Chronically Pondering

I put together a short video on body confidence and chronic illness — not polished reflections, just some early thoughts. I’d really love to hear how others experience and think about these issues if anyone feels up to sharing. #chronicillness #bodyconfidence #mecfs

#chronicillness #wheelchairusers #mecfs #ambulatorywheelchairuser #energylimitingchronicillness #disability

“Just out here channeling my inner island vibes.” 🏝️🌴🐶 #chihuahua

Hi Cleo, thanks for your kind comment. I think red light therapy and infrared heat may be slightly different technologies. I have been meaning to look into infrared heat but I tend to struggle a bit with heat (due to suspected POTS). I’ll be sure to share some updates about the red light machine!

Thanks for your comment. That’s good to hear. This unit was around £60 pounds on Amazon. There seem to be other units that are more expensive that may be more efficient (as the red light is of a higher wavelength), but this unit was in price range I could afford. I also like the design.

Man's Search For Meaning By Viktor Frankl. 16 relatable applications with chronic illness.

"By spending your life, you are buying it...At the end of our lives, the quality of our #memories comes from the meaning we have created out of all the little #moments over the years.": buff.ly/XcMMJDH

#QualityOfLife #MondayBlogs #LifeLesson

A red light therapy device from Amazon.

Has anyone experienced any benefits from using a red light therapy device? I recently purchased a unit (that can be used whilst lying down with googles) and have been using it intermittently. I think it has been helping with my facial pain and stiffness. #chronicillness #redlighttherapy #mecfs

A photograph of Ellena’s chihuahua, Theo wearing a tropical bucket hat.

“Who needs a vacation when you are the tropical vibe? ” 🏖️🐾

A photograph of Theo wearing a bucket hat.

Bringing the beach party to the living room. 🐕🌴🌞

A photograph of Ellena wearing a polka dot dress.

Making the most of the summer sunshine. ☀️

can I interest you in the ambience of a woodland pond in summer

“Ah, my cooling blanket — proof that burrito life chose me.”

All dressed up for a day out… but I’m actually the guest of honour at a blanket burrito convention.

#chihuahua #chronicillness #mecfs

YouTube video by Exploratorium After Dark | IV Elements | Ana Roxanne

youtu.be/oSg8PJNtvus

‘My personal lockdown has been much longer’: on chronic illness, before and after Covid Life before was a little different, but not a lot. Now I feel a new resilience and hope

“Being hopeful is really just an understanding that you can do a little something good today, and a little something good tomorrow, and the day after, and that, together, these things will accumulate relentlessly. This is do-it-yourself hope” (George). www.theguardian.com/lifeandstyle...

I’m with you on this. 🙏😴

“Those of us with #chronicpain have something unique to offer, not in spite of our pain, but because of it. It's okay to grieve the losses of chronic illness. It's okay to be broken; everyone is in some way. Just because we're unfixable doesn't mean we're worthless.” —
Allison Alexander

A photograph of Elle’s chihuahua napping.

I live in a universe where coffee pretends to help, and naps are holy rituals. #chronicillnesslife #mecfs #disability

Does anyone else with a chronic illness feel that their life experiences are largely shaped by challenges, making it difficult to socialise with non-disabled people? Even when I have the energy for it, maintaining the positivity often expected in these interactions can feel alienating. #spoonie

As Rosmarie Garland-Thomson points out, one of the greatest challenges in encounters between disabled and non-disabled people is the assumption that “disability cancels out other qualities, reducing the complex person to a single attribute” (Garland-Thomson, Extraordinary Bodies 12). #disability

A photograph of a furless chihuahua in a fun onesie.

This hedgehog didn’t choose the onesie life—the onesie life chose them.

[Photographer unknown].

Aww. I love your pooches! Thank you. It's nice to come across you here.

Yet navigating social and structural bias requires constantly negotiating my sense of self against others’ perceptions of my disability. #chronicillness #disability

It’s tempting to believe we can be exceptions to structural discrimination. In social interactions, I often hope—perhaps vaguely—that others will recognise that disability shapes my experiences and identity without defining my entire life. #chronicillness #disability

As a disabled person, as a woman, as a person on the margins, you are constantly navigating systems, structures, and assumptions that wear you down, delimit your agency. In those moments, confidence isn’t simply performative — it’s necessary. A way to survive, to say: I exist. #chronicillness

I think vulnerability is powerful in its own way — it connects us, grounds us, reminds us we’re human. In many ways, recognition of our own vulnerabilities requires a certain strength. But, as disabled people, there are days when life doesn’t let us rest in that softness. #disability #chronicillness

Here's a picture of me hanging out with my best furry bud, Minky. #spoonie #chronicillness #MECFS #disabled

I hope this can be a space where we share stories, exchange insights, and support one another in enduring challenges and finding ways to live well with long-term illness. If you have similar experiences, I’d love to hear from you — you are very welcome here. #chronicillness #MECFS #spoonie #disabled

Hello and welcome, I’ve lived with ME/CFS for many years and am a wheelchair user. I created this page to share my experiences with chronic illness and, most importantly, to connect with people who have shared experiences. #chronicillness #MECFS #spoonie #chronicillnesscommunity #wheelchairuser