#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin
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Hashtag
#nesvoid
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The two wolves inside of me today are one who wants to go spy on birds, one who needs to do laundry, and one whose legs hurt.
The wolves can’t count.
#NESvoid #pwME #AuDHD
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I got back safely too. I’m learning that as a #pwME stress is even more of a trigger than exertion. Escaping, however temporarily, from the fascist nightmare gave me the fuel to come back and keep fighting. It is a gift; it feels nearly miraculous. #NESVoid
10/10
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It's my birthday month! I am getting myself the gift of 2 cataract surgeries bc I'm greedy like that!
#aquarius
#NESVoid
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Okay, for once I am actually posting with a question mark and looking for sources.
Does anyone have any link to an #MCAS related study that discusses how taking two different second gen H1 antihistamines can work better than increasing the dose of one? (cont.)
#NESVoid #LongCovid
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Any advice on rest, pain management, or food from folks with the #POTS #MCAS #EDS trifecta is welcome, even if it doesn't quite fit for me. #NESVoid
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I feel like Im stuck in purgatory.
I cant sleep in any way that brings rest.
I cant eat anything that doesnt make me feel awful.
I have to beg daily to survive power structures crushing me & never tally enough for medical needs or stability & have to move on from unmet needs constantly.
#NESVoid
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Currently playing:
(stuff I can play on my phone bc Im stuck in bed when awake #NESVoid)
- Blue Protocol
- Genshin Impact
- UmaMasume
- Cats & Soup (all 3)
- Cat Mansion (mergy with cute story, got me with a version of lil match girl with a happy ending 🥹)
- Hero & A Garden (FAFO fable, but cute)
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Has anyone else who struggles to function without having to apply a heating pad every 10-30 minutes or so figured out any solutions?
#EDS #NESVoid
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I was hoping to get the tree up for Solstice but it didnt happen. Its out. We've been outting it together for 2 days because energy is so lacking...
It is wild to exist like this.
I feel like an Ent, but barely awake. #NESVoid
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#DisabilityCommunity #NESVoid
Does anyone have recommendations for books on somatic therapy, somatic healing, CPTSD, etc that are #disability / #chronicillness friendly, non-gaslighty, trauma-informed etc?
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I haven’t thrown up in 5 days. First time in 21 years. I think this shit is working. All hail off-label meds. #NESvoid
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Good Trouble Protest 7/17 - ONLINE
For those who cannot attend an in-person event, North Country NY Indivisible is hosting an on-line event! July 17th, 7:30 pm- 9:30 pm EDT. More info. and sign up here:
www.mobilize.us/john-lewis-a...
#goodtroubleliveson
#NESVoid
#MECFS
#LongCovid
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Am I craving sweets because:
a. I need carbs/sugar because I barely ate today
b. I’m flirting w/a crash & my body is looking for emergency energy
c. I’m after the dopamine/mood boost
d. All of the above
#nesvoid
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two good-ish days this week & now today i can barely even stay awake. i hate this.
#NESVoid
#fibromyalgia
#mecfs
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#Clinician's Roundtable with Tania Dempsey, MD Dr. Dempsey will give a 45-minute lecture on #vector-borne illnesses often seen as co-infections in #MECFS and #LongCovid, followed by a 15-minute Q&A. https://us06web.zoom.us/webinar/register/2117347281730/WN_qDphjDHhQa-OXwLpvxgEAw#/registration #infectious #medtwitter #medX #patientled #nesvoid #pwME
#Clinician's Roundtable with Tania Dempsey, MD on Mar-14
Dr. Dempsey will give a 45-minute lecture on #vector-borne illnesses often seen as co-infections in #MECFS and #LongCovid followed by a 15-minute Q&A.
us06web.zoom.us/webinar/regi...
#infectious #illness #medX #patientled #nesvoid #pwME
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A corner landing by my stairs where I display small paintings I make. An old mirror with red swirls border reflects them. At top is an imagined sunset of the Mars atmosphere, where our sun appears blue. Lower left is The Green Slime and next to it is The She Creature. Behind her, a wintry full moon through bramble trees is shown. All works by Bethany McCraw courtesy of Jackey Neyman Jones Online Art, hosted by Dumb Industries. For more info & sign up: Dumb-Industries.com/Jackey . Since long Covid I haven’t been well enough to go to a museum or gallery so I display my own art in this little corner and pretend it’s a showing. My art is mostly sort of cartoony and whimsical with the monsters especially silly. Most everything is in simple primary shades with accent colors like green or purple. I’m grateful for the online community of artists and to be a part of an art scene, small and inconsequential as it is. Art is good for you. Since developing this small practice I believe it has helped restore a small bit of neurological function. Excelsior
The current #art corner
#ArtFillsTheVoid
#NESvoid
#LongCovid
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#Adenomyosis #NESVoid
I'm tired of being tired.
I'm tired of being ruled by my fucking uterus!
I swear am going to lose my shit if this upcoming period isn't my last!
Waiting on this wait list is driving me stir crazy.
Can't take it anymore!!
Hurry up hysterectomy 😭
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As selfish as it seems to some, every day I wake up now, I pray on that day I will get a call from the #gynaecologist office that there is a cancellation slot free for me to have my surgery sooner than later!!
#Adenomyosis #NESVoid
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My Dr put me on pregabalin yesterday & honestly looking at the info sheet & side effects, I'm not keen. It's a med you can't just suddenly stop. Those who know me know my foot/ankle/leg swells up & this med can cause swelling! My Dr knows this!? Does anyone take it!? Advice? #NESVoid
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Been having a hard time sleeping in, which would be a good sign, if I still wasn't tired during the day. Body still says it needs more sleep...
#NESVoid
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Mood: blocking people suggesting stairwells should have emergency slides for people who use wheelchairs #NESvoid
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you know what to do
Heads up #disabilityVoid #NESVoid:
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So..... I have been re-referred to a Spinal Specialist.
I just can't right now.
So damn frustrated.
#Spine #Spinal #DiscDegeneration #SpinalStenosis
#Sciatica #Scoliosis #NerveDamage #ChronicPain #NESVOID
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✅️ Rate your #MD.
The cream rises to the top.
www.ratemds.com
#medical #doctor #physician #longCovid #MECFS #Dysautonomia #POTS #MCAS #lyme #iaci #chronicillness #millionsmissing #nesvoid #clinician #ESKD #CKD #health
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I have both physio and massage therapy appts today. Either my body will have me extra, or some things will cancel out and I'll have the best sleep ever.
#NESVoid
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Today I’m having the realization that I’m one of the “people” who gets checked on when the weather is bad and you need to protect people, plants, pets, pipes.
I do not like this reality. #NESVoid
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I'm too tired to go to all these doctors' appointments, on account of all the things I need to see the doctors for.
#NESVoid
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So far, I’ve been Dx’d w/ essential hypertension, hypercalcemia, & a high PTH level (but we don’t know why, yet. Endocrinology in 10 days.)
New, this is all new.
Coincidence or causation? #LongCovid? #PostViralComplications?
#NESVoid 2/2
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