effects of which are now far more damaging than anything else… i wish i knew then what i know now…
a time to die and a time to live… i really hope this is my time at last to live…
gonna take a painkiller now… the pain is so bad, even the muscles around my right eye are throbbing crazily and i hv to squint…
hug me for a good day!!!
Posted in fatigue, fragility, journal, life & death | Tagged Behcet's Syndrome, pain, help, Asperger's, headache, depression, cognitive behavioral therapy, temporomandibular joint disorder | Leave a Comment »
pple can understand wheelchairs and cancer, but not many people understand fully what it means to suffer chronic physical pain… and how can they? this kind of suffering is invisible to the naked eye, intangible and silent…
but i kw… because i m blessed with this special uniqueness myself…
now there is a possibility of temporomandibular joint disorder … one more cookie for my cookie pot… i feel so defeated… it has been such a long arduous journey… one which i had once upon a time hoped would somehow improve… but i am aging, along with everyone else, and the added burdens are getting heavier and heavier, and so much harder to bear…
i live a largely reclusive life, i prefer to be alone in my pain, from childhood i would refuse any help even when i had my face stuck into the toilet bowl, throwing up my guts and screaming in pain… i would close the bathroom door… and i kw, it caused mom a lot of grief standing outside feeling helpless and rejected… of course now i kw that this odd behavior stems from asperger’s, but at that time, nobody knew, and i can now empathise with mom’s frustration, raising a kid like me…
i hv been spunky brave, hiding my own fragility, because i did not want to be a burden to anyone, nor did i want to be treated like a freak… as far as physical illness was concerned, i have not known a pain free day in my living memory… behcet’s is not always life-threatening, but in whatever form it takes, it is excruciatingly painful…
and now, TMJ…
i am not surprised… it is a form of arthritic manifestation… all my other joints hv been subjected to the ravages of arthritis, i guess it was a matter of time the jaw joined the decorated ranks… and along with this, fear… fear of starting yet another painful round of tests… and just plain fear…
last night, i had dinner with a professor and we talked abt my academic path and future plans… it was an ironic dichotomy of joy and pain… joy because opportunities are finally opening up to me… a new beginning beckons… yet pain, because i know i am deteriorating… mentally and emotionally devastated, and physically broken… and old… i no longer hv inside me the stubborn brave determination to drive myself over the limits and keep going… the tiredness is overwhelming… and for once in my life, i admit and desire HELP… but too little too late – i dont kw how to ask for it, and i dont kw what to ask for…
running on broken… but i will keep running… i just wish i had learned the skill of asking for help…
Posted in dichotomy, fatigue, fragility, questions | Tagged Behcet's Syndrome, pain, help, tired, autoimmune, TMJ, temporomandibular joint disorder | Leave a Comment »
unintended injury – careless words in an aspergian’s ear
intentional mental and emotional torture is a poison that finds its way deep into anyone’s psyche, but for aspergians, because of our inability to process such trauma as adeptly as neuro-typicals, the effects are far more severe and longlasting…
but unintentional careless words can hurt too, though not as deeply, nor longlasting… especially if i know and understands cognitively that it was not meant and it was just part of a process of getting to know each other’s differences and learning to work around them…
i hv been hurt many times by people’s insensitive comments abt asperger’s and autoimmunity… partly because i hv managed to ‘normalise’ myself so well that the revelation of my handicaps become a shock to those who thought they ‘knew’ me, and their own ignorance of such conditions… however, the unpleasantness of both the cause of the injury and the effects are usually shortlived, compared to that of repeated intentional abuse…
recently, a friend who has been very good to me, made remarks that hurt and angered me… he said he didnt believe in psychological handicaps, that these are just figments of over-indulged rich people’s imaginations… and he equally didnt believe in autoimmune disorders, he said they are just “psychosomatic nonsense”…
i was very very upset… but i cld defend myself and draw a clear boundary, becos i identified the nature of this kind of ‘attack’ and was well-trained from years of experience in how to respond… i told him that i valued his friendship, but although he was entitled to his views, these views offended me and he should never mention them to me again… yes, i was still shaking from the experience, both from the careless words and also from having to confront and draw the line… i mused and agonised over this for a few days after that, but it did leave lasting scars in my mind… because i m equipped now to process such experiences…
these comments are not new to me… they hv been thrown at me by strangers, friends and even my own mother… and yes, i hv in some way suffered the effects of such ignorant prejudices… but for me, the intent has always mattered more than the content… and as long as i can see (from their actions towards me) that they do not mean me harm and instead they care for me in their own limited ways, i can process these injuries easily after a short period of relatively shallow emotional upheaval…
i guess it all boils down to intent and duration of injury – and how an extreme mind processes the differences… and the learned skill to handle and process the different kinds of injuries…
sticks and stones may break my bones, but words can devastate my soul…
Posted in fragility, questions, relationships, society | Tagged Asperger's, careless, words, hurt, autoimmune | 2 Comments »
lost…
there’s this silly girl… trying to find her way thru a dense forest without a map… without skills to navigate or discern the confusing laws of nature around… who to trust, who not to trust? when to trust and when not to trust? what animals are poisonous and which are friendly? how to tell the difference? if poisonous, how so and what must she do? if friendly, how friendly and in what ways?…
a child defenseless lost… locked hopelessly inside an aging sick woman’s body… unable to cry for help… dont even kw what to ask for…
and dare not ask…
Posted in fragility, general, questions, relationships, society | Tagged Asperger's, help, lost, relating, Theory of Mind | Leave a Comment »
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