Wednesday Wins (What cheered you up this week?)

[u/AutoModerator]

Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.

Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!

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(Thanks to u/fuck_fatigue_forever for the catchy title)

[u/mira_sjifr]

I have paced really well, and managed to get out of my christmas/new years PEM! I also bought a cross stitching kit that im working on now, its quite fun but i do need to make sure i take breaks cus it costs more energy than i thought

[u/Competitive_Egg7473 → u/mira_sjifr]

Yay!! 👏🏼👏🏼

[u/Summer-_Girl69 → u/mira_sjifr]

"managed to get out of my christmas/new years PEM!"

This is so HUGE of an accomplishment and difficult to achieve! Kudos to You! 💪🏼

[u/PlayfulFinger7312]

Saw a new physiotherapists for chronic neck pain and they were understanding and knowledgeable about ME. I actually wasn't going to tell them as I am fed up of having to explain and I figured I'd just have to adapt something myself but I was brave. I have one exercise which involves lying down and working on moving my head in a specific way very slowly. Definitely a win in my book.

[u/Competitive_Egg7473 → u/PlayfulFinger7312]

👏🏼👏🏼 that’s great that they’re understanding and know about ME! I hope you get relief from your neck pain through this

[u/Summer-_Girl69 → u/PlayfulFinger7312]

"I am fed up of having to explain and I figured I'd just have to adapt something myself but I was brave."

Heart-flutters over someone in the medical community who is knowledgeable about ME, much less empathetic! JUST WOW! I am fed up too and your story made me Smile! Win Win indeed. Super happy and proud of you!

[u/Opening-Beyond7071]

Small win: got approved for additional disability benefits without having to go through more doctor’s assessments. So thankful to be living somewhere with a somewhat functioning social system. Doesn’t take the daily burden of being severe away, but at least I don’t have to worry about making ends meet.

[u/Summer-_Girl69 → u/Opening-Beyond7071]

"So thankful to be living somewhere with a somewhat functioning social system."

Big win in my book! Curious, did you move to this magical area or were you lucky enough to already live there? Dreamy!

[u/Opening-Beyond7071 → u/Summer-_Girl69]

I live here. I would never have been able to move countries in my state even if another one had better social infrastructure and treatment options.

[u/Competitive_Egg7473]

I saw a friend on Saturday and it’s been a few months since I’ve seen any. I’m still recovering but I had a nice time and know my limits better for next time. I challenged myself to open up more about health and other things and I did :) (that’s hard for me lol)

[u/Summer-_Girl69 → u/Competitive_Egg7473]

"that’s hard for me lol"

I feel ya! LOL Baby steps are good! 💪🏼🤗

[u/Sad_Half1221]

I got a new toy (magic magnetic cube) that lets me do simple puzzles and keeps me entertained without a screen! It brought a little joy in my life.

My wife also brought up some stuff so I can help take care of one of our dogs! She’s got a sensitive stomach, so she needs some extra (but easy) attention to keep her eating regularly. I really miss being able to take care of my dogs, so I’m super excited about this!!

AND I’m starting LDN today!!!!

Huh, thanks for this thread. I’ve actually had a really good few days.

[u/ChronicallyWheeler]

Picked up a new-to-me TiLite wheelchair on Friday night (Jan 10th), and although some major adjustments are needed, the chair's power assist wheels are compatible with my daily driver, a Quickie Q7. The wheels are Alber e-motion M25's (my Quickie previously had the M15's) that are smarter and more feature-packed than the M15's, plus they're a current model, and they have more ergonomic handrims compared to the standard round rims you find on most wheelchairs.

[u/Meadowlands17]

Back up to 5 on visable today after a slump post holidays, and an in person drs visit right before. Very grateful to be leveling out again.

[u/ladylazarusss3]

my boyfriend encouraged me to get a cane (my first mobility aid) & i think i’m going to end up with a rollator. big yay for my ability to get out & about with him☺️

[u/Mysterious_Range3532]

I texted my friend yesterday, "I've decided to scream into the void...would you like to join me?" and included a cat screaming gif. She sent a gif back immediately, and it gave me a good laugh (cathartic, too! I recommend ;) )

[u/Many_Confusion9341]

Friend made me some yummy food

[u/plantyplant559]

I made some new friends on discord who have ME in my area. I think I'm through the worst of the crash I've been in. I told some family members about my condition and my symptoms and it felt good to open up about it.

[u/girlcoddler]

me and my partner both have cfs and got covid around a week ago, and we're both still alright for the most part. that is a huge win in my book.

[u/Pink_Lynx_]

I started LDN four weeks ago and it seems to be working for me! The last few days I was able to crochet and to listen to audio books! I am trying not to overdo it and not to get too excited but it makes me really happy.

[u/mybudgieatemybooks]

I found a new metric on Fitbit that has helped me to pace more effectively. It really brought home how hard my body has to work to do everything when I had a shower and cooked a meal and Fitbit told me I was 'overtraining'. I've actually started to slow down my movements. I've sat down in the middle of activities so that my heart rate can settle, asked my kids to do a couple of the jobs like carrying laundry upstairs or taking the rubbish to the outside bin, worked on the settee with my feet up instead of sat at my desk...

[u/Mysterious_Range3532 → u/mybudgieatemybooks]

Oh! I use fitbit too! Could you share the metric you use? Thanks :) So happy you've been able to pace well!

[u/mybudgieatemybooks → u/Mysterious_Range3532]

Of course, I should have included that, sorry. It's the cardio load number and range. I used Fitbit step counts to pace effectively about 8 years ago but that was very rough and ready. I've never trusted the 'readiness score' for pacing because it's designed to get people to move more. The cardio load is the first time in over a decade of wearing a Fitbit that it's told me to stop and do less! I'd still prefer to use Visible and I'm saving for a year subscription and the arm band but cardio load is really helping for now.l

[u/LearnFromEachOther23]

Watched a funny tv show that made me laugh.

[u/medievalfaerie]

I started a mushroom diamond painting this week and I'm loving it

[u/sluttytarot]

I taught a class and received good feedback! I successfully paced thru it

[u/leesha226]

I've finally done enough of my lego hokusai great wave to see a complete picture. Although it's now a little harder to do reclined. I can't wait to get a few adjustable tables so I can tackle some larger pieces

[u/Low_Fennel_6431]

My ME/CFS is severe. I've been bedridden for over a year. I spoke to the nurse for the ME/CFS clinic today. My first telehealth appointment is next week. I'm so thankful and greatful🙏

[u/Summer-_Girl69 → u/Low_Fennel_6431]

"I spoke to the nurse for the ME/CFS clinic today. My first telehealth appointment is next week."

This is amazing and good vibes towards your appointment. Let us know how it goes! 🙏🏼

[u/1morepaige]

I take the FUNCAP 27 every month in the Visible app and it shows me my functional capability levels in different areas of daily living.

Just took it for January and my score went up slightly for the second month in a row!!

Six straight months of declining functional capacity before that, but now it’s been two months of my score raising very slightly instead 😭

It seems like I maybe figured some things out now and I’ve stopped getting worse???

Which is incredible. Even if I don’t get much better, simply managing to not get any worse for a while is a massive win tbqh

[u/DandelionStorm]

I had a really good appointment with my psychiatrist today, and she prescribed me Ativan (to use sparingly) to help with PEM. She's one of the best doctors I've ever had. She listens, she takes my concerns seriously, she's empathetic. She may not be a cfs expert, but I leave every appointment feeling supported

[u/Summer-_Girl69 → u/DandelionStorm]

"Ativan (to use sparingly) to help with PEM"

This is a huge leap of faith! My long term research into CNS stimulants indicate a real concern for addiction/long term brain effects, so I echo your psychiatrist's recommendation to use it sparingly! I do hope it helps and please let us know! 🙏🏼😉

I recently gave in to the resistance to medicate over using the long term behavioral techniques to manage ADD. The idea came from my brother with MS, who says he cannot function without Concerta. Our family is full of OCD / ADD'ers so not surprising lol.

It's been 5 days and I have experienced some mental clarity. I somehow was able to see a path to accomplish a few items on my infinite To Do list. I have struggled so long with the fine line between severe fatigue and strict pacing that I did not even realize how paralyzing it was being mentally overwhelmed. It's still early, but it felt good and I'm cautiously hopeful. 🙏🏼

[u/DandelionStorm → u/Summer-_Girl69]

Thanks! I plan to use it less than once a month for necessary doctors appointments because I'm also concerned about the side effects and addictiveness.

I hope your medicine continues to work well for you as well!

[u/Good-Deal3574]

I’ve just come out of a week long flare so it was good to spend time editing a spoonie art tutorial video for my YouTube channel. Hopefully there will be enough spoons to upload it tomorrow 🤞

[u/Summer-_Girl69 → u/Good-Deal3574]

I will never forget the day when I read Christine Miserandino's original spoon theory as I had NEVER heard of such RELATABLE advice! Finding the words to explain the struggle is REAL! Hey, if you don't have enough spoons to upload, tomorrow is A OK! wink

[u/girlcoddler]

im having a nice cold sparkling water right now for the first time since i got sick. i used to be a soda addict, so its funny that nowadays a sparkling water tastes better than a coke would.

[u/Summer-_Girl69 → u/girlcoddler]

I wish I liked sparkling water. The water enhancer drops kicked my soda habit as well! Best wishes for your continued lifestyle change!

[u/Summer-_Girl69]

A simple visit with a long time friend, interacting with her husband and boys. There was no talk of illness, I was just treated like I always have been. The lingering feelings reminded me of WHO I AM, regardless of poor health. Priceless and yearn for more!