the unknown

it’s been 3 days in the hospital, and all i keep hearing is “it’s normal”.

but no, it’s not normal. it isn’t normal to wake up with a left leg numb up to the mid-thigh, experiencing weakness and parasthesia at the same time. it’s not normal this is the 2nd time it has happened in 3 months. and it’s not  normal for it to happen to the right leg twice in public, which saw me sprawled on the ground, and then also missing my bus stop. these 2, just because my right leg took a 15 minute nap.

it is not acceptable to me that it is all “normal”

the numbing/weakening of my lower limbs cannot be explained. the neurology team has done all they can- MRI Brain and Spine, Electromyogram, Nerve Conduction Study, Somatosensory Evoked Potential- all turned out normal. bloods too.

i must be mad to think that i want something to be abnormal. but i’m not.

i’d rather contend with a diagnosis (from an abnormality from any of the tests), than go around not knowing what is going on. the  uncertainty and fear that comes with it makes me anxious. and even though my left leg is the one that has “flared up” and has seen me needing to use my crutch, my right leg has very briefly done so too.

what happens if it occurs again? what if one day, both my legs are numb?  what if the numbness takes longer than usual to return to normalcy? there are so many ‘what-ifs’ without a diagnosis and treatment.
i’m not crazy. i have chronic illnesses. i know what it feels like to not get answers, to be absolutely helpless, to settle despite the distress, and to live on with ambiguity and doubts. it reminds me of my 17 year journey to be diagnosed with JIA and then RA. it was 17 years of pain that i suffered. it was during a decade in this period that i have been accused of malingering and lying, exaggeration and have been brushed off by doctors. and the strangest part of this arduous journey was that what i went through was blatantly a form of arthritis.

so i have to admit that i am scared. i don’t want it to happen again, ever. but that is stating the impossible. i want to know how to fight it and prevent it. i don’t want to be taking Neurobion (supplement for the brain) and hoping it’ll help, because it won’t.

i might have been stressed up by this entire event, or even the whole of the past week. my chronically inflamed shoulders flared up. the neurology doctors were reluctant to add the amount of analgesia that was in the plan with my anaesthetist. as if i wasn’t already worrying about my leg, the pain in my shoulders and lumbar back added on to the burden. i was so desperate i had to email my anaesthetist near midnight so that the pain team can step in to help. they came, they legitimately listened to me, and changed the regime to help my pain management. and because of the flares, they brought rheumatology in as well. i was seen by another rheumatologist, and he was that “if i don’t see it, it’s not there” kind of rheumatologist. it made me angrier. because my rheumy who has seen me for almost 10 years would know how to handle my flares.

can you see what’s going on that’s makes me angry? it’s difficult to understand where i come from. but it’s better to fight a war in broad daylight, then grope around in the dark, not knowing what’s going on and when i will be tripped over.

this i can say, is a huge trigger for me. it’s as if i don’t already have a plate full of illnesses. i am sad, angry, frustrated and bitter altogether.

can you really blame me for that?


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