What is the best support that I could offer someone with Fibromyalgia?
Honestly just understanding, no suck it up, it can’t be that bad, get out and do something, it’s an illness that we never know how bad we’re gonna be so plans are pointless, invite but don’t get upset if they bail, etc, when we do get good days you can guarantee we will do all we can then have a crash for 2 weeks as did way too much, a job looks simple to you not so much to us.
I get bad paraesthesia just typing imagine having to scrub the shower I look and know in 1/2 minutes I’m going to have crippled hands so why bother to start, or we can start a job then gets too hard so we move on to another simple thing and repeat till everything is a bit done, etc, most people with fibro are just angered by assumptions like we love being “lazy”.
We enjoy bailing on plans or eating toast as haven’t the energy to go shop or even not eating as can’t even manage that, seriously I have eaten one mouthful, and like nope I can’t even lift a spoon or have the energy to chew my food, we’re tired all the time except for like 2 hours when it’s midnight, oh then is 50/50 if we can sleep and even if we do sleep we do not hit deep sleep so always tired which causes more pain.
Which causes worse sleep issues which causes more pain…. round and round it goes, so we have to have an order I need to do x.y z they are a must so we do those and anything else is a bonus, look up “spoon theory” this may give you more of an idea, or for example, let’s say you have a phone the charging is unpredictable you plugin for the night and is a surprise what % you may get so you wake up.
It’s at 50% everyone else is 100% I have the same things to do as you but on 50% battery so have to optimize, leave out some things that take me down to 0 plug phone in the next day because I had to squish stuff in and that messed up my “battery” more today I have 40%, 3 days later I’m only getting to 5% so I need to do nothing to try let battery recover to a better amount.
Also as my battery is “weak” what takes your battery 1% to do takes mine 4%, so for you having a shower jump in scrub feel refreshed, etc, for me a shower actually takes energy away from me, a walk to the corner shop for you nothing for me like walking the marathon with a limp, we also are VERY good at faking being fine, as we can’t just lie on floor screaming due to the pain all day.
Just picking up a cup can make it feel like a bone has broken in my hand but I can’t scream every time, we can “continue” with pain most people rush to er for, but in the confines of our homes we’re in pajamas easy clothes, pottering when we can resting and chomping meds that don’t help much, so basically anyone you know with FMS feels shit enough as is w/o people who cannot know what it is actually like judging.
“Just exercise” “you need change diet” ya de ya trigger phrases do NOT use them, and in my experience most of US with FMS just want people to grasp what we are dealing with and not brush it off, believe me, most of us at Doctors begging for any fucking help so we’re not this pointless waste of flesh but there’s not even a definitive way to diagnose it let alone treat it.
I am using FMS as fibromyalgia syndrome as it is NOT one problem it is up to 200 symptoms so do you think we’re having fun? headaches lasting weeks? bruising easily, IBS, brain fog, short term memory fucked to shit, I’m at can forget what doing while I am doing it, paresthesia, vertigo, dizziness, eye muscle weakness, just to list a few symptoms bar the “pain”
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