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Tom Kindlon · @tomkindlon
777 followers · 2065 posts · Server disabled.social

8/

"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."

@chronicillness @spoonies @mecfs @longcovid


#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2060 posts · Server disabled.social

7/

"You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently."

@chronicillness @spoonies @mecfs @longcovid


#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
777 followers · 2059 posts · Server disabled.social

6/

"Fluctuating conditions are also shockingly unpredictable, especially at first, when you don’t know what will trigger a flare or are not yet experienced enough to recognize the warning signs."



@chronicillness @spoonies @mecfs @longcovid

#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social
Open media

#illnesshumour #illnesshumor #chronicillness #chroniclife #spoonielife #ChronicIllnesses #spoonies #spoonie #chronicallyill #mecfs #cfs #pwme

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
725 followers · 1827 posts · Server disabled.social

Huffpost: I Begged My Doctors To Figure Out What Was Wrong With Me. Instead, I Was Medically Gaslit

rb.gy/uewja

Julie Strack on her experiences as a sufferer & how this has given her "a firsthand look at the dismissal faced by patients, especially women, who have " & that this is "a familiar story for many people with illnesses as and / , or ME/CFS"

@longcovid @mecfs

#LongCovid #ChronicIllnesses #chronicpain #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #pwlc

Last updated 1 year ago
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EU-OSHA 🇪🇺 · @EU_OSHA
34 followers · 1029 posts · Server respublicae.eu
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📑Our new discussion paper sheds light on the and risks related to work for , persons with disabilities and , women, and other groups of workers.

🔎Discover it now: osha.europa.eu/en/publications

🐦🔗: n.respublicae.eu/EU_OSHA/statu

#workingconditions #SafetyandHealth #DigitalPlatform #migrants #ChronicIllnesses

Last updated 1 year ago
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hiding from plagues ☣️♿ · @smollestbunny
673 followers · 10806 posts · Server kolektiva.social
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One pant leg done. Still need to do the other, the pocket extension is finished, the patches in the back are finished, just need to add another small patch on the inside in the front, then it's finally done! Many many hours of slowly fixing them while generally unwell.

#LongCovid #ChronicIllnesses #HandStitching #slowfashion #clothingrepair #handsewing #handsewn

Last updated 1 year ago
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Betty Burlesque · @grotesqueburlesque
83 followers · 654 posts · Server mas.to
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#chronicpaindisorders #ChronicIllnesses #dailybattles #MentalHealthMatters #mentalhealthawareness #dvsurvivor #borderlinepersonalitydisorder #depression #severeanxietydisorders #cptsd

Last updated 1 year ago
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Betty Burlesque · @grotesqueburlesque
83 followers · 654 posts · Server mas.to
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#bekind #chronicpaindisorders #ChronicIllnesses #dailybattles #MentalHealthMatters #mentalhealthawareness #dvsurvivor #borderlinepersonalitydisorder #depression #severeanxietydisorders #cptsd

Last updated 1 year ago
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Betty Burlesque · @grotesqueburlesque
83 followers · 654 posts · Server mas.to
Open media

#chronicpaindisorders #ChronicIllnesses #dailybattles #dvsurvivor #MentalHealthMatters #mentalhealthawareness #borderlinepersonalitydisorder #depression #severeanxietydisorders #cptsd

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

2/

Among other things, Myalgic Encephalomyelitis has left me too ill to date for the last 28 years.

My thoughts today are with those who, partly or fully due to chronic illness, are not in a relationship today.


@chronicillness @spoonies

#valentinesday #valentineswithnobody #valentinesday2023 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #meeps #NEISvoid #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonie

Last updated 1 year ago
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Dwight (DB) 🤔 · @dabertime
1759 followers · 4687 posts · Server mstdn.social

When and stopped me from working, it took away much of my identity. Or so I believed.

Once I dealt with the grieving of what was lost, and there is grief, I began the process of identifying my blessings, joys, my core values, interests, passions, strengths, empathy, what and who I truly care about, love, people in my life regardless of my work or what I could or could no longer do, friends, family, community.

Are these not a better representation of Who we are?

#chronicpain #ChronicIllnesses

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

4/

"As we meandered through this system, dazed and confused, the weeks have turned into months. We’ve now been on this hamster wheel for three years. Naturally, you feel like criminals — lawyers, experts, courts, procedures and appeals. You battle on knowing this has been designed to make you give up."





@chronicillness @chronicpain @spoonies

#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

3/

"Rather than promoting learning and understanding of the nuances around chronic illness, the UWV packages all patients into a blob of the insoluble and leans prejudicially towards your illness being a temporary situation. One day you will get better"





#NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

3/
“, , , & are just a few that present with complex ambiguities. As a part of human nature, we don’t like ambiguity. We prefer concrete evidence and proof. However, not every chronic illness allows for this. So, when you and your loved one are confronted with such a journey, start at a place of compassion and validation. Next, cultivate a sense of understanding and acceptance”

#myalgicencepahlomyelitis #fibromyalgia #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #LongCovid #ChronicIllnesses

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

Bateman Horne Center: Believing the Loved One (2021, but timeless)

Written from a therapist’s perspective, this one-page letter addresses the importance of believing and validating the loved one’s experience with chronic illness.

batemanhornecenter.org/wp-cont

@chronicillness @mecfs

#ChronicIllnesses #mecfs #LongCovid #fibromyalgia #pots #mcas

Last updated 2 years ago
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Lightning Duck · @LightningDuck
25 followers · 171 posts · Server spoonie.community
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A matter of perspective

#multiplesclerosis #ChronicIllnesses

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
277 followers · 74 posts · Server disabled.social

“Holiday* Survival Guide” (2016)

batemanhornecenter.org/holiday

Refers to /#ChronicFatigueSyndrome & but will also resonate with people with other conditions &

@mecfs @chronicillness

*Christmas, Thanksgiving, etc.

#MyalgicEncephalomyelitis #fibromyalgia #spoonie #ChronicIllnesses #mecfs #cfs #pwme

Last updated 2 years ago
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Lanie Carmelo · @Laniebird91
122 followers · 73 posts · Server disabled.social

Today, things were somewhat better, but she still slipped up, telling me to go back to taking one of my meds, which I had been taking 3 times a day, "once a month" instead of once a day. She also told me that is "just pain." This is one of my main , and I've had it since 2011, so I know what it involves. There is way more to it than pain, and "just pain" can be pretty disabling. I think this was one of the incidents that aggravates me the most.

#fibromyalgia #ChronicIllnesses

Last updated 2 years ago
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Tom Kindlon · @tomkindlon
166 followers · 16 posts · Server disabled.social
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Somebody shared the following previously saying:
"I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much"

Here's the TikTok link: tiktok.com/@jeremyandrewdavis/




Re-post as deleted original in error

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #NeuroME #millionsmissing #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #ChronicIllnesses #spoonies #spoonie #chronicallyill

Last updated 2 years ago
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