#POTS
525 strokes #rowing for 29 minutes. I got frustrated at #DarkHorseRowing's video (my fault, not his) so I shut it off & turned on Fleetwood Mac. Delightful row, challenging myself when my mind wandered into the lyrics to bring me back to my workout. My heart rate isn't as high as I need to be. I think I need to consider going off beta blockers, which is frightening. Two of my most common #POTS symptoms were heart pain & tachycardia. Uncomfortable.
#Passagierkapazitäten von #Flugzeugen:
Boeing 747-8 Intercontinental: 605
Boeing 777-300ER: 550
Airbus A350-1000: 480
"Corona in den USA: Lage verschlechtert sich – Mediziner besorgt
Wöchentlich sterben in den USA 500 bis 600 Menschen an Corona. Ob die Variante Pirola schwerere Verläufe auslöst, ist noch offen."
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
"Corona: Wer Maske trägt, ist kein Schisser, sondern ein Beschützer"
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
79% of people with #LongCOVID would also be considered as having #POTS, an unnecessarily rapid heartbeat when standing up. Dr. Griffin emphasizes that more people with LC should be tested for POTS. Something like the NASA Lean Test would work.
#TWiVTLDR 8/
Today I learned that a standing stone, or menhir, can also be called an orthostat. Neat!
But it made me wonder - do folks who don't like these stones have orthostatic intolerance? 🤔
People can also donate here:
Venmo: Emily_rj
CashApp: $ERoseJ
PayPal: emilyrjohnson
I’ll add any cashapps donations to my GFM fall neurosurgeries goal, ty 💜 https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
#MutualAidRequest #MillionsMissing #EDS #pwME #LongCovid #MedStadon #MESpine #POTS #MCAS #Mito
If you don't know know where to start, the best resource that I know of is YouTube. I downloaded the YT app on my tv. There is every type of #exercise on there. FREE. Some of the keywords I first used to search were- easy, beginner, light, stretching, prone (I still can't exercise standing up without feeling lightheaded). It doesn't have to be long- keep it under 10-15 minutes. Consistency is the key. Keep coming back to it. Make it part of your routine. Make it a priority. #POTS
Recently @ashhultman, me and others wrote to @NIH to request research funding covers the brutal intersection of #MECFS, #EDS and spinal issues
Many doctors don’t know how severely these conditions escalate — millions of us are left untreated, then end up severely more disabled and needing more serious and complex surgeries #MEspine #pwME #POTS #MillionsMissing #LongCovid #MCAS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
Neglected tethered cord syndrome #TCS caused a lumbar herniation, scoliosis, multiple herniated cervical discs, stenosis, bone spurs, degenerative disc disease, nerve damage, craniocervical instability #CCI
I may have to get neck neurosurgery too so please give what you can! #EDS #MESpine #pwME #MECFS #LongCovid #MillionsMissing #MCAS #POTS https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
I need a tethered cord release with lumbar disecotomy — doctors in Nebraska, Georgia, Iowa didn’t help (or even look) so I must see the $$ #EDS tethered cord expert and her colleague in Rhode Island
#TCS has been disabling me since birth #MedTwitter #pwME #MCAS #MECFS #POTS #Mito #LongCovid #MEspine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
I have an infection so no energy to do many tweets like I have raising funds for others
$22K only covers neurosurgery care now — I may need more neurosurgery next year
Pls share if you can’t donate! #LongCovid #DisabledSocial #MedStadon #EDS #pwME #POTS #MCAS #LongCovid #MESpine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
Trying to get the strength to call my doctor's office for the 100th time this morning to try to get them to correct the specialist referral they sent for the 4th time because the specialist can't see me for what I need to see them for unless the doctor has written it on the referral even when I seem to know more about why I'm seeing them than the doctor does. (They wrote a referral for a diagnosis I already had 8 years ago...)Dealing with him is so frustrating that I usually end up in tears and then he tries to offer me psych meds. It's like, I'm sorry this isn't a brain imbalance, this might genuinely be a you problem.
#healthcare #healthcareInCanada #healthcareWhenPerceivedAsFemale #medicineWhenQueer #CanadianMedicine #FML #chronicIllness #chronicPain #mecdf #pots
42 minutes of level 1 #pilates on YT this morning. Great practice. Feeling strong when I step on the mat. Every time I have a workout, regardless of the #exercise, I feel more & more hopeful that I can actually put my #POTS into remission this time. I'm anxious that I have to do a stress test next week with the new #cardiologist. And if I'm being honest, I know I have to start #StrengthTraining & that's when I historically fall off the wagon.
I rested yesterday. I stopped taking my iron supplements last week & it caught up to me. Zero energy.
Today I did 527 strokes in 27 minutes listening to #DarkHorseRowing on YT. And 20 minutes of stretching yoga. Funny, I was done around 3:00 & was exhausted but now it's almost 6pm & I'm sitting here thinking... I have energy.
#KickingTheShitOutOfPOTS #MaybeItShouldSayRowingTheShitOutOfPOTS #POTS
@stadt_leipzig In dem Büro im Kohlrabizirkus habe ich diese Wanddose gefunden. Weiß jemand, was das ist? Wegen des dünnen Kabels und >3 Kontakten tippe ich auf mehrere Telefonleitungen oder irgendeine Sprechanlage.
#DDR #Elektrik #VDE #Telekommunkation #POTS #Telefonie #leipzig
2022 begann in der Bad Saarower #Helios-Klinik zusammen mit der Berliner #Charité eine Studie zu einer neuen Behandlungsmöglichkeit für #LongCovid Patienten. Genutzt wurden die #Überdruckkammern eines ortsansässigen Tauchunternehmens für die Untersuchung einer #Sauerstofftherapie. Anscheinend gibt es jetzt Ergebnisse, die ich jedoch noch nicht über Open Access finden konnte.
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
https://www.helios-gesundheit.de/kliniken/bad-saarow/unser-angebot/unsere-fachbereiche/long-covid/
I made a gofundme for my friend who has recently been diagnosed with: Ehlers Danlos Syndrome Type III, Postural Orthostatic Tachycardia Syndrome, and Median Arcuate Ligament Syndrome. She was terminated from her job, and is looking for a new job that she can do remotely and that caters to her physical limits. Consider helping her out, if you please! Any amount helps.
Xoxo
#POTS #MALS, #ehlersdanlos #gofundme #chronicillness #geneticdisorder #support #philadelphia
"Autoantibodies against receptors involved in the autonomous nervous system have been correlated with symptom severity in post-COVID-19 syndrome. Related symptoms may include postural orthostatic tachycardia, chest pain, and inappropriate sinus tachycardia"
I’m a disabled former receptionist turned history teacher who was made via “in vitro fertilization” and have multiple medical issues. #mctd #fibromyalgia #hypothyroidism #asthma #dsDNAautoantibodies #pots #mastcellactivationdisorder #degenerativediscdisease #SpinalStenosis I have been a pet sitter and a door dasher ever since I became sick. Im married and I like #vikings #startrek #dark #thewitcher #outlander #tool #mastodontheband #incubus #futurama #paranormalinvestigation #liberal
"Unsichtbarkeit von Long Covid: Einfach nur ausruhen
Long-Covid-Betroffene müssen noch immer für die Anerkennung ihrer Krankheit kämpfen. Nur wenige Spezialist*innen kennen sich gut aus."
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
600 strokes in 30 minutes, 15 minutes level 3, 14 minutes on level 4. 1 very loud minute on level 1 for cool down. (My machine doesn't like level 1. It grinds.) #ROW
Also did 40 minutes of real #pilates. I noticed that I can move through poses easier. I'm not flailing around trying to catch my breath & balance. It's nice.
Great #workout. My body is buzzing!!
#KickingTheShitOutOfPOTS #POTS #IWouldLikeAMassage #AndANicerRower lol
Feeling much better. 525 stroke #row, level 3, 30 minutes with #DarkHorseRowing on YT. 35 zone minutes on #fitbit
Ok, that 525 is a LIE because the guy from DHR, made me do these arm drills that effing killed me but they don't count because my machine only registers the times that the seat passes a sensor which it doesn't unless the legs are engaged.
In all seriousness, today felt like a proper #workout. 💪I felt strong & engaged & it was LOVELY.
Back at it. Am I still sore? Yep, but it's reasonable. I did 20 minutes of #rowing for 300 strokes, a nice and slow row at level 3. Did 20 minutes of gentle #pilates (#JessicaValant on YT, see previous toots for video link) and about 15 of #yoga stretching. 25 zone minutes on the #Fitbit. That's enough for today. Are you getting some movement in? What's working for you?
No #rowing yesterday or today. I'm sore. Hurting from head to toe. It feels DOMS on steroids. Jaw, shoulders, lower back, hips, knees and toes are screaming. I'm also exhausted. I know fighting through it is what everyone says to do, but I honestly can't. I did 20 minutes of gentle nighttime yoga yesterday & tonight I'll do the same. At least I won't be backsliding, right? Ugh. I wish I had more guidance on this. I'm going to smoke a bowl & reassess. #POTS #dysautonomia #KickingTheShitOutOfPOTS
A racing heart, dizziness upon standing, fatigue, nausea, inability to focus.
These hallmark symptoms of POTS are experienced by many people with Lyme.
READ MORE https://lnkd.in/g3h87aix #LymeDisease #POTS #chronicillness #chronicfatigue
500 strokes, completely by mistake. Happily rowing in one YouTube class, hit pause to answer a question from the Younger Kidlet & when I unpaused I switched me to another class. 🤷♀️ With a much higher stroke rate. My legs are jello. #stretching up next. 💪I'm too sore for #pilates tonight. (Sad panda.)
I know I'm going to need to really start focusing on cardio if I want to do this right, but I need this time to get there safely.
#KickingTheShitOutOfPOTS #disautonomia #POTS #ListenToYourBody
Did you use the Gupta Program?
What are your experiences?
Yesterday, I rested. I'm proud of myself for not only letting my body rest, but for also getting back to it with no excuses. I woke this morning with no hip pain so I did my #row for 365 strokes at level 3 for all but the last 2 minutes where I rowed as hard as I could at level 5. I'm going to feed the Younger Kidlet dinner, then find #pilates.
#KickingTheShitOutOfPOTS #POTS #dysautonomia #ExerciseIntolerance
Fantastic rundown of current theories on causes of and possible treatments for ME/CFS, past and present avenues of research, findings new and old, trials and clinical outcomes of various drug regimens to prevent and/or treat not only for improving symptoms but towards a cure. Gets into some medical specifics requiring more knowledge than I have, but is fascinating and fills me with hope.
https://cen.acs.org/biological-chemistry/infectious-disease/Long-COVID-hunt-causes-cures/101/i30
Another weird #POTS symptom - the last 3 or 4 days I've been having trouble swallowing. My whole #gi is pretty borked, it has been for many years and was the part of me that "broke"first after getting the original virus. But this trouble swallowing thing is unsettling. I'm not choking, but food- regardless of the size I'm swallowing is slow to move down.
"Long COVID: The hunt for causes and cures"
"With so many treatment candidates, researchers work to gain more clarity"
https://cen.acs.org/biological-chemistry/infectious-disease/Long-COVID-hunt-causes-cures/101/i30
"Die Coronavirus-Variante BA.2.86 ist laut RKI nun auch in Deutschland erstmals nachgewiesen worden. Sie wird bereits von der WHO beobachtet - und war zuvor in anderen Ländern aufgetreten."
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
https://www.tagesschau.de/inland/rki-corona-variante-nachgewiesen-100.html
I'm at my concert. I got in okay (had to take a tiny elevator). I got merch and refreshments just fine, but people keep crowding my walker. I know it's close quarters, but a little space would be nice. I can feel eyes on me and there are people behind me talking shit, but I'm glad I brought my rollator. My POTS is much improved by it. I only got slightly warm and my heart rate is topping out at 110 instead of 150-160.
I have been procrastinating on bleaching my hair and dyeing it again, because it takes a varying amount of effort that won't fully affect me until later.
I've had the box of bleach and the containers of dye (I'm going to mix a dark red and a turquoise to make something purple-ish) for months now. hopefully I can do it soon! I will need to make sure I have a relatively empty day following, in order to recover spoons.
We're going to pick up a #rowing machine from a family in town this afternoon, if it ever stops raining! I'm so freaking excited!! It looks in great shape from the photos & all they want is $25. (The husband said, "Just get it out of my house." Lol.) I used to love to row years ago so I'm hopeful that I can build up some stamina & strength. Maybe I'll start adding #StrengthTraining too. I'm done being sick. I'm done with #POTS. It's time to beat it into submission.
I've had a weirdly good few days and have been nesting like whoa. Put up some new lamps (high enough that the cat can't knock them over) and finally put some decorations on my bedroom wall (after living here for 8 years). Put up some shelves in the garage to replace the old grody ones that I've hated pretty much since a few months after I got them.
Each thing takes days, when it used to be a project that would take less than an hour. But I'm doing it. And I'm staying within my energy envelope.
It makes such a massive difference having just a few minutes more energy than I had before. I feel less like a useless slug. My bedroom actually feels kinda pleasant to be in, instead of just like a sick-room.
It's wild and wonderful. Like, I'm still far from functional, but it feels less like my life is just effectively over.
#MECFS #NEISVoid #POTS #MCAS
I wish I knew the question I want to ask about the experience of using a rollator. So I kinda feel like I need to come at it from all angles at once.
How do people decide to use one? What are the issues that lead to it being helpful? What's the experience of using it like? Does it feel like having a device that enforces your personal bubble? How do you deal with stairs?
#MobilityAid #POTS #Dysautonomia #MECFS #PWME #NEISVoid
The concert I'm going to tomorrow is general admission, no seating. I have POTS so that is an issue for me. I really want to see this concert though so I called the venue about disability seating. They said they had some seats in the back that were first come first serve. Not very comforting to hear as someone with a disability. I couldn't risk not having a seat so I finally bought a rollator. I'm a little nervous about bringing it since it's my first time with a mobility aid.
Jalan had COVID and mono this year. From whichever, she now apparently has (at least) #POTS post-viral, and quite a bit of lingering fatigue.
She's seen me through 10+ years of #MECFS (onset soon after we married) and my fight to learn how to ask for (and insist on) assistance and accommodations.
Before she got sick, she was trained in #EMDR (a technique using eye movements) as part of her new career as a therapist.
Most therapists move a pen or something back and forth across the client's field of view.
She can no longer do that without harming herself.
The device she could find to replace that, meeting the needs of control of speed, etc., is pricey. She is an unpaid intern. My ability to work (hourly) is falling fast.
She also fears the others at her practice seeing it as "fancy" for a newbie.
I'm proud of both myself *and* her that I convinced her to get it. Her career is going to last a lot longer than mine, and regardless neither of us wants her broken!
"Brain fog after Covid linked to blood clots - study
Blood clots in the brain or the lungs might explain some common symptoms of "long Covid", including brain fog and fatigue, a UK study suggests."
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
Article about a recently-identified subtype of depression with pronounced cognitive dysfunction. Guanfacine, a medication used to treat hyperadrenergic #POTS as well as #ADHD and hypertension, is under further investigation for the treatment of this subtype of depression. Might be of particular interest to those with #MECFS since we tend to struggle with depression, cognitive dysfunction, and POTS. @mecfs
https://med.stanford.edu/news/all-news/2023/06/depression-subtype.html
Aan het broeden op een kleine introductie voor de nieuwe vriendjes hier, maar ik ben echt te chaotisch om een beetje samenhangend te kunnen vertellen wie ik ben. Ik serveer jullie daarom een hashtagsoepje:
#TeamFriet
#HetZijnKruidnoten
#TeamAlledaags
#IkDoeMaarWat #EnSomsLuktDat
#LongCovid
#POTS
#migraine
#neurodivergent
#boardgames
#puzzles
#sudoku
#crochet
En iets met #Groen. Ik houd van groen, ik speel met groen, ik woon in het Groene Hart. Geitenwollen plantjesknuffelaar.
No workout today. I'm dealing with a natural supplement adjustment (not related to the #POTS) and it's been a bad pain day today. Tomorrow is a new day.
@LittleSteps2BXtra How terrible! 😠
I'm so angry that any patient with ME, anywhere in the world, is being told to try graded exercise when there's no evidence it helps and there is evidence that it could make a patient worse.
For anyone who is new to this topic here is an 8 page summary document - from the Science for ME forum - about the issues with the PACE trial:
If you have family members, friends, colleagues etc living with ME, POTS or Long Covid, you might benefit from reading this article on how it is living with these diseases.
https://www.abc.net.au/news/2023-09-09/why-mecfs-is-nothing-like-everyday-fatigue/102776070
#mecfs #MEawareness #pots #LC #LongCovid @mecfs
Ha. I'd consider this my first "real" #pilates class. It was hard but it felt good. I wasn't wearing compression (and I should have #POTS) so now my brain is feeling buzzy. I think I'll recover with my legs up on the wall before showering and getting to the office. I may need to shower sitting down.
I don't understand the implications of this. What's wrong with functional disorder, and what is de impact on diagnosis and healthcare?
"Functional disorder is an umbrella term for a group of recognisable medical conditions which are due to changes to the functioning of the systems of the body rather than due to a disease affecting the structure of the body."
Honestly, one of the best treatments for my symptoms has been this old hammock out on the deck. The way my weight is suspended, the gentle rocking, fresh air, birdies and squirrels to watch, a good book, and a reminder to slow down and relax.
What's been working for you all lately?
#LongCovid #MECFS #POTS #ChronicPain #Disability
#HammockTherapy
4/
Hannah Davis shared, "For me, I got sick in the first wave in NYC in March 2020... was eventually diagnosed with both myalgic encephalomyelitis and POTS." Hannah goes on to talk about the origins of the Patient Led Research Collaborative.
pots@a.gup.pe #pots
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers @covid @covid19
#COVIDー19 #COVID19 #COVID @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
7 weeks on Duloxetine. Massive improvements to mood, energy, and pain! I feel like I have my life back again. POTS flare-ups aren't any more common but are more severe when I do have them, with added vertigo. (yay)
HOWEVER sleep isn't great. I don't feel rested in the morning. I guess it's Restless Leg Syndrome, they move all night. I've actually worn a hole in our sheet! Hoping this improves.
All in all, worth it.
#Duloxetine #Cymbalta #EhlersDanlosSyndrome #EhlersDanlos #EDS #POTS #MCAS
Yesterday was a rest day. Today was 20 minutes of #Pilates with #JessicaValant then a full body stretch with her. I went through the videos before I started pilates, knowing I wanted to do both pilates and stretching. I thought- stretching is relaxing, I can totally do both! Lol. I got 1/2 way through and I swear it hurt more than the pilates. I got it done though! Just don't ask me to walk upstairs. #POTS #ExerciseIntollerance #LegsCirclesOfDeath
https://youtu.be/ljJ1ShuzI5o?feature=shared
Today's #yoga was with Kassandra. A couple years ago I decided I *really* wanted to "get good" at yoga (this is where you say- wth, Heidi. That's not the point of yoga... I know.) Anyways, I have bad wrists from knitting & I've had multiple ab surgeries, not to mention the exercise intolerance from #POTS but I dove in & it didn't last. 🤣 Kassandra was my preferred teacher. Today's session was gentle. I'm stiff from yesterday & sitting all day at work.
Il fait re-froid, c'est le retour du #GateauEnTranches ou comment faire un gâteau quand on peut tenir debout que 5 minutes à la fois (et pas trop souvent) à cause du #POTS. C'est parti pour le Chocolato d' @Owi , aujourd'hui j'ai mesuré les ingrédients secs :dragn_cool:
#MardiPatisserie
That Stat News article didn't mention ME/CFS.
But I just noticed that one of the links in the first paragraph (on the word debilitating) goes to an article from January about a woman with Long Covid who also has an ME/CFS diagnosis:
‘I want people to see us’: A writer gives voice to long Covid and mothering from bed
https://www.statnews.com/2023/01/09/living-with-long-covid-writer-kristin-houlihan/
"Steigende Corona Zahlen – was bedeutet das für uns?"
#Corona #Coronavirus #COVID19 #LongCovid #PostCovid #MECFS #POTS
https://www.swr.de/wissen/corona-rollt-die-neue-welle-an-100.html
Probably I should postpone my consult with the dietician, because at the moment there is to much to learn about?
Are there people with POTS who have made adaptations to their food? Which helped you?
I have already started an intake with an plantbased dietician because of higher blood pressure. But now that seems to be because of / in combination with POTS.
It could make my goals different. And I want to know and share more with the dietician before the planned videocall from 1,5 hour - then only based on information before I had this diagnosis.
I promised myself that I'd do 20 minutes of exercise today. The last fucking thing I feel like doing is 20 minutes of anything resembling exercise. I swear I can feel the #POTS flare up getting worse as my day goes on. (Someone tell me to stop bitching & get the yoga mat out.)
Moving slow & shaky this morning and I can't seem to shake off the morning crankies. I hope the food bank is gentle with me today. Feeling fragile. #POTS
@Tooden @hosford42 @actuallyautistic @neurodiversity #ADHD with #POTS (another aspect of neurodiversity). Could never match my heart rate because it’s all over the place, so became a bass player.
@actuallyautistic anyone with Hyperadrenergic #POTS experienced a worsening with #SNRI antidepressants? I was put on Brintillix last year, and after that, my presyncopes went from a few times a week, to every single time I stood up. I finally convinced my psychiatrist to let me go off them last month, despite her saying "it's fine as long as you don't actually pass out", but the symptoms haven't gone back to what it was before. :(
Are there any #GPs in #Melbourne #Australia who:
A) Like complex patients?
B) Are still taking on complex patients? All I‘ve tried are full.
I’ve tried asking everywhere. Hundreds. I’m so tired. 😩
#MedMastodon
#ChronicIllness
#SevereME #PwME #MECFS
#LongCovid #POTS #Hypothyroidism
Now they’re just “infections.” But you didn’t get that last shot just a few weeks ago—it’s probably been many months. The antibodies are gone. What you have is protection against getting very acutely sick or dying, from T-cell immunity.
Well, that’s all very nice, but how much does it protect against, say, #LongCovid or #POTS or the subtle barely noticeable cognitive decline that nobody wants to admit they have?
Not much. Around 50% tops for Long Covid.
Oh, and guess what—nobody is masking.
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
It's so freaking hot here. My new hack is to put my wet clothing on directly out of the washer and sit in front of a fan. I have no regrets.
@blogdiva Yep. So many years of neglect. No treatments due to vastly underfunded research.
Many viruses can trigger long term illness, COVID, flu, SARS, EBV, etc.
US government ignored the warnings from ME/CFS patients and patient advocacy groups that the pandemic was going to trigger many more cases of ME/CFS, POTS, etc. Several studies show that roughly half of Long Covid cases meet ME/CFS diagnostic criteria.
My body is absolutely a temple!
But it’s not kind you’re thinking of.
It’s the kind with all the traps from the opening of an Indiana Jones movie.
#ChronicIllness #chronic #disabled #disability #POTS #dysautonomia
Are you managing to eat in the heat? I haven't been, but I did remember something great from my backcountry trips - trail mix! Think this will be a new go to when I'm dealing with bad POTS symptoms in the heat.
#Introduction time at the newly-rebranded #FirefishLGBT server! 🎉
(you can read this on my profile too, I keep tweaking it here and there when I remember to add or change a thing)
--
Thinker of profound thoughts & also shitposts.
#Trans #Non-Binary #GenderQueer. #Neurodivergent #Writer. #Disabled with #ChronicIllness #MCAS #EDS #POTS.
I write about #QueerIdentity, #Death, #Hope, #Praxis, & #SongLyrics at the Infinite at https://nixkelley.com. My inspiration to write usually comes when songs and poetry remind me what is true.
I currently live on Anishinaabeg land in what is called Michigan, in the lower half of the mitten, between the Great Lakes.
I am a trained #DeathDoula. I engage in #DeathWork and #GriefWork for my community, using a reciprocity model rather than a capitalist structure. I write Paths That Lead Home, essays for the dying and their loved ones. You can sign up for it at https://everonandon.com, my deathwork website.
I'm currently training in a pre-Gardnerian Celtic oathbound lineaged oral mystery tradition of #BritishTraditionalWitchcraft. I serve the community wherever I live (and wherever I can travel digitally), as a layperson for now and as clergy once I reach an appropriate level of training.
I am a #pagan #polytheist and #animist. I live in an intentional community with my #ChosenFamily, and we are learning how to do this as we go, taking inspiration from indigenous Celtic tribe-based communal living.
I'm a #gamer. My current rotation of PC games is #IXION, #MaskOfTheRose, #OxygenNotIncluded, & #LOTRO. I have a deep love for #DeathStranding #Fallout4 #ESO #Skyrim & #Frostpunk. On the Switch, I'm playing #CozyGrove #OregonTrail & #NotTonight.
I'm a #knitter & my Ravelry profile is https://ravelry.com/people/nixkelley
I am a #polyam person and I currently have two partners. I watch queer media whenever possible. I love ridiculous #paranormal media. My favorite kind of humor is dark.
#AltText is the rule: my avatar is a selfie I took, framing my face and one of my tattooed arms. I have pale skin and in this photo my hair is dark.
Day three on Duloxetine. Lots of shakes and tremors, some nausea, very low appetite. No difference in mood yet, but mild increase in anxiety. POTS symptoms were a bit worse on day one but it passed quickly. Almost no EDS pain today, which is a very welcome change. Absolutely exhausted. If I'm still this tired after a week I'll try taking it at night instead of the morning. It's no picnic but I'm staying the course.
#POTS #EDS #MCAS #MECFS #LongCovid #Fibromyalgia #Duloxetine #Cymbalta
Sharing in the interest of rejecting the stigma around these things... I've added Duloxetine (Cymbalta) to the list of meds I take every day. 💊
I am hopeful it will help with pain, but even more hopeful that it will boost my mental well-being, raise the bar of what I can accomplish in a day, and keep my spirits up while on this wild health journey.
#POTS #EDS #MCAS #MECFS #LongCovid #Fibromyalgia #Duloxetine #Cymbalta
Where are the #NEISvoid people?
#ChronicPain #ChronicIllness
#MECFS #LongCovid #Migraine #Endometriosis #Dysautonomia #POTS #Disability #SevereME #PwME #Spoonie
Say hi 👋🏻
(I was hoping we’d build a #neisvoid / chronic illness-type place here.)
