Instagram story viewer> @siobhansimper> Tagged

Siobhan Simper

@siobhansimper

3.3K

followers

1008

following

Mixed (lolly) bag of sewing, knitting, chronic illness/disability & makeup. ME/CFS #MillionsMissing. Cis/she/her. On Wadawurrung land.

POSTS STORIES REELS TAGGED

💙 May is ME/CFS Awareness Month 💙
(And today, May 12th, is MECFS Awareness Day!)

ME/CFS:
ME/CFS is short for myalgic encephalomyelitis / chronic fatigue syndrome. Some common symptoms of ME/CFS are overwhelming fatigue, worsening symptoms after physical or mental activities, and problems with thinking, sleep, pain, and dizziness.

People with ME/CFS cannot function the way they used to before getting sick and often struggle with daily tasks, attending work or school, and having a social life.

Post-Exertional Malaise (PEM):
Post-exertional malaise (PEM) is the hallmark symptom of MECFS and is a flare-up of symptoms or the appearance of new symptoms after exertion. Physical activity, mental overexertion, and sensory overload can all trigger PEM.

Exertion is anything that can stress or strain the system, not simply exercise. Some triggers include standing or positional changes, long conversations, scholarly work, loud noises, bright lights, emotional interactions, and environmental changes.

Pacing:
Pacing is a strategy for managing symptoms, especially fatigue, by balancing rest and daily activities. People living with various health conditions, including ME/CFS, fibromyalgia, and chronic pain, utilize pacing to help with symptom management.

With ME/CFS, pacing can improve quality of life and prevent disease progression for many, but ME/CFS can still progress in some cases, especially if someone is caught in the boom/bust cycle (i.e., where people keep going past their limits and crash.

Energy envelope:
When an individual stays within their “energy envelope,” they have determined their energy limits for mental, emotional, and physical activities and stay within them. This is difficult to do as energy limits can change frequently and without warning.

According to a recent study on ME/CFS, energy envelope theory asserts that “patients who maintain their expended energy at a level consistent with their available energy will have better health outcomes and quality of life than those who over-expend their energy levels.”

#ThisIsME #MECFSAwareness #UnitedForME #MillionsMissing

TBC and IDs in comments. All tags in comments.

467

37

Imagine yourself or your children in this⛺ situation. Please help me, if only a little, to contribute. The link is in the bio. Please share😭 it everywhere

13

23

Today we continue to look at government funding of ME/CFS & Long COVID research around the world, this time in Australia 🇦🇺

Over the past 5 years, the Australian Government has allocated:

- $48 million to Parkinson’s research
- $44.9 million to MS
- Just $3.3 million to ME/CFS (and nothing since 2020)

This is despite ME/CFS affecting around 100k - 260k Australians and being one of the most disabling chronic illnesses.

It’s time for consistent funding to reflect reality!

For Long COVID, the Australian Government has committed AUS$50 million over three years (2024-26) to research Long COVID through the Medical Research Future Fund (MRFF)

Thank you to Lisa, one of CrunchME's volunteers, for bringing together the numbers on this 🙏

#mecfs #longcovid #spoonie #chronicillness #crunchme

136

11

NEW SEWISTS TO FOLLOW ❤️✨⁠⠀
⁠⠀
We loved having @sewprettyinpink on the podcast this week! ⁠⠀
Andie shared their favourite sewists to follow and we have rounded them up here for you:⁠⠀
⁠⠀
✂️ Photo 1: @marie_stitchedup⁠⠀
✂️ Photo 2: @michebemason⁠⠀
✂️ Photo 3: @sewdisabled⁠⠀
✂️ Photo 4: @sewpositivity⁠⠀
✂️ Photo 5: @whatlydiamade⁠⠀
✂️ Photo 6: @siobhansimper⁠⠀
✂️ Photo 7: @purplesewingcloud⁠⁠⠀
✂️ Photo 8: @thecamdenstitch⁠⠀
⁠⠀
Do you have a favourite sewist to follow that is living with a chronic illness or disability? Comment below and share 💖⁠⠀
⁠⠀
[Image description: A round-up of 8 sewists, each displaying their me-made garments. Photo 1: @marie_stitchedup sits in her wheelchair wearing her handmade #sicilyslipdress; Photo 2: @michebemason is wearing #seamworkbo while sitting in their wheelchair; Photo 3: @sewdisabled sits in her wheelchair wearing her @tillybuttons #sewingjoni; Photo 4: @sewpositivity shows off her handmade skater dress and removable wheelchair cover; Photo 5: @whatlydiamade shows off two versions of the #waikeriedress; Photo 6: @siobhansimper wears a handmade Burda 04/2010 114 shirt with their pink cane; Photo 7: @purplesewingcloud is wearing the @tillybuttons #sewingbobbi; and, Photo 8: @thecamdenstitch wears a vintage McCalls top and the #seamworkdorian pants. End.]⁠⠀
⁠⠀
#LoveToSewPodcast #WeLoveToSew #SewingPodcast #HandmadeWardrobe #MeMadeEveryday #MeMade #Sewing #HandmadeFashion #Handmade #Sew #Sewcialists #ISew #MakersGonnaMake #SewingLove #IndieSewing #MakersCommunity #DisabledSewing #SewingDisabled⁠⠀
⁠⠀
⁠⠀ A series of disabled sewists to follow.

1k

39

Live on the blog! 💄
The sequel nobody’s been waiting for... 10 MORE Shitty Things Nobody Tells You About Life With Chronic Illness, now with extra shit!!! 💩💩💩
Support disabled bloggers!
Link in bio or https://rivetlicker.blogspot.com
.
#chronicillness #chronicallybeautiful #spoonielife #alwaystired #chronicfatigue #systemiclupus #chronicallyfabulous #rivetreview #spooniebeauty #crueltyfreebeauty #cfblogger #crueltyfreecosmetics #bbloggersau #bbloggeroz #ausbeautybloggers #bloggersunitedau #aussiebeauty #aussiebeautybabes #instabeautyau #discoverunder10k #discoverunder100k #digitalbeautybabes #disabledblogger

22

3

Stuff to read/watch/listen to on the ongoing conversations on racism, LGBT+ lives, access for disabled persons, plus size designs/patterns in the clothing and craft industry, and environmental concerns.
___
1. @burkehousecrafts On recent events
https://burkehousecrafts.com/2019/03/12/can-i-just-clock-out-now/
___
2. @_unfinishedobject On caution with discussions of race lead by white persons
https://www.unfinishedobject.com/blog/2019/3/2/to-white-race-educators
___
3. @mattbaume On updates over the last week of policies and events affecting LGBT+ persons
https://youtu.be/ncaMBJgFPw4
___
4. Maria Godoy (NPR) On the importance of flexibility in plastic straw bans for disabled persons [saw this topic discussed on @siobhansimper ]
https://www.npr.org/sections/thesalt/2018/07/11/627773979/why-people-with-disabilities-want-bans-on-plastic-straws-to-be-more-flexible
___
5. Dan Charles (NPR) On addressing climate change
[saw this article through @ajabarber ]
https://www.npr.org/sections/goatsandsoda/2019/03/11/688876374/its-2050-and-this-is-how-we-stopped-climate-change
___
6. @sewprettyinpink On plus size fashion history
https://sewprettyinpink.com/2019/01/24/fashion-and-sewing-industry/
___
7. @alokvmenon Check out the post with video clips from 6 days ago on the recognition of dignity of 'women and non-conforming gender' persons [amazing video]
___
8. @siobhansimper On racism in the crafting community
https://chronicallysiobhan.com/2019/03/08/racism-in-the-fibre-crafting-community/
___
9. @clothedinabundance On racism in the ethical fashion industry
https://clothedinabundance.com/style/unraveling-the-racial-power-dynamics-woven-in-ethical-fashion-industry-part-one
___
10. Aamer Rahman (comedian): quick, funny clip on reverse racism
[found this through @little_kotos_closet ]
https://youtu.be/dw_mRaIHb-M
___
#diversity #representation #antiracism #lgbtsupport #plussizefashion #disabilityaccess

12

4

SHAMELESS DOG PROMOTING CAUSE POST- I’m a pretty lucky hound. Ever since I was adopted my human is always home, usually lying down and almost always up for some snug times.
But recently, my cuddle full doggy world was rocked by a bombshell! She told me she actually wishes she could leave me every day to go do that work thing she loves and hang out more with other humans.
As she can't do too much active stuff, she’s doing a sponsored silence to raise awareness of people with severe ME (Myalgic Encephalomyelitis), as they are often so sick they can’t speak for years. She is raising money for the Open Medicine Foundations End ME/CFS Project, which has a bunch of scientists with serious cred working on the problem, but very little government funding.
I have been promised more beach trips and park times than ever if the lab coats can crack this case. So to get me beached up and sandy sooner, please consider sharing the fundraiser or donating if you’re able. The link is in my bio. (It felt strange writing this in dog, but if you made it this far I really do thank you for your time, and would be beyond grateful if you’d consider sharing or donating to the cause, Jess x)

236

9

A #StyleArc classic! The Blaire Shirt 🙌. This tropical twist on one of our favourite patterns is making us want to book a holiday! Thanks for sharing this snap @siobhansimper.

What’s your all-time favourite Style Arc pattern? Let us know in the comments below!
.
.
.
.
#StyleArc #StyleArcWardrobe#StyleaArcPatterns #isewmyownclothes#memade #memadeeveryday #sewcialist#capsulewardrobe #imakemyownclothes#handmadewardrobe #fashiongram#sewingpatterns #aussiebrand#australiansewingpatterns #amazonfashion#etsyfashion #amazon #etsy #seamstress#winterstyle #memademonth #memademay#mmm #sewing #sew #ilovetosew #regram#fashionofinstagram

335

5

😄👏 @siobhansimper
"Crummy story photo* but I felt this was a very happy occasion worth sharing with the world. I had my first haircut in maybe 2 years today? It was so nice to go out and chat with my hairdresser and just feel a bit normal, even if only for 1/2 an hour."
🌻🌻🌻🌻🌻
What's a little big thing that lets you disconnect and just enjoy, but that you haven't gotten yourself out there to experience lately? Identify it and set a goal, sisters! 🦋🎊😊👏💗
* in no way a crummy photo, incredibly gorgeous and glowing, girl!

323

24

@macmillanisms modeling her #easter present (don't worry, she also got #chocolate ) because we decided to be fancy people and put on our very own mini #photoshoot .
👕: @siobhansimper
stairs: models own
💄: model's sister's. [ image description: my sister is lying on the stairs, smiling up at the camera with her long brown hair behind her. she's wearing black jeans and a blue v-neck tshirt with 'cure ableism' written on it in white font. ]

#cureableism #redbubble #chronicillness #disability #butyoudontlooksick #invisibleillness #spoonielife #spoonie #spoontheory #favouritehuman

50

7

This winter, there's been a whole lotta love for our #berlinjacket pattern. Swipe left to check out a toasty selection from @astitchtoofew @sewbrunswick @bella_zilber @mafewandering @chronicallysiobhan @jenndumon @sew.h_factor #tessutipatterns

700

14

No more silence. #cfsselfiesdontkeepmequiet ... @oliviahcole campaign to get this awful illness recognised. Please join in (take a photo with m.e written on your finger and the 'ssshh' sign) you dont need to have M.E to participate. There is still time to sign the petition also above in the link or my FB page... if you are from the UK and haven't. Thank you for everyones support . please check out @the_circle_game too who has a list of people, we'd like to contact if anyone has twitter, please. It's slow as everyone is just so ill... In the last few weeks, there have been a number of deaths (6 i know of in the past month) R.I.P jodie bassett 11/6/16 , louise Rampage (exact date unknown ) , tink Bastion 23/6 , linda hayes Burke 23/6. Severe M.E kills. Sorry about the serious post but it felt important. Sending love everyone xxx ps please check out @forever_rainbowsoul for other links and inspiration . X #myalgicencephalomyelitis #butyoudontlooksick #pots #posturalorthostatictachycardiasyndrome #fibromyalgia #fibromyalgia #fibrowarrior #migraine #sunnysideup

216

43