When the science finally catches up to what people are saying.

I got some full leg compression stockings and while they feel GREAT they increase muscle spasms. Anyone else experience this?

I really want a senior dog who can just lay around with me. My poor spouse is treading water handling EVERYthing since I got sick so I know he can’t handle one more responsibility… but I really want a dog!

Let me tell you celebrity jeopardy, regular jeopardy and pop culture jeopardy all happening at the same time right now means our household is a jeopardy happy place! @kenjennings.bsky.social

Sometimes cetirizine hits me like a ton of bricks and makes me very tired. When I get very tired I often get sad. I started crying and told my spouse, “I’m just sad.” That sweet man comes over and rubs my legs and says, “You be sad and I’ll be right here.” 💜💜💜

Two characters I understand a bit more since getting sick: Doc Holliday from Tombstone and Beth from Little Women

Allergies and #mcas are bad. Woke up at 4 am completely snotty and eyes crusty and watery and a bug bite very itchy. Took another cetirizine and flonase. Also noticed lots of hair loss yesterday. Allergies in the bay are no joke 🤧

Sunrise, Sunday 17 May, from Okitu Beach, Aotearoa / New Zealand. Ata mārie / Good Morning ☀️

Effort preference is the biggest bunch of bullshit because, though my legs have hurt for the last four years, when I wake up every morning and they feel better my brain goes, “They’ve healed!”. After about 2 minutes of standing and the pain comes rushing back I’m reminded they are very much not.

I think my favorite thing (/s) about #mcas is sometimes when I feel better I try and eat something non low histamine and it’s fine and sometimes my body is just like, “the fu*k you will.”

My family is going to Disneyland soon and I am so sad I won’t be there. We grew up going A LOT since we lived so close. High school weekend & evenings, Monday family dinners, memories of my parents swing dancing at carnation plaza, sis worked there in college. It was our families place.

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

Striped cuckoo (Tapera naevia) chicks utilize specialized, cryptic plumage that mimics the texture and color of pinecones for camouflage. #birds

Having severe mobility limitations and in frequent pain videos like this into the outside world, especially of a place I already know and love, is a lifeline for people like me. I can close my eyes and remember the smells of some of my fav NZ beaches.

Day 2 after IV iron infusion (2mg only!!) and I now only consist of flatulence, anxiety and depression. This is not an uncommon #mcas flare trio so I can recognize it. Trying to be buddhist about the whole thing; observing my thoughts come and go.

My sister and nephew sing a lullaby to the fireflies outside before he goes to bed. They’ve started FaceTiming me while they do so it so I can watch the fireflies and listen to them sing. It is the most perfect thing in the entire world.

THIS IS THE RESEARCH I WANT TO SEE. #triplethenihbudget

Picking up anything remotely heavy, and I’m talking heavy for #mecfs which for me can be like, a mug, has started to make my wrist sublax. My shoulder also now sublaxes in the shower if the water is hot. #mecfs and #longcovid literally are making my body fall apart.

Long Covid has become one of the most common chronic diseases, as common or more common of conditions "such as ischaemic heart disease, gout, chronic obstructive pulmonary disease, and rheumatoid arthritis." Yet it remains poorly addressed and treated #LongCovid newsroom.co.nz/2026/05/14/t...

Leipzig researchers followed 262 adults nearly 9 months after COVID and found lasting signs of blood vessel damage and altered metabolism. People with severe fatigue also showed higher fatty acids linked to inflammation. www.nature.com/articles/s41...

Another cloudy start to the day, FRIDAY, 15 May. A small little point of orange light marks the start of a new day. Ata mārie / Good Morning ☀️

IV iron infusion chest pain finally settling a bit today. However, anxiety is like at 1000. Which I now know means my #mcas is flaring. It just likes to make its way through different parts of my body 😆

File under Surprise ME Not Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study #ME/CFS #pwME

I am SO happy I found @gurdeep.ca on Bluesky. His videos made me happy on twitter years ago. This made my day. Seeing joyful movement is one of my all time favorite things.

I need my power chair to just get here already. I have about five minutes standing before the pain and cramping becomes excruciating. I just paid out of pocket for one bc we needed something lightweight, foldable and small enough to fit in our house. Trying the OAS mobility air ultra.

Just to be clear, #MECFS isn’t some rare disease that will probably never impact you or anyone you know. Around 1% of the population is affected. Maybe more! Definitely more if you’re only looking at women!

Feel like hot dog doo. Is it from infusion itself? Exertion from infusion? The bug my spouse has? Who knows 🤷‍♀️

I tried using a kind KN95 mask and they do not fit my face at all. I haven’t had this issue with any other mask I tried. The loops were too long and the mask itself too small. Seems almost mis-made. Anyone else had this issue?

Iron infusion first trial round with a microdose. Took 5 sticks. After 4th nurse goes, “She has #pots and has been upright there’s no blood in her arms.” So I finally go into private room and put legs up the wall and they got it. I’m tired. 🥱 #mecfs #longcovid #mcas

It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...

I’m wrapping the ME community in a big, gentle hug today. We fight so hard. And today we’ll be outside the Department of Health and Human Services fighting for Medicaid access and against work requirements. More to come.❤️ #MillionsMissing @meactnet.bsky.social

I wasn’t planning to write anything for #MEAwarenessDay this year but I’m at my Mom’s & she pulled out a bunch of old photos for me & I’m just so angry for this little one. She deserved better than to have her fate sealed by misogyny & ableism before she reached 8 years old. #GreatestMEdicalScandal

The Middle Fork of Lagunitas Creek #lagunitascreek #lakelagunitas #mttamalpais #mttamwatershed #marinwater

Stony Brook University studied 80 people and found long COVID with neurological symptoms was linked to white matter changes in brain circuits for memory and attention, lasting about 2.7 years. www.sciencedirect.com/science/arti...

On the iPhone17e there is a fantastic feature that you can put the call on hold (from your end) and then the phone notifies you when to pick up! For some who can be drained by sound, this is great! No more listening to draining hold music.

Well #rhapsido must be fully out of my system mixed with pollen season I am having horrible #mcas flares. Woke up covered in sweat in the middle of the night. Feet swollen, heart racing, hot, and itchy. Need to get it under control bc I have iron infusion tomorrow.

To my mama who has been gone almost 30 years: You were a force. You helped start the first women’s crisis hotline in CA. Your funeral overflowed so they had to open up all the doors so ppl could try and hear. You loved me and my sister with every ounce of your soul. I was so lucky to have you.

Energy level can vary not just day to day but sometimes hour to hour. This is why pacing is important and learning to hear what your body is trying to tell you. Look, Listen, Learn. #mecfsawareness #invisibleillness #fibromyalgiaawareness #UnitedForME

Particularly animated convo with my spouse has left my body very heavy. As he was recounting a story he goes, “Your face is drooping. We need to stop.”

“Sunrise”, Monday 11 May, from Okitu Beach, Aotearoa / New Zealand. Blustery skies and chilly temps. Kia pai tō wiki / Have a good week. ☀️

When my legs are screaming PR lotion helps, but DAMN is it expensive. $35 a bottle which is supposed to last 12-ish applications. I tried bathing in sodium bicarbonate to see if I could get the same effect and that crashed me badly. Anyone have other ideas for sodium bicarb lotions?🧴

You know what helps even more? Money. Paid time off. Generous sick leave. Universal health care. Consumer protections. Abundant, affordable and accessible housing. But sure, let’s keep framing individual choice being the greatest factor here 🙄

I have had leg spasms, cramps and pain of varying levels every day for four years now. This can’t be good for my body. #longcovid #mecfs #pots #mcas

Sunrise, Sunday, 10 May, from Wainui Beach, Aotearoa / New Zealand. Windy as 💨 Ata mārie / Good Morning ☀️

I was telling my spouse about the new @netflix.com movie #apex and he goes, “Isn’t that exactly how your solo Australia van trip started out? You drove alone to the blue mountains?” 😂 I’m so glad my young person adventures never ended up as a horror story. #threesisters

My phone died and I got the iPhone17e and it’s awful. There seems to be some sort of blurring issue when scrolling text and it gets HOT while heating. Trouble shot with carrier and apple and we have to take it in. I am NOT happy they added one more thing to my spouses to do list. 😡

The bipap has been out of the house for a week and the tubing all thrown away and I’m STILL getting the plastic tubing phantom smells in my nose every now and then. What is #covid doing to our noses? #longcovid #mecfs #mcas #copd #pots

Yeah! SUPER site web en 🇨🇵!!!!! 🙏🫂