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a body that disagrees

June 6, 2014

i’m a little tired.

the hexagonal sulindacs i was taking helped with my flares. but constitutional symptoms like fatigue don’t go away. the flares are still there of course. the fatigue is an anchor like i said.

my gastrointestinal tract isn’t working the way it should as i’ve been saying. what goes in takes an unusually long time to transit. i saw a gastroenterologist on a whim on Wednesday because it was getting very bad. i suspected delayed gastric emptying. i did a barium meal follow-through yesterday. but the results showed nothing structurally abnormal. i don’t know what’s happening. i’ll see him next week.

i can’t see my treatment for at least 3 months i think, because of my new work hours. i went back to my good ol’ doctor who privatised at the end of 2013 because his clinic is more flexible compared to hospitals. not getting the therapy i need to sustain me, so i have to “work harder” to keep going for now.

my effort intolerance is getting worse i think. i don’t like this feeling. we always thought i was deconditioned from prolonged hospitalisations. i have tried exercising. but things are never the same as they used to be anymore. how can the change be so drastic? it is puzzling. it’s so bad that i can’t file case notes without getting breathless (because the files are stored by index in rows in the cupboards, and it can be difficult to pull apart files to retrieve or insert files). such exertion can cause breathlessness?

ok maybe “a little tired” is a gross understatement.
i don’t know what to do with a body that disagrees with me at this age.

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2 Responses to “a body that disagrees”

  1. jmlol Says:

    Don’t give up. Keep being your own advocate; this fatigue sounds real to me. Have they checked for mono, lyme, and thyroid?


    • Hello! Yes the fatigue is maddening. I always attribute it to my RA and probably from my insomnia. Like you said, it could be those. Thyroid is definitely out because they’ve been normal. I check them yearly. Where i’m from, Lyme’s and mono is very rare, although not impossible to get. I don’t like to give up, but it gets very mentally exhausting always trying to get to the root of something and not finding anything. I have learnt that for myself it will take many many years, so sometimes i just let it her. Not very wise for a person who is a patient advocate. Haha. But nevertheless, thanks for writing!!! Made me smile :)


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