Tag Archives: MECFS

ValentIllness hashtag and a finally finished textile art project!

Suzanne Forbes in pink and red textile art vest February 2024What on Earth is ValentIllness??

red tops for Chronic Illness Awareness on Valentillness DayIt’s a chronic illness hashtag & selfie idea for Valentines from Long Covid activists @desertdracula and @mamasitaa__ /Seets.

I saw their posts on twitter on Feb. 14 and decided to quickly jump in with this picture.

I was wearing a red top already, which makes a difference in energy calculations for people with Energy Limiting Chronic Illness!

 

I got my husband to take these pictures today, which show off the vest a little better. It’s very pretty!

Suzanne Forbes pink and red textile art vest February 2024I’d been working on this textile arts vest for a year.

Lying on the couch sewing is pretty much the only “fun” (as opposed to drawing, which is work) creative activity I can do anymore. I have had terrible pain in my hips/butt for over a year, which makes sitting up at the craft table too painful even when I am strong enough to sit up.

I saw a bone doc and had a hip MRI last winter, but then didn’t follow up on it, as my pain drastically improved during my Shingrix vaccine and antiviral remission last spring. It came back in the Fall.

The dull, burning, constant pain is so bad now it takes my breath away sometimes. It’s probably sciatica, or other nerve related pain.

I really need to get on it, and the doctor is one of the nearest to us, but it’s really hard, because I can only do at most one thing involving other people a week, and leave the house once a week at the very very most.

And I already have so many doctor visits booked for the next three months!

Plus, the pelvis bone doctor is one of the most ignorant and gaslighty about Covid. I was sitting in her office waiting last January, in my prescription goggles and FFP3 mask, and I opened the window for ventilation. When she came in, she promptly closed it. She said, “I don’t want to get a cold from being cold.” Honestly, how can you trust a doctor who doesn’t know that colds come from viruses?

We are in hell, and doctors and Surgeon Generals are fanning the flames.

Sorry to end on a bummer!

Go Blue for MECFS and the Millions Missing!

goblueformecfs May 12Today is May 12, International MECFS Awareness Day.

I’m already wiped out from all the online awareness stuff I’ve been doing all day. But I wanted to share some of it here, on my online homebase.

goblueformecfs May 12I made lots of graphics!

There’s a social campaign called #goblueformecfs I really like. The idea to use the hashtag on a post of yourself wearing or with something blue. The blue ribbon for ME dates back to 1995.

It wasn’t hard for me to wear blue!

It was a nice chance to show all my blue textile arts projects.

photo by ZIlle Defeu of Midori performing at Feminas Potens in 2010. Suzanne Forbes is drawing in the background.I shared a little about what having MECFS has cost me.

Here’s a photo taken at Femina Potens in 2010, by Zille Defeu. Midori performing and me drawing in the background.

Victoria Copeland with Millions Missing pillowcase 2023

Victoria Copeland with Millions Missing pillowcase 2023.

MECFS affects millions of people of the Global Majority.

This is policy analyst, researcher, abolitionist praxis MSW and MECFS patient, Victoria Copeland. Vee is wearing her MEAction Still Sick Still Fighting shirt and lying on the Millions Missing pillowcase she made for the 2023 action in Washington DC. I asked her if I could share her picture with her info, because she deserves a treatment for this terrible disease.

GoBlueForMECFS art by Victoria Aronoff aka Stupid Sloth Cards May 12 2023

GoBlueForMECFS art by Victoria Aronoff aka Stupid Sloth Cards May 12 2023

This isn’t about me.

Personally. I’ve had a lot of life, a lot of lovers, and lots of my dreams came true. I’m one of the lucky ones… and one of the privileged ones. But #mecfs is a disease that strikes traumatized bodies, that strikes mostly AFAB people, including trans guys, that you have to convince your doctor you have. It’s a disease that invisibly disables and kills BIPOC people, and they almost never get help or justice. The #medicalracism is enormous. Vee deserves the life she wants and to do the work she wants to do in the world. The world needs her.

So please @goblueformecfs for young people, for aunties, for moms, for trans guys, who have never gotten any help.

Here are some resources:

MEAction’s Resource list.

Mepedia

Health Rising is our favorite site for ME research news

Deutsche Gesellschaft für ME/CFS (German Association for ME/CFS) Run by volunteers, that’s how fucking underfunded this disease is!

And there’s so much more to say, but I am exhausted.