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
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
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
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
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 #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
2/
"There are so many ways that an #illness or #disability can fluctuate, so many ways that the effects of such can change. But when you do have a #fluctuatingillness or disability, it often comes with many of the same pitfalls of a #hiddendisability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others."
#chroniclife #hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll #MEcfs
#illness #disability #fluctuatingillness #hiddendisability #chroniclife #hiddenillness #InvisibleIllness #spoonies #spoonie #chronicallyill #mecfs
Chronic illness dress code guide
Shared with permission
#illnesshumour #illnesshumor #chronicillness @chronicillness @spoonies #chroniclife #Spoonielife #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll @mecfs
#MEcfs #CFS #PwME
#illnesshumour #illnesshumor #chronicillness #chroniclife #spoonielife #ChronicIllnesses #spoonies #spoonie #chronicallyill #mecfs #cfs #pwme
Back through the wild lens -
I feel like this again today. Chronic illness is relentless. #nude #chronicillness #photography #chroniclife #boobs #bath
#nude #chronicillness #photography #chroniclife #boobs #bath
Book I just came across: "Horizontal #Parenting: How to Entertain Your Kid While Lying Down"
Could be useful for #parents with conditions causing #orthostaticintolerance (intolerance to being upright)
Some reviews
https://www.mamasfacingforward.com/2022/12/03/book-review-horizontal-parenting-how-to-entertain-your-kid-while-lying-down/
https://www.amazon.co.uk/Horizontal-Parenting-Entertain-While-Lying/dp/179721134X
@mecfs @spoonies @parenting #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness
#chroniclife #Spoonielife
#hiddenillness #invisibleillness #pots @pots @chronicillness
#parenting #parents #orthostaticintolerance #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #pots
#LongCOVID: Alice Evans, #brucellosis, and reflections on infectious causes of chronic disease
https://academic.oup.com/cid/advance-article-abstract/doi/10.1093/cid/ciad427/7225581
“Many long COVID patients today will recognize the fatigue Evans describes in her request for work-from-home accommodations, & the frustration she describes at her colleagues’ suggestion that chronic Brucella infection is merely an excuse to collect disability insurance.”
@longcovid @chronicillness @spoonies #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#LongCovid #brucellosis #NEISvoid #chronicillness #chroniclife #chronicpain #spoonielife
Barely slept. #Migraine hangover. Exhausted. #ChronicPain #ChronicLife #Spoonie
#migraine #chronicpain #chroniclife #spoonie
From the @MassMECFS July e-newsletter
https://www.massmecfs.org/newsletters/856-2023-7-july-newsletter
Link to @jspotila's review:
https://occupyme.net/2023/06/19/lightning-book-review-crip-up-the-kitchen/
#chronicillness #chroniclife #ChronicPain #Spoonielife #MEcfs #CFS #MyalgicE #PwME @mecfs @spoonies @chronicpain @chronicillness
#chronicillness #chroniclife #chronicpain #spoonielife #mecfs #cfs #myalgice #pwme
I had a massive #migraine attack and I'm completely off. Brain fog, inside trembling, and generally feeling like shit. 😭 #ChronicPain #ChronicIllness #ChronicLife #Spoonie
#migraine #chronicpain #chronicillness #chroniclife #spoonie
Not having a twisted/sprained right ankle would definitely ease my errands today but.... 1st of next month I'll just order a new set of ankle braces, as I'll need them & my wrist ones next month for cleaning out the basement. Then hopefully by January I'll have built myself better ones. #ChronicLife #hEDS
A blog I was reading was asking for donations with a pop-up that said, "Like what you are reading?"
But my brain saw this instead:
"Like, WHAT are you reading?"
Which aptly describes my usual brain-fogged state, especially if I switch to a new tab! 😂
The other day I told my husband, "My super power is forgetting!" 💪
When your brain is fucked up and you have problems to articulate your thoughts properly, get frustrated, because the person you're talking to can't read minds and you can't words until the frustration flips into anger and you lash out.
Me. Today. Already apologize but the self-hatred spiral is very... slippery today. 😒
#MentalHealth #ChronicLife #Spoonie #Migraine #ADHD #AuDHD #Neurospicy #Depression
#mentalhealth #chroniclife #spoonie #migraine #adhd #audhd #neurospicy #depression
You know what's funny? The neurologist I went for my migraines did not hesitate to inject me with Botox, but medical marijuana to try to reduce the severity of the pain was evil incarnate.
Now, there is no clinical trail conducted, but the research done on the topic so far does show promise.
I'm getting opioids for my RLS without a problem, but medical marijuana? Nope.
#chroniclife #chronicpain #migraines #medicalmarijuana
[Automatic repost https://twitter.com/dystobot/status/1647987067861729284]
RT @AChVoice: "The more I can tap into my #creative side, the more I can produce the feel-good hormones so the rest of my day is more enjoyable": https://t.co/bzkZmtWrkw @dystoniabook1
#creative #reframing #Dysautonomia #chronicpain #chroniclife
@dreadfulsanity I get it, unfortunately.
#ChronicPain #Spoonie #Fibromyalgia #ChronicLife
#chroniclife #fibromyalgia #spoonie #chronicpain
Me: "It's like that that sound a tuning fork makes? Just in pain."
Everyone else: staring in confusion.
Just me? Can't be just me, right?
#chroniclife #chronicpain #spoonie
3/
It ends:
“All I ask is that next time, if you’re young and one of your friends has to keep canceling for mental or physical illness, give them the benefit of the doubt. And if you see someone young who is struggling, don’t tell them they should be grateful for their youth, give them your care, because they know all too well what they’re missing out on.”
#chroniclife #chronicallyill #spoonie
#chronicillness #spoonielife
@chronicillness @spoonies
#chroniclife #chronicallyill #spoonie #chronicillness #spoonielife
them in bags of compost, with drainage holes, until I can get them in the ground. My schedule is definitely lagging behind but, I'll get there. #ChronicLife #FoodForest