Save A Spoon

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.

I’m home, safe.  Thank you everyone for all the support.  I got home tired but maybe ok.  And a numb, winded feeling like I just got off a rollercoaster and am adjusting from that height of experience and emotion.  Except the "plain old" real world was the rollercoaster.  I’m going to take it easy for the next week or so (yeah right) and hopefully be ok as I let go of all that freedom and beauty and come back to my walled prison (full of joys). #MECFS #LongCovid

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

Having this kind of day?! #spoonie #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: 988lifeline.org #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!

Manager finally emails me 6pm on Friday. Says a doctor whose interest is dermatology at the other (not wheelchair accessible) location is willing to meet + consider MAYBE taking me on on a trial basis. Srsly? The level of disdain is so wild I don’t want to go there now.

@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

A lot of people left but who are your favorite chronic illness/disability accounts that are still here?

#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

Realities of a Doctors’s Appointment! …

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

If this is how your day goes, you are not alone. #spoonie #ChronicPain

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

The Best #spoonie Halloween costume they made!

#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.

Things you can do to support a chronically ill/disabled loved one if you feel so inclined: ✨Pick up their medication (with permission of course) ✨Do a chore ✨ Research their illness ✨ Call/text to check up on them ✨ Bring them a meal or a coffee Anything you would add?

@DiaryofaSickGrl @tjozwickautism I have people pick up my meds, I think it depends on the place, meds, etc.

@tjozwickautism I didn’t say that they could do it with permission. I said if they can’t, there are other ways to support someone.

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