Hollie

RE: https://kolektiva.social/@aredridel/116552279213533823

This is helpful, I’ll be telling my doc about it.

By this metric I’m at a 7 about 90% of the time (an 8 the rest of the tine). A really good day is a 6. I haven’t been at a 4 since 2015 or so. My last time at a 0 was 2007.

#Fibromyalgia #MECFS

May 11 at 6:46amWeb
Show threadHollieKMay 11
@hollie It is incredibly useful. Not only does it give me a scale for any pain I have at any time, it gives me some small understanding of what your pain is like.
Show threadHollie6d ago
@HollieK72 Funny enough, it's giving ME a better idea of my pain? I posted that last night and all morning I've been thinking about it. I don't think I've realized how my expectations of what I should be able to do don't match what I'm dealing with.
Show threadHollieK6d ago

@hollie

There's quite a difference between avoid usual activities and prevents doing daily activities, as far as what you can actually do.

My husband commented that he's between 2 and 4 most of the time, which was news to me, and now I feel guilty about not realising.

Show threadHollie6d ago
@HollieK72 It really makes you realize how invisible pain can be!
Show threadHollieK6d ago
@hollie And how much people get told things like you can just push through it, as though the pain isn't really that bad.
Show threadAsta 📚🧶🪡May 11
@hollie This is in use in Finnish healthcare! It's handy.
Show threadAsta 📚🧶🪡May 11
@hollie Actually on a proper read this is more descriptive than the one I've seen here, but close.
Show threadHollie6d ago
@asta I already like Finnish healthcare better than ours. :)
Show threadAsta 📚🧶🪡6d ago
@hollie It's great! Sadly the politicians are actively messing it up. 😔
Show threadHollie6d ago
@asta Sounds like politicians. :/
Show threadGullekoMay 11
@hollie  
My good days are a 4, my bad days are an 8... IBS episodes are a 9. 🙃
Show threadHollie6d ago
@Gulleko Ugh IBS, it's so frustrating. I'm sorry!
Show threadGulleko6d ago
@hollie At least my "poopisodes" are fairly rare, like once per month at most.
Show threadKimberly HirshMay 11
@hollie Well now I feel lucky that I tend to hang out in the 2-5 range.
Show thread🍋 Superball ☀️May 11

@hollie

That is really high! 😧

Show threadIrina6d ago
@hollie 3 when sitting down, 4-5 when cycling, 6-7 when standing up or walking. (Most of it is the stiffness rather than the pain.)