Do you use a heart rate monitor (HRM) to keep within your (often surprisingly low) energy limit: what you can “do” w/o major impact to your health? (An Alarm can go off) I Used 1 yrs ago-so helpful! I’m Trying it again. Just need a good watch, no body band. Suggestions? #spoonie
@DafoeWhitney The outside world is an emotional rollercoaster. The highs of being part of the real world, seeing what a “normal” life is. Then the reality of coming back home where sure, there can be joy, but the isolation can be tough. Take your time to heal.
Seizures were amongst the first symptoms reported in #MECFS cases yet now Drs act like you are nuts if you develop them since they often present as A-Typical. If YOU know something is wrong, you are right. Don’t be pushed around, help is out there #chronicillness
#Chronicillness is lonely, it can lead to suicidal thoughts we are afraid to tell. The #Suicide Lifeline is always there. Call or now text!
(More helplines coming)
Please Call or text #988 - 24/7 -don’t suffer! Online: https://t.co/FDSMvy4Owa #spoonie#pain#help
@arianek Please don’t feel stupid! We have all gone to extreme lengths to get help, it makes you a fighter, or dumb. There might be an automatic legal form you could find online & send them if you want that step but real legal battles are $$$, I learned the hard way. Good luck!
@DiaryofaSickGrl I follow you!
I’m @spoonie_life if anyone wants to be friends. I became bedridden at 10, ( my whole life). I try to give any tips or support to our amazing community. I’ve been MIA (caught Long COVID) but I’m returning :) #spoonie
#Spoonie Home Hack: Have problems w mold & mildew?
When you buy a new shower curtain, wash it with salt, it will keep it mold free! #chronicillness#ChronicPain
SECRET SUPPORT: It’s shocking patients w the ravages of
#ChronicIllness#SevereME
often deal w/ it in silence for fear getting help might be labeled “crazy”. If you need some support, PLEASE: TEXT - or CALL 988 for immediate private suicide crisis support
#SpoonieSymptoms I have battled #nausea for yrs, this is the first OTC product that actually helps me. (There is no link,to help prove I’m NOT selling them). I just want to help others. #pain
Plz make sure these are ok for *you to take #chronicillness
Keeping track of medical information is tough when you have a cold, bug, etc What ABX did I take? When? How long? I never write it down, I’m miserable. Now I keep a tiny notebook in w my meds: I gently tear label off ABX bottle, etc & tape it in notebook #ChronicIllness#Spoonie
#spoonie Game Changer! Life comes w a lot of cords! Now imagine you have piles of medical devices too. Keeping track is confusing. 1) Put a label / tape on it. 2) Take white-out or nail polish, mark the *top of the cord, you will always know how it goes in! So Worth it!
@DiaryofaSickGrl BRILLIANT question. The best thing anyone ever did for me was ASK how they could help me. I was so shocked, I didn't know what to say. They stayed w me during a scary bad day & did all my laundry while I slept... I wasn't alone. JUST KEEP BEING THERE.
Pt 1/1: Too sick to get to the dentist/ brush your teeth? "Oil Pulling" is an all natural TX that dates back thousands of yrs. It fights; cavities, tarter, bad breath, gum disease &swelling. Best of all it detoxifies the lymph & blood system! When you *first wake up... #spoonie
Pt 2/2 - take 1 TBS of Coconut Oil (liquid is easier) & swish 5-20min. They suggest 20, but start w 5 & go slow. You may have some dry mouth, thirst, etc. at first. *Ask your Dr if this is okay for you. **Spit oil in trash! Don't clog your drain!** #spoonie#spoonieTip