No PEM challenge when severe
TLDR; Severe and still getting worse. PEM once or twice a week. Going to restrict all activities that have a chance of causing PEM for the next month or two to try to halt the deterioration.
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Hi all my fellow sufferers. I have been sick for about two years now and have continued to deteriorate, going from mild to moderate between June and Dec 2024, and from moderate to severe between Dec 2024 and Jan 2026. Both jumps in severity level coincided with a re-infection, but in between I've also slowly kept getting worse. I'm currently in bed 23.7 hours a day. I have had PEM probably once or twice a week for my whole illness duration. Initially the worst symptoms only lasted about a day, but lately it's been more like 3-4 days. During PEM I'm mostly paralyzed, cannot handle any physical or social activity, and need help getting wheeled to the bathroom. When the muscle weakness lifts, some activities that used to be safe, aren't anymore, and that's why PEM is so so difficult for me to avoid. I now feel myself slipping towards very severe and need to try something drastic before I cannot speak/eat/use the toilet without crashing.
My triggers are mostly physical and social activities and bright lights. Luckily I'm less affected by solo cognitive activities or sound. I made a list of all activities that I have been doing the last two months and divided them into categories based on how 'safe' they feel.
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Always safe:
- Sleep
- Drinking while laying down
- Daydreaming with eyes closed (eye mask helps to concentrate)
- Meditation
Safe - outside of the worst PEM:
- Eating while laying down
- Listening to a (0.75x-0.85x speed) audiobook or other scripted narration with eyes closed
- Reading fiction on my e-reader (on extra dim screen)
- Talking to my husband and cuddling
Semi-safe - only in moderation while feeling better:
- Getting my face + armpits washed with wet wipes
- Trimming my fingernails myself
- Changing clothes
- Brushing teeth
- Using a bidet on the toilet
- Walking to-from bathroom (10 steps)
- Grabbing food from the kitchenette in the next room (only after being awake 2-4 hours)
- Eating while sitting up in bed
- Ordering groceries
- Mobile puzzle/colouring games / Reddit (on extra dim screen without sound)
- Watching a short video without sound
- Reading/writing text messages / e-mails
- Having a dim light on
Unsure if semi-safe or unsafe - use extreme caution:
- Increasing LDN dose
- Briefly looking out the window with sunglasses on
- Listening to audiobooks with a dynamic voice / other unscripted narration
- Listening to videos
- Listening to music
- Watching a short video with sound
Unsafe - only when no alternative:
- Washing my own face and armpits with wet wipes
- Getting my whole body washed with wet wipes at the same time
- Getting my hair washed
- Trimming my own toenails
- Footbath
- Flossing teeth
- Having (masked) visitors for 5-10 mins
- 5-10 min phonecalls
- Walking to the next room and back multiple times
- Using my laptop
- Watching a 3+ min video with sound
- Having a bright light on
- Minor food prep
- Weekly medication prep
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I really hope I can halt the deterioration by avoiding all unsafe activities and limiting semi-safe activities. I already know I will unfortunately have to break my own rules in three weeks time, for an hour-long disability assessment for financial aid. At least it's online and my husband can attend. Maybe the subsequent crash will be less bad if I have no PEM between now and then?
I will re-assess in 1-2 months and think about whether or not to expand the safe activities list and if so, how.
Please share any tips, words of encouragement, or your own experiences trying a similar challenge. Thank you!
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EDIT: Of course this list is very individual and by no means am I advising other (severe) folks to use the exact same list.
EDIT 2: Anyone who wants to do a similar challenge, let's do it together! DM me your list! :)