PACE This is your sign to pace 😝
Crash Day with a #crashcat 😻 #dizziness #vertigo #migraine #vestibularmigraine #mecfs #chronicillness #disability #invisibledisability #disabilityawareness #migraineawareness #cgrpinhibitor #cgrpmeds #chronicfatiguesyndrome #pem #postexertionalmalaise
Thank you to our member @mccullough.aileen for doing this interview with @ulsterherald_tyroneherald. We know how much precious energy this uses so we appreciate it very much. 🙏🏼 Your story & words are very powerful & hope that it raises the awareness it deserves. 🩵💜 #meawareness #meawarenessmonth #MyalgicEncephalomyelitis #DiscoverME #GlobalVoiceForME #TeachMETreatME #postexertionalmalaise #fibromyalgia #pots
Good Morning Good Morning Happy Saturday. Hope everyone is ok and pain free as possible! I am absolutely wiped out! As soon as I stopped for the weekend the pain and fatigue has hit me like a ton of bricks. The good old tell tale ME sore throat has made an appearance so once we've been to see my parents I will be back in bed/on the sofa. #SaturdayVibes #Saturday #SaturdayMood #Weekend #PostExertionalMalaise #PEM #MECFS #CFSME #Endometriosis #Fibromyalgia #Fibro #ChronicFatigueSyndrome #VSGUK #VSGSupport #WLSSuport #WLS #wlscommunity #BariatricSurgery #BariatricSurgerySupport #VSG #cfs #GastricSleeve #WeightLossSurgery #DiscoverUnder5k #MyalgicEncephalomyelitis #Spoonie #chronicpain
@chronicpaincastle #MeCfsAwarenessMonth #postexertionalmalaise #PEM #MyalgicEncephalomelitisMonth #myalgicencephalomyelitis #ChronicFatigueSyndrome #ChronicFatigueSyndromeAwareness #MillionsMissing #GoBlue #MeCfsWarrior #CfsMeAwarenessMonth #ChronicIllness #ChronicallyIll #ImmuneDysfunction #neuroimmunedysfunction #CfsMe #MeCfs #Cfids #chronicfatigueimmunedysfunctionsyndrome #ChronicFatigueImmuneDysfunction #Immunity #Health #Awareness
Enrollment for the next Career & Chronic Illness Workshop is open! This 4-session course is spread out over 8 weeks and focuses on helping you connect with others with chronic illness, dig into how your career might need to change in this season, and leave you inspired to move forward within your capacity so you can focus on thriving, not just surviving. $400 is a steal as you not only get the workshop’s top-notch content, it includes 2 individual coaching sessions valued at $240. Sign up today - spots are limited to keep the workshop a small, safe space for everyone to learn and contribute.❤️ #longcovidrecovery #longcovid #chronicillnessawareness #pots #mecfs #spoonie #longcovidsymptoms #chronicfatigue #healthcare #chronicpain #eds #pem #postexertionalmalaise #careercoach #career #lifecoach #coach #coaching
Échelle de l'impact de la sévérité de l'EM sur la vie des patients. #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #meawareness #postexertionalmalaise #malaiseposteffort #MPE #12 mai #may12 #invisibleillnessawareness #maladiechronique #chronicillness #millionmissing #meaction #notjustfatigue #espoir #hope
ME severity impact on patients life scale. #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #meawareness #postexertionalmalaise #malaiseposteffort #MPE #12mai #may12 #invisibleillnessawareness #maladiechronique #chronicillness #millionmissing #meaction #notjustfatigue #espoir #hope
I'm officially back to moderate ME after four years of being severe and very severe!! This is a good day 🥳🎊🥹 --- #mecfs #mecfsawareness #myalgicencephalomyelitis #postexertionalmalaise #spoonielife #pem #housebound #millionsmissing #meawareness #endmecfs #pwme #severeme #spoonie #chronicillness #chronicfatiguesyndrome #millionsmissingdenmark
This time of year can start to get busy and it can be all too easy to put your own health and goals on the back burner. But here's the thing. If you want to be feeling your best for your summer trip, or for your friend's fall wedding, the time to start learning how to manage your symptoms and improve your activity capacity is now! Change and improvement with POTS or LC takes time and consistency. DM me "COACH" if you want to know how 1:1 coaching can help you gain capacity and move towards your goals!
🚀 Wie wir Long COVID & ME/CFS behandeln möchten vs. wie es wirklich ist! 🌟 🔮 Wunschdenken: Eine magische Pille, die alles heilt. 👩⚕️💊 Realität: Eine umfassende und vielschichtige Behandlung ist notwendig. Die Behandlung von Long COVID, Post-Vac und ME/CFS erfordert einen multidisziplinären Ansatz: 1️⃣ Medikamente/Mikronährstoffe: Zur kausalen und symptomatischen Therapie 2️⃣ Apparative Methoden: IHHT, HBOT, Stellatus-Blockade... 3️⃣ Physio-/Ergotherapie, Pacing: Zur Unterstützung der körperlichen Funktionsfähigkeit und Alltagsbewältigung. 4️⃣ Ernährung: Angepasste Diäten, die Entzündungen reduzieren und eine Dysbiose behandeln. 5️⃣ Physikalische Maßnahmen: Kryotherapie oder Hyperthermietherapie 6️⃣ Nervensystemregulation: Techniken wie Biofeedback oder N. Vagus-Stimulation zur Regulierung der autonomen Funktionen. und und und.... 🧠💪 Es gibt keine Einheitslösung. Jeder Patient benötigt eine individuell angepasste Therapie, die auf seine spezifischen Bedürfnisse und Symptome abgestimmt ist. 📢 Lasst uns weiterhin aufklären und die besten Behandlungsmöglichkeiten erforschen. Gemeinsam können wir den Weg zur Besserung unterstützen! #LongCOVID #MECFS #ChronicIllness #postcovid #covid #corona #covid_19 #immunsystem #immunschwäche #infektanfälligkeit #immunsystemstärken #postcovid19 #postvac #mecfsawareness #mecfswarrior #fatigue #chronicfatigue #postexertionalmalaise #pots #potssyndrome #brainfog #dysautonomie #dysregulation #herzrasen #erschöpfung #pem
Better care for chronic conditions and let's end medical gaslighting now. We firmly stand behind this, and the reality is that these kind of changes aren't going to happen overnight. We recognize that you need help now and can't wait for a system to change. Come check out a place where your nervous system feels safe and healing happens. Comment 'EEP' below if you would like me to shoot over an application to join the group. . . . . . . #longcovid #longcovid19 #longcovidawareness #covidfatigue #covidsurvivors #chronicillness #longhaulerstrong #longhauler #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potsie #dysautonomia #dysautonomiaawareness #postviralsyndrome #postviralfatigue #postviralfatiguerecovery #invisibleillness #invisibleillnessawareness #butyoudontlooksick #orthostaticintolerance #exerciseintolerance #longhaulers #pem #postexertionalmalaise
Post-exertional malaise: the struggle is real. #StillLifeWithCat #Cats #CatsOfInstagram #LongCovid #PostExertionalMalaise
Assistive device use for dynamic disabilities and energy limiting conditions can be confusing to people without personal experience. It is hard to conceptualize limited energy when you’ve never experienced it. While I know that comparing your energy to a phone battery in no way fully captures the experience, it does conceptualize it in a way that allows others to understand a little bit more. What has been your experience understanding or explaining this to others? Share below!
✨Life With M.E Is..✨ It’s been a while since I did a Life With #myalgicencephalomyelitis Is.. post and now felt like a good time to post this one. You all know I’m dealing with consequences from #bluesunday2024 my birthday, extra posting for #meawareness month, writing out my personal M.E story, doctors appointments etc. When I say consequences I mean PEM - #postexertionalmalaise - #brainfog increased #pain and #fatigue painsomnia, honestly the list goes on! #severeme ,and indeed other severity levels, is a lot to cope with when we’re at baseline levels so it’s even harder when we’ve done any type of exertion. This is our reality when it comes to living with M.E There will be consequences to absolutely anything we do. Sometimes it’s worth it and sometimes it’s not. Sometimes we’re expecting it and other times it hits us without warning. I find it easier when I’m expecting it and can prepare but that doesn’t mean that it is easy. Wishing anyone dealing with this a quick return to baseline and some relief soon. 🩵💙love and positive vibes🩵💙 #myalgicencephalomyelitisawareness #myalgice #meawareness #mecfs #mecfsawareness #mecfswarrior #mecfsfighter #mecfslife #millionsmissing #chronicillnessandme #chronicillnessawareness #chronicillnesslife #chronicillnesscommunity #chronicillnessadvocate #disabled #disabledlife #disabledlivesmatter #disabledlookslikeme #disability #invisibleillness #invisibledisability #stoprestpace #pacing
#nomorewordsneeded #mecfs #pem #postexertionalmalaise #fatigue #mecfsawareness
Ik zou willen dat ik kon zeggen dat ik ermee gestopt ben omdat ik een scheit heb aan de conventies van hoe een vrouw eruit hoort te zien. Maar de waarheid is dat ik ermee gestopt ben omdat ik er simpelweg de energie niet voor heb. Ik zou willen dat ik kon zeggen dat ik ermee gestopt ben omdat ik het mooier vind. Maar de waarheid is dat ik het niet mooier vind. De waarheid is dat ik er nog steeds niet aan gewend ben na een jaar. In de winter kon het me niet zo storen, want toen was het toch bedekt, maar nu ik het weer zo duidelijk zie is het anders. Ik hou niet van mijn beenhaar dat loopt van mijn tenen tot mijn liezen. Ik hou niet van mijn welig tierende bush. Ik hou niet van het pak shag onder mijn oksels, maar ik zou willen dat het wel zo was. Dat ik een van die vrouwen was die vol trots met haar lichaams haar loopt, maar helaas dat ben ik niet. Ik weet niet of dat komt door een aangeleerd beeld of gewoon persoonlijke smaak, want bij anderen vind ik er eigenlijk niet zoveel van. Alleen bij mijzelf stoort het me. Voel ik toch een stukje schaamte, omdat ik het niet mooi vind. Omdat ik het lelijk vind. En juist daarom deel ik dit. Deel ik deze foto's. Want ik zou me er niet voor moeten schamen. Want uiteindelijk hoort dit allemaal toch gewoon bij mij. Hoort het bij de vele gevolgen van mijn ziekte. En hoewel er veel ergeren gevolgens zijn, zoals vrijwel geen mensen kunnen zien en niet meer buiten komen is dit er toch een waar ik met dit mooie weer dagelijks mee geconfronteerd wordt. Al is het voordeel dat vrijwel niemand het ziet wel dat ik het iets makkelijker los kan laten. Zo heb elk nadeel toch weer zijn voordeel 😜
& POTS Medicatie Sinds nov ‘23 krijg ik medicatie om mijn POTS symptomen iets te verminderen (icm leefregels). Met als doel minder snel in PEM belanden zodat mijn lichaam hopelijk de ruimte krijgt om eindelijk in herstel te komen… In principe kan iedere huisarts deze medicatie voorschrijven, maar omdat het niet in de richtlijnen staat als medicatie voor POTS (want ook voor deze onzichtbare ziekte is nauwelijks aandacht en/of onderzoek) ‘durven’ ze het vaak niet en zul je een arts moeten vinden die er enigszins verstand van heeft (bijv op www.ditispots.org). Daarna is het echt uitproberen welke (combinatie van) medicijnen positief effect hebben*. Dit is voor iedereen anders! Ik begon met Ivabradine, kreeg er Dexamfetamine en Fludrocortison bij. Daarna stopte ik met Fludrocortison ivm atypische bijwerkingen. Startte met Mestinon (en moest daarom stoppen met Dexamfetamine). Dus nu Ivabradine en Mestinon. 💊Ivabradine 4x 2,5mg (hartslag verlager, alternatief voor bètablokkers zoals propranolol, relatief weinig bijwerkingen, ook geschikt bij lage bloeddruk en astma). 👍Verbetering: rusthartslag is lager, dus duurt langer voordat de hartslag over mijn anaerobe drempel gaat, dus minder snel PEM. Duur van PEM verkort van 6 weken naar 4 weken. 👎Bijwerkingen: geen 💊 Pyridostigmine (Mestinon) 3x 30mg (stimuleert het parasympathische zenuwstelsel, betere signaaloverdracht van zenuwen naar spieren). 👍Verbetering: voel me meer mijzelf, energieker, minder slap lichaam. 👎Bijwerkingen: eerste 2 wk diaree, tijdje maagkrampen (verdwenen door ipv voor slapen tijdens diner in te nemen) 💊 Fludrocortison (Fludrace) 1x 62,5 microgram (vocht vasthouden om bloedvolume te verhogen). 👍 Werking: hartslag -5, veel stabieler: minder snel PEM, minder diepe PEM. 👎 Bijwerkingen: veel plassen, opgeblazen gevoel, droge ogen/neus/mond). 💊 Dexamfetamine (Tentin) 1x 1,25mg (ADHD medicatie, samentrekken vaten) 👍 Verbetering: vrolijker, betere slaap, minder brainfog, minimaal meer energie. 👎 Bijwerkingen: geen (let op: kan valse energie geven!) *Let op, de dosering, werking en bijwerkingen zijn zeer persoonlijk! Neem medicatie altijd in overleg met een arts.
Rishikesh...🫰✨🏊 . #rishikesh #woterpool #newpost #postexertionalmalaise #explorepage #trendingshorts♥️♥️♥️ #viralpost #mountain #
Went on a trip to the #sanjuanislands this weekend with my outlander cowl and new cane with a chair. They proved very useful. More pics to come! I am paying for the weekend now with the worst #mecfs crash I’ve had in months. #postexertionalmalaise #longcovid Traveling is different now and I’m still getting used to it. Also, caption this expression for me will you? I was trying to look cool but instead it looks like someone just took my parking spot
#MEAwarenessHour Wie kann ich anderen PEM* erklären? (3⃣) ✅❌ 𝗔𝗯𝘀𝘁𝗶𝗺𝗺𝘂𝗻𝗴 𝗮𝗺 𝗘𝗻𝗱𝗲 𝗱𝗲𝘀 𝗕𝗲𝗶𝘁𝗿𝗮𝗴𝗲𝘀 Diesmal geht es um einen Vergleich mit Treibsand für PEM und "Pacing". Siehe Beitragsbilder. Alternativ-Text vorhanden. 👉 Teil 1: Vergleich mit einer Reifenpanne, geteilt am 27. März 2024. 👉 Teil 2: Vergleich mit Giftbohnen, geteilt am 24. April 2024. 👉 Im Story Hightlight "MEAH" findest du diese Beiträge und viele weitere hilfreiche Infos rund um ME/CFS, die wir regelmäßig zur ME Awareness Stunde teilen. Ebenfalls empfehlenswert ist das Story-Hightlight "Hilfreiches" 📌 Speicher dir die Beiträge gerne ab, damit du sie zur Hand hast, wenn du das nächste Mal versuchst, einer nicht betroffenen Person PEM zu erklären :) 🤝 Schließ dich uns nächste Woche Mittwoch 21-22 Uhr der MEAH an. Für mehr ME/CFS Aufklärung - ganz besonders in dieser einen Stunde in der Woche. 👉 Folge uns für mehr Infos, kostenlose Veranstaltungen und Gemeinschaft. Für mehr gemeinsam statt einsam --> @mecfs.space Community !B Alternativtext vorhanden ✅❌ 𝗔𝗯𝘀𝘁𝗶𝗺𝗺𝘂𝗻𝗴: Wie findest du den Vergleich?
6 years. This is the average time to diagnosis for individuals with POTS. It literally takes less than 30 minutes to go through some simple screening. No fancy equipment needed. But 1st, let's talk about why this is important to Long COVID. POTS (postural orthostatic tachycardia syndrome) is a type of autonomic dysfunction. This means that it is a problem in which the nervous system goes haywire, and all the things that are controlled automatically in your body like temperature regulation, blood pressure, heart rate, breathing, sleep cycles, and more get interrupted. POTS has multiple causes including pregnancy, trauma (physical or emotional), prolonged bed rest, illness, surgery, or a virus. That's right! A virus can cause POTS. COVID is one of those viruses. More than 2/3 of all COVID cases have a component of POTS, so it is soooooooooo important that people with Long COVID are screened for POTS. Physical therapists can do this. If you are a physio, listen up. If you are someone with Long COVID, show this to your physio. Here's how to screen for POTS. 1. Malmo POTS Symptom Score 2. NASA Lean Test / Active Stand Test 3. COMPASS - 31 The Malmo is a validated questionnaire with cutoffs that can be used to help identify someone with POTS. The NASA Lean or Active Stand test is a simple and more accurate way than a tilt table test to assess the neurocardiogenic response to position change. This can identify POTS, IST, orthostatic hypotension and more. The COMPASS-31 will help identify generalized autonomic dysfunction including POTS. All of these are free and readily available tools. We as physios have the power to cut people's time to a POTS diagnosis down by years. I'm on a mission to help people have better care during Long COVID. To learn more about this and how to manage somebody with Long COVID, join the waitlist for my course. Type "LC PT" in the comments to join the waitlist.
POTS and dysautonomia like routines. Routines are also hard to establish and maintain. Especially when you have changing symptoms and circumstances. I’ve had a lot of discussions lately with clients about routines and working through how to establish them. But why are they so important in POTS and dysautonomia? Our body likes consistency and knowing what to expect. With dysautonomia, our system doesn’t know how to appropriately respond to things. Standing up can cause your heart rate to take off on a sprint, or your blood to pool because your veins didn’t constrict. Exercising too much or resting too little can cause symptoms to flare up for days. A good routine helps bring consistency and stability so that your body can better respond to changes in your activity and environment. But the same routine doesn’t work for everyone! In the last week I've worked with clients to establish morning and evening routines, figure out where in the day breathwork and rest breaks will be most effective, and how to use movement strategically. With every person we’ve been able to create an action plan that is unique to them and their needs. And they get to have me right there with them to keep them accountable and make further adjustments! Having support, guidance, and an outside perspective to help problem solve can make a big difference. My coaching is about so much more than exercise training. It's about helping you learn the tools to stabilize and progress yourself! Do you need help with routines? Exercise? Pacing? My 1:1 virtual coaching can help! All while providing you with individualized support throughout the whole process. DM me "ROUTINE" to get started!
🔵🔵 BREAKING THE CYCLE 🔵🔵 Hands up if this cycle is something you've found yourself caught in? *Raises own hand* The Boom or Bust cycle is just 1 of many challenges we can face as chronically fabulous business owners & MAN does it take some cracking! Even now I find myself in the middle of a flare, although it couldn't be avoided (due to a physically demanding weekend), I still feel frustrated that I'm here. But here's the thing - it's no longer my daily challenge. I have made adjustments & such that the Boom or Bust cycle is a rare visitor, & it is a BIG relief to have finally broken out the cycle! Are you still finding your way through? Or do you have your routine down to a T now? Share any tips you have to help others still trying to find the balance! Bxx #autoimmunedisease #invisibleillness #spoonie #chronicpain #mentalhealth #chronicillnessawareness #chronicfatigue #spoonielife #fibromyalgia #disability #smallbusinessowneruk #SmallBusinessSuccess #shoplocaluk #boomorbustcycle #boomorbust #overexertion #postexertionalmalaise #breakthecycle #smallbusinesstips #smallbusinessadvice
I haven’t shared tidbits of our trip to visit Rob’s parents in Bluffton, SC yet (except for in the moment in my stories). Here’s part 1, from when we went to Savannah, Georgia for the day. It was my 3rd time (but Rob’s 1st) in Savannah, and that beautiful historic city never disappoints. How did I manage it? With some careful planning and alterations. 1. We were in Bluffton for 10 days, so we chose the coolest day (79° compared to high 80s or 90s) to go to Savannah. 2. Typically when I visit a big city, I like doing the evening ghost tours. This has multiple benefits for me— A- it’s a history tour as well, and you learn so many interesting facts you wouldn’t normally learn. B- anyone who knows me well knows I love all things paranormal, especially ghosts. C- taking the tour at night means cooler weather. It makes walking around a city much more doable for those of us who are held back by our heat intolerance. 3. We didn’t do a ghost tour this time (I’ve already done one there), but we did do one of the Hop On, Hop Off trolly tours. This meant we didn’t have to do too much walking, and could just ride the bus to whichever location we wanted to spend more time. 4. Nylon compression socks. These were a lifesaver for me, as I get bad edema from walking and heat. The nylon fabric made them breathable, and I wore a maxi skirt which hid them, so no one but me knew I was wearing them. If you want the exact ones I used, DM me and I’ll share the link! I’ll do share in stories again (and make a highlight with the link for future use). 5. Buy allll the drinks. I easily dehydrate, and I always have a water on me. But warm water just doesn’t do it. Next time I’ll remember to bring my Yeti or Simply Modern tumbler, but I forgot to pack it on the trip. 6. Don’t do too much if you can avoid it. We got there around 9:30am, and left around 5:30pm. Too long of a day is more than I can handle. As it is, when we got back to Rob’s parents’ house, I laid in bed the rest of the night feeling paralyzed from fatigue. Other things I could’ve used: a neck fan and/or a handheld electric fan. If it was hotter, I would’ve needed one for sure.
Chronic Fatigue Syndrome. Scientific name is Myalgic Encephalomyelitis, which makes most people's eyes glaze over. The Hallmark of #mecfs is the debilitating exhaustion and Post Exertion Malaise, or #pem As I am on day 7 of an unexpected flare, I'd like to talk a bit about this "fatigue" I experience. Have your legs ever just stopped communicating with your brain? And they have to be dragged around like a stump or rotten log. It can feel like you've strapped cinder blocks to your ankles and are going up a stairwell. Imagine your worst hangover. The bright lights, sensitivity to sounds, nausea, how disconnected you feel from your body. That's a good day for a lot of us. Some people progress. Others find a baseline and are lucky enough to push it. Some people were left to the wind for so long they have lost everything they used to be. It's so complicated, and no 2 people experience it the same. Last week my cat had a vet appointment. We waited in the room for his blood work to clear before specific vaccinations to keep him safe, as I am settled into the foster and rescue life and have no intentions of ever stopping. But i digress. The 40 minute wait under bright fluorescent lighting, with endless auditory sensories overwhelming me. I didn't think it would take me back to secondary IBS being set off. To sleeping every afternoon. To keeping a lined basket by the bed side. Oof. As I grow this account I'm going to share how lucky I am to have found a baseline after a lifetime of uncontrolled symptoms and gaslighting. But right now I can feel electric pulses in my bones, and I need to be in a dark room for a bit. Hope your day slays. C Mwah. #flareup #fibromyalgiaawareness #myalgicencephalomyelitisawareness #postexertionalmalaise #invisibleillness #spooniethings #disabilityawareness
I'm not normally very good at crafts, but I think these aren't too bad. At the therapy group this week ( weekly group for chronic illnesses warriors to find some calm ,it's also about taking care of our mental health), we tried our hands at Macrame. Funny thing of me, I have OCD and one of my fixations is knots,so this was like a cat with a string for me, the repetitive nature meant I picked it up quick and could unravel mistake super quick. It also itched that part of my brain, too. ( officially diagnosed in 2005 by a psychiatrist 👍🏻) . We aren't meeting next week due to Bank Holiday, but haha don't be surprised if your gifts are hand-made this year for Christmas, lol #disabled #cfsme #PEM #fibromyalgia #fibrowarrior #myalgicencephalomyelitisawareness #disabilityawareness #disabilitydiscrimination #bluebadge #afib #disabledgoth #chronicfatiguesyndrome #notalldisabilitiesarevisible #chronicillnesswarrior #wearenotatrend #postexertionalmalaise #notafakerhun #postexertionalsymptomexacerbation #disabilityadvocate #disabilityrights
Teil 2 “33 Monate” Regeln brechen! Natürlich!!! Tatsächlich bin ich mit meinem geplanten Kurs schon sehr weit gekommen … aber irgendwo hat es gehakt. Abgesehen davon, dasss es mir zu schlecht ging. Es hat gehakt an den Regeln, die ich einhalten wollte, weil ich sie respektiere. ABER … so sinnvoll sie auch sind, sie funktionieren nicht für das, was ich vorhabe. Darum geht es: Ich war schon Reiki Master, bevor ich krank wurde. Und auch wenn Reiki mich weder von Post Vac noch von ME/CFS kuriert hat, gibt es nichts, was mir in den letzten 33 Monaten mehr geholfen hätte. Ich habe weder Depressionen noch Angstzustände, Panikattacken oder ein Diagnosetrauma und der Weltuntergang letzte Woche hat nur einen halben Tag gedauert, bevor ich mich wieder gefangen habe. Ich bin selten unglücklich. Ich kann wieder normal schlafen, auch wenn es ein mühsamer Weg war. Das verdanke ich in erster Linie meiner konsequenten Reiki Praxis. Wobei ich auch festgestellt habe, dass Reiki bei so seltsamen Krankheiten alleine nicht ausreicht und so ist nach und nach noch mehr dazugekommen. Z. B. die 7 Säulen multidimensionaler Selbstheilung, die kurz vor einer besonders schlimmen Crash-Zeit einfach so aus meinem Kopf gefallen kamen. Ich hatte das Glück, diese Basis zu haben, BEVOR ich krank geworden bin. Nur so konnte ich weiter lernen, mit halb funktionierendem Hirn und Belastungsintoleranz. Nachdem sich mein Brainfog vor ein paar Monaten verzogen hat, wusste ich, was ich machen will: Reizarme Reiki Kurse für die Menschen, die keine machen können, weil sie zu krank sind. Weil sie nicht vor Ort sein können oder 3 Stunden in einem Zoom Raum schlicht unmöglich sind. Weil Reiki Kurse in De zu teuer sind. Das war der Gedanke. Und der war immer noch zu brav. Früher hat man bei schweren, langwierigen Krankheiten erst die Angehörigen in Reiki ausgebildet und wenn die Kranken sich etwas stabilisiert hatten, auch sie selbst eingestimmt. Das möchte ich gerne wieder möglich machen. Also los gehts mit Regeln brechen! Wenn dich das interessiert, kommentiere “Reiki” und ich nehme dich mit in meine Freunde-Liste für nicht öffentliche Stories zu dem Thema.
Letzte Woche kam der Brief, der verkündet hat, dass das Nahtlosigkeits-Arbeitslosengeld in 4 Wochen endet. Das wäre der richtige Zeitpunkt für Rente oder Bürgergeld. Nur - ich habe nichts davon beantragt. Mit dem Brief in der Hand war mir völlig klar, dass ich genau das aber jetzt WIRKLICH tun muss. Denn der Versuch stattdessen vom Bett aus zu arbeiten, ist vor ein paar Wochen gescheitert, als irgendwelche Kack-Wechseljahres-Hormonumstellungen mich vom Schweregrad Mitte-moderat wieder zurück auf das obere Ende moderat an die Grenze zu schwer geschubst haben … nachdem es ein Jahr gedauert hatte vom oberen Ende überhaupt wieder in die Mitte zu kommen. Und zum ersten Mal in den 33 Monaten, die ich nun schon krank bin, bin ich in Panik geraten. Nicht, weil ich gar kein Geld mehr habe, was schlimm genug ist, sondern weil es kaum etwas gibt, das mich so sehr entsetzt wie der Gedanke an Gespräche mit Gutachtern. Was im übrigen auch der Grund war, warum ich bisher weder einen Pflegegrad noch Erwerbsminderungsrente beantragt habe. Ich bin gut im Pacing, ich habe mich noch NIE selbst gecrasht. Was mich aber IMMER gecrasht hat, waren zu lange Gespräche mit Ärzten, unabhängig davon wie nett sie waren. Wenn sie keine Ahnung von ME/CFS haben, konnte mein Gehirn die Art von Gesprächsführung nicht verarbeiten. Nur durch solche Gespräche hat mein Schweregrad gewechselt von mild zu moderat, zu Mitte moderat und schließlich ans obere Ende von moderat. Und jetzt soll ich riskieren, dass mich das nächste Gespräch in schwere ME schiebt?! Ich habe es nicht allzu gut aufgenommen. Einen halben Tag lang habe ich geheult, als würde die Welt untergehen. Aber hey, mein Kopf ist einfach nicht auf Weltuntergang konditioniert. Gegen Mittag habe ich mich selbst aus dem Bett und in den Garten geschubst. Dass ich keine Sonne mehr vertrage, erschien mir in dem Moment nicht so wichtig. Während ich überlegt habe, wie ich vielleicht DOCH noch meine Arbeit auf die Reihe kriegen, DOCH noch meinen ersten Kurs fertigmachen kann, sagte eine Stimme in meinem Kopf: “Mach doch einfach das, was du am besten kannst.” Äh … was …? Die Antwort war: “Regeln brechen.” … weiter im nächsten Post.
Who knew your nose could do that for you? The role of nasal breathing on hydration is something that I think many people overlook, but when every bit of fluid counts, it can have a significant impact! If you are breathing through your mouth all day, just think how much extra water you might need to be drinking to make up for it. Nasal breathing has many other benefits for people with POTS including significantly impacting nervous system regulation. Ready to learn how to start breathing better for your POTS? DM me “BREATHE” to learn how I incorporate breathwork into my coaching programs! Svensson S, Olin AC, Hellgren J. Increased net water loss by oral compared to nasal expiration in healthy subjects. Rhinology. 2006;44(1):74-77.
#dysautonomie #dysautonomia #dysautonomiainternational #dysautonomiaawareness #dysautonomiaawarenessmonth #pots #potssyndromeawareness #potsawareness #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #malaiseposteffort #MPE #meawareness #postexertionalmalaise #postviralillness #invisibleillnessawareness #maladiechronique #chronicillness #millionmissing #meaction #notjustfatigue #espoir #hope #theoriedescuilleres #spoontheory #spoonie #spoonielife
Quote of the day! #dysautonomie #dysautonomia #dysautonomiainternational #dysautonomiaawareness #dysautonomiaawarenessmonth #pots #potssyndromeawareness #potsawareness #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #malaiseposteffort #MPE #meawareness #postexertionalmalaise #postviralillness #invisibleillnessawareness #maladiechronique #chronicillness #millionmissing #meaction #notjustfatigue #espoir #hope #theoriedescuilleres #spoontheory #spoonie #spoonielife
#dysautonomie #dysautonomia #dysautonomiainternational #dysautonomiaawareness #dysautonomiaawarenessmonth #pots #potssyndromeawareness #potsawareness #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #malaiseposteffort #MPE #meawareness #postexertionalmalaise #postviralillness #invisibleillnessawareness #maladiechronique #chronicillness #millionmissing #meaction #notjustfatigue #espoir #hope #theoriedescuilleres #spoontheory #spoonie #spoonielife
Stages of ME/CFS, FMS & post viral fatigue What is the Perrin Technique? The Perrin Technique™ is a specialist osteopathic approach to diagnosis and treatment of chronic fatigue based health conditions, including: ⭐️Chronic Fatigue Syndrome (CFS) ⭐️Myalgic Encephalopathy (ME) ⭐️Fibromyalgia ⭐️Post-viral fatigue syndromes like Long-Covid. Osteopath and Neuroscientist Dr Perrin developed his understanding over 30 years of working with people experiencing chronic fatigue. He believed that people with these conditions were not being treated appropriately and developed techniques from the skills he had developed as an osteopath. The technique uses osteopathic techniques differently to a normal approach. So, if you have tried osteopathy before, and felt it did not help, it is still worth visiting a Perrin practitioner to see if they can help. If you would like to find out more or ask any questions do get in touch, there is no obligation to book and I am happy to help. Contact today #chronicillness #chronicfatigue #myalgicencephalomyelitis #cfsme #cfs #longcovidrecovery #covid #postviral #fatigue #postviralfatigue #postexertionalmalaise #doms #toxins #toxinsout #detox #bodywork #healthylifestyle #fibromyalgia
& dikke PEM Ik dacht nog heel naïef dat ik misschien geen terugval zou krijgen van de Kasteel Vaart. Niet alleen omdat ik me tijdens de vakantie zelf beter voelde dan vorig jaar, maar ook omdat ik net 2wk daarvoor begonnen was met nieuwe POTS medicatie (Mestinon) en deze een positief effect leek te hebben EN omdat ik eigenlijk elke keer weer denk: deze keer gaat het anders zijn! Maar helaas, eenmaal thuis sloeg de PEM alsnog flink toe. Een mooie herinnering aan hoe ik mij nog geen 10 maanden geleden ELKE dag voelde. Met als conclusie dat ik mij, met alle POTS maatregelen en beter leren vermijden van PEM triggers, toch echt wel wat beter voel. De continue PEM is veranderd in ‘op’ en ‘af’. Ik kan nog niet ‘meer’ en mijn basisniveau is nog hetzelfde maar voel me in plaats van totaal van de wereld toch ietsje meer ‘onderdeel van’. En dat is voor mijn doen al enorme winst! Ok, tot zover de positieve blik… want het is natuurlijk gewoon bagger dat ik weer de hele dag adrenaline door mijn aderen voel stromen, opgefokt ben, wakker wordt met het gevoel een nacht doorgefeest te hebben, trage hersenen, gevoelig voor geluid, licht en warmte, eindeloos wakker lig, hoofdpijn, piepende oren, wazig zicht, band om borst, stram lichaam, pijnlijke spieren, moeilijker rechtop kan zijn, etc, etc. Mijn Garmin geeft een vlakke witte lijn met alleen maar rood, overdag en ‘s nachts. Gemeen hoor, die wraak van LongCovid op de BROODNODIGE mentale boost die de vakantie mij gaf. Zo blijf je ongewild laveren tussen mentaal of fysiek staande blijven. Afsluitend met een positieve noot… over een week of 4 tot 6 zal ik er naar alle waarschijnlijkheid weer uit de PEM zijn*. *alhoewel eerder behaalde resultaten natuurlijk geen garantie bieden voor de toekomst…
🌟 Was ist eigentlich PoTS (Posturales Orthostatisches Tachykardiesyndrom)? 🌟 🧬 Was ist PoTS? PoTS ist eine Störung des autonomen Nervensystems, die zu einer signifikanten Erhöhung der Herzfrequenz führt, wenn eine Person von einer liegenden in eine stehende Position wechselt und länger steht. Dies kann zu Symptomen wie Schwindel, Ohnmacht, Herzrasen und extremer Müdigkeit etc. führen. 🔗 Verbindung zu Long-COVID, ME/CFS und Post-Vac: Viele Betroffene berichten von PoTS-Symptomen nach einer COVID-19-Infektion oder Impfung, was darauf hinweist, das Long-COVID mit einem dysregulierten Nervensystem zu tun hat (Dysautonomie). 🔄 Erkenne die Symptome: - Es tritt Herzrasen nach längerem Stehen auf - Es treten z.B. Übelkeit, Kopfschmerzen, Schüttelfrost oder Schwitzen nach längerem Stehen ein - Auch langes Sitzen kann dies Symptome auslösen 🚨 Wichtig: Eine genaue Diagnose und Behandlung sollte immer unter Aufsicht einer Fachärzt:in erfolgen, der Erfahrung mit autonomen Dysfunktionen hat. Ein Stehtest dazu kann auch zu Hause durchgeführt und anschließend fachärztlich ausgewertet werden. 🤗 Teilt hier gerne eure Erfahrungen mit PoTS! Lasst uns gemeinsam das Bewusstsein und das Verständnis für diese herausfordernde Erkrankung fördern. #longcovid #postcovid #covid #corona #covid_19 #immunsystem #immunschwäche #infektanfälligkeit #immunsystemstärken #postcovid19 #postvac #mecfs #mecfsawareness #mecfswarrior #fatigue #chronicfatigue #postexertionalmalaise #pots #potssyndrome #brainfog #dysautonomie #dysregulation #herzrasen #erschöpfung #pem
I will definitely appreciate the day when I can actually go out for tea and not pay for it for over a week. #longcovid #postexertionalmalaise #hungover #overit #appreciatethelittlethiings #iwantmylifeback
In solidarity for the millions struggling with ME/CFS I went blue on this Sunday. I don’t have the diagnosis myself, but got Long Covid and many of my online friends is pals with ME/CFS that all have been so helpful in my Long Covid recovery. Please, if you can donate to an ME/CFS charity the price of one slice of cake and a cuppa tea would have cost you at a café. Today I had a tea party for one at my house, but with a loads online 🫖 The cool earrings is from @lenas_gaver 💙🩵 #bluesunday2024 #teapartyforme2024 #goblueformecfs2024 #goblueforme #chronicfatigue #chronicillness #postexertionalmalaise #fatigue #myalgicencephalomyelitis
Aggressive rest (lying still with your eyes closed, doing nothing rather than listening to music or looking at your phone) · Preemptive rest So far despite that I could have stood a bit more sleep for alk I did yesterday my ih seems to be behaving ... I've been resting still w my eyes closed for an hour straight and as far as I know lol , sometimes ya don't know you sleep, I didn't fall asleep uncontrollably. OK back to rest. #chronicillness #invisibledisease #invisibleillness #stigmatizedillnesses #postviral #postviralmecfs #postexertionalmalaise #deconditioning #notreatment #nocure #missingmillions #myalgicencephalomyelitis #mecfslife #mecfssucks #mecfsawareness #mecfswarrior #mecfs #spooniesupport #spoonillicious #spoonielife #spoonie #chronicpain #chronicillnesscommunity #idiopathichypersomnialife #idiopathichypersomnia
It’s been 8 weeks since my last post, when I talked about increasing my activity levels on Saturdays in an attempt to rebuild some of the strength that I’ve lost because of my long-covid. At that point, I had done 3 Active Saturdays in a row & all seemed to be going well. I was tired for the following days, but I hadn’t had a big PEM crash so it seemed promising enough to post about it Well, everything came crashing down the following Friday, which is the day I took this photo. As soon as I got out of bed, my head was spinning & I was so off balance. I promptly let my colleagues know that I’d be taking a sick day & crawled back into bed. That PEM crash lasted for 4 days, with the first 2 days being spent in bed I took it easy for the next few weeks to give myself time to recover. I’ve been slowly adding more activity back to my Saturdays. I haven’t gotten back up to the activity level of my last post & I don’t think I will get back there anytime soon I haven’t really felt up for posting about all this, not more than my short daily updates in my stories. It was hard to feel like I was making progress & then have it all fall apart. I always knew that there was a possibility, even a probability, that my body would reject my attempts to rebuild strength. But I guess I just hoped that I had improved enough that it would work this time The good news is that it took more than 3 weeks of increased activity for my body to go into a full PEM crash. That is much better than the 2-4 days that it used to take for a PEM crash to kick in. So while it’s frustrating that I’m not getting better faster, I have to keep reminding myself that I am better than I used to be. And that is something to be thankful for. I will keep trying to do more when I feel up to it, and maybe one day, I’ll be able to go about my life like I used to
I may be living in isolation 98% of the time, but I never feel lonely 💜 --- #mecfs #mecfsawareness #myalgicencephalomyelitis #postexertionalmalaise #spoonielife #pem #housebound #millionsmissing #meawareness #endmecfs #pwme #severeme #spoonie #chronicillness #chronicfatiguesyndrome #millionsmissingdenmark
*** PACING -Online-TAG *** Die letzte Zeit war ich für meine Verhältnisse "online" sehr aktiv, mir ist es so wichtig, meine Erfahrungen weitergeben zu können und Aufklärungs- bzw. Öffentlichkeitsarbeit zu platzieren. Es geht nichts über gute Erfahrungen, Tipps, Hilfestellungen & und einen wertvollen Austausch untereinander. Allein der Behörden Marathon seit der rückwirkenden Berentung in 2022 hat mich stark weiter verschlechtert. Aktuell sitz ich am Folgeantrag für die Persönliche Assistenz, auch sehr unfangreich, zumal ich zukünftig mehr Assistenz Zeit brauche, auch durch die Verschlechterung als ursprünglich bedacht. Das alles muss gut begründet und verständlich gemacht werden. Dabei kommt das "Pacing" immer wieder zu kurz! Es sind einfach zu viele Tätigkeiten die anstehen, wenn man alleine ist und die Grundbedürfnisse sind ja auch noch da. Auch verzichtet man ungern, auf die lieb gewordenen Sozialen Kontakte hier, denn das ist oftmals einfacher und leichter ableistbar, als ein anstrengender Besuch. Man kann schreiben oder antworten, in den Momenten, wo es aktuell kurz möglich ist, zu jederzeit. Die Arbeit am Handy strengt allerdings auch extrem den Brainfog, das Gehirn, die Sehkraft, einfach das Nervensystem an, deswegen habe ich beschlossen, zukünftig mal den ein oder anderen Online-Pacing-Tag einzulegen und beginne heute damit. Möge uns der Brainfog & Fatigue Gott über Pfingsten gnädig sein und milde walten lassen. Ich wünsch euch viele schöne, kleine Momente und macht, wenn möglich heute eine Kleinigkeit, die euch gut tut .... und wenn es nur eine warme Tasse Tee ist. Man unterschätzt, wie sehr sich der Körper, über kleine Wertschätzungen freut und es euch dankt! Euer Humorvolles Kämpferherz 🤍 #pacing #grenzensetzen #achtsamkeit #körperliebe #wahrnehmung #CFS #MECFS #mentalegesundheit #glaubeandich #kämpferherz #wertschätzung #goodvibes #unsichtbarkrank #mitochondrialdisease #dysautonomia #awareness #öffentlichkeitsarbeit #multisystemerkrankung #postviralfatigue #positivbleiben #auszeit #chronischkrank #arzt #fatigue #postexertionalmalaise #energiestoffwechsel #insuffizienz #körpergeistundseele
RESHARING @pots_life_with_m.e an update with a bit more information on the cdc center for disease control USA : Website about MECFS #chronicillness #invisibledisease #invisibleillness #stigmatizedillnesses #postviral #postviralmecfs #postexertionalmalaise #deconditioning #notreatment #nocure #missingmillions #myalgicencephalomyelitis #mecfslife #mecfssucks #mecfsawareness #mecfswarrior #mecfs #spooniesupport #spoonillicious #spoonielife #spoonie #chronicpain #chronicillnesscommunity
L’art qui fait du bien! L’art fait partie de la beauté qui m’entoure. Il me touche, m’inspire, me fait du bien au quotidien. Je vous présente une toile de Sylvie Demers intitulée « Cette partie de moi ». J’adore l’art de mon amie Sylvie! Elle s’amuse à dire que je suis une collectionneuse. Frida Kahlo est sa muse et mon inspiration. Nos histoires se ressemblent. Ses citations me poussent à continuer et à être forte. Merci Sylvie Demers de faire de l’art qui fait du bien. #art #feelgood #frida #fridakahlo #sylviedermersart #beauté #beauty #dysautonomie #dysautonomia #dysautonomiainternational #dysautonomiaawareness #pots #potssyndromeawareness #potsawareness #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #meawareness #postexertionalmalaise #postviralillness #invisibleillnessawareness #maladiechronique #chronicillness #espoir #hope
Art that makes me feel good! Art is part of the beauty that surrounds me. It touches me, inspires me, makes me feel good every day. I present to you a magnificent, beautiful peacock made by 90 participants/artists in collaboration with 12ME.be. Why use spoons to create art, will you ask? Because « the spoon theory» is used by many chronically ill people to pace themselves. Follow me to learn more! #art #feelgood #peacock #beauty #dysautonomie #dysautonomia #dysautonomiainternational #dysautonomiaawareness #pots #potssyndromeawareness #potsawareness #EM #encephalomyelitemyalgique #ME #myalgicencephalomyelitis #meawareness #postexertionalmalaise #postviralillness #invisibleillnessawareness #maladiechronique #chronicillness #espoir #hope #12ME #thespoontheory #theoriedescuilleres
As I share about the deeper meaning behind my symptoms of chronic fatigue, please keep in mind this is ~my~ personal perspective. This is informed by what I have learned about nervous system regulation and brain retraining/neuroplasticity as approaches for healing chronic illness. These are the approaches that have worked best for me, to make the progress that I have! Not everyone who experiences post-exertional malaise through conditions like long-C0v!D and ME/CFS will see their illness in this way. While I believe in the power of the mind-body connection, this is not intended to feed into the misinformed narrative that is often wielded at those suffering from chronic illness that the illness is ‘all in someone’s head’ or they just need to think more positive thoughts to get better. There is room for nuance in this complex topic and I look forward to sharing more about it! #healingjourney #wellnessjourney #holistichealing #chronicillnessrecovery #mindbodyhealing #nervoussystemhealing #nervoussystemregulation #nomad #nomadicjourney #nomadicliving #nomadic #fulltimerv #vanlife #spirituality #spiritualjourney #chronicfatigue #postexertionalmalaise #mecfs
CURRENT STATUS: DAMN IT.... ICE HELPED SOME FINALLY!... I must have hurt myself existing again... This is what the deconditioning: of #mecfs , which is a disease that severely limits a person's energy capacity and so profoundly restricts their activity capacity, resulting in inevitable loss of fitness called #deconditioning ; will get you. Already have #myalgia which is muscle pain as part of the condition, but forced to lead a largely sedentary lifestyle, makes people weak and prone to #injury #straines #pulledmuscle ect... which according to the ice I must have done. And my #rhuemetoidarthritis mak3s it even more likely for me to get injured from just existing with mecfs because RA causes #inflammation in the joints, and surrounding tissues: all the attachments for the muscles. As well as being #generalhypermobility : meaning at this point not diagnosed with ehlers danlos but the hypermobility aspect of the illness is on a spectrum and anyone can be #hypermobile without having it : to some degree causing the affected joints to be loose and sloppy over extended poor weight distribution etc. Combine these three things #weakness from mecfs, hypermobile joints , and inflammation and tightness from rhuemuatoid arthritis and jyst added that I am super #clumsy and I get a load of injuries just existing.... lovely. This is going to pan out well for me as I continue getting old.... In the meantime I didn't get enough sleep and so horizontal on ice meant #idiopathichypersomnia #microsleep kicked in and I was in and out of these and #sleepattacks on ice . I am a mess lol. Back on the ice. But upright so better chance to remain conscious lol We had plans today super busy lots of physical activity I really don't want to let my #partner down. #longtermrelationship is hard when I'll especially with the mecfs. I am really going to try my damndest to make this happen for him And as hot as it is and as much walking involved crossing my fingers I won't wind up with #postexertionalmalaise. And #chronicillness #chronicpain doesn't get in the way too much today. We should already be gone but he slept in ..which is good bc I am still in pj's on ice #spoonie
Noch immer gibt es so viele Umschreibungen für das so schwere Krankheitsbild - Myalgische Enzephalomyelitis. Syndrome in der Medizin bedeuten so etwas wie vielfältige Symtpomkomplexe - (meist) unklarer Ursache. Ein Syndrom kann in der Medizin, eine eigenständige Erkrankung oder im Denken der Ärzte auch einen Symptomenkomplex ohne Krankheitswert darstellen. Inzwischen gibt es jedoch so viel medizinisches Wissen, dass es so langsam an der Zeit wäre, die Erkrankung auch angemessen und einheitlich zu benennen. Durch die im Laufe der Zeit unterschiedliche Namensgebung… bis in die Gegenwart hinein in der ME-Patient*innen in Vor-und Nachpandemisch oder PostVac, unterschieden werden, wird so die Versorgungs- und Forschungslage jedoch weiter zerstückelt. Schwierig bleibt es; wenn im medizinischen Denken einer Gruppe von Symptomen kein spezifischer Krankheitswert zugeordnet wird und damit auch nicht entsprechend im Gesundheitswesen oder den Sozialsystemen abgebildet ist. Und dazu noch: …werden unterschiedliche Symptomkomplexe oft ohne weitere Ausschlussdiagnostik als F-Diagnose bzw. psychische Störung eingeordnet. 📌Fehlerhafte F-Diagnosen entscheiden aber über den zukünftigen Behandlungsweg und stellen damit eine massive Gefährdung des Patienten dar! #severeme #myalgischeenzephalomyelitis #LongCovid #postcovid #MECFS #PostVac #nichtgenesen #nichtgenesenkids #Krankheiten #Pflege #liegenddemo #landesregierungbadenwürttemberg #teilhabestattausgrenzung #Gesundheitsversorgung #Gesundheitspolitik #unitetofight2024 #chronischeerkrankung #anamnese #postexertionalmalaise #Hauarzt #jungeärzte #medizinstudent #medizinstudentin #chronischeserschöpfungssyndrom #therapie #psychosomatik #unsichtbarekrankheit
Nothing was left unsaid, and for this I am proud. It's not often that you get some of the most important and influential voices in healthcare in the same room. I cannot stress enough my gratitude towards the American Physical Therapy Association for co-sponsoring this summit with the Office of Long COVID Research and Practice from the Office of Assistant Secretary of Health. I am still processing so much from this Healthcare Leadership summit and the number one thing resonating with me right now is this: The overarching message from all parties involved is that we can do better and we will do better. I have so much more to say around this, that I don't think instagram posts are going to cut it. I plan to initiate a newsletter that more openly captures my thoughts, feelings, observations, and opinions about this experience and Long COVID care in general. But I don't want to do this without your input. I have 1 ask. Can you please fill out a 30 second survey to let me know what you would like in this newsletter? Comment "YES" below and I'll DM you the link.
Not my best trip this week. Great spot, wonderful weather, but had a disaster the first night. Hadn't slept a wink when suddenly at 3 am Jax threw up all over my bedding. After getting him outside, taking out all the soiled blankets that I could while still having something to sleep on, and getting ready to go back inside, I realized I was locked out of the trailer. All my keys, phone, blankets/layers still inside. Jax was keeping an eye on the tree line and growling at whatever was walking around, big enough I could hear its footsteps (I'm telling myself it was a deer and not a bear) 😱 I was planning my next move of making a fire till the sun came up and then having to go try to find someone with cell reception to call a friend to bring my spare keys, when I remembered I always bring the spares when I go camping because im paranoid. Those stay in my car which is typically locked. The car keys stuck in my trailer with everything else. But by some stroke of luck, I had forgotten to relock my car after putting the dirty bedding inside. So found my spare keys and was able to get back in for the night. After all that excitement I wanted to go home the next morning but had zero energy to break camp. So tempted fate and stayed for another 24 hours. Fortunately no more disasters. I was bummed i didn't get to do the walks I had planned and spent the whole time instead resting and listening to an audio book. My body is still exhausted and I'm taking my time unpacking and cleaning up. Next trip planned in a couple weeks and hopefully that goes a lot smoother! Keep reminding myself that a bad day in the mountains is still better than being stuck at home!!! #ehlersdanlos #heds #ehlersdanlossyndrome #disability #chronicillness #chronicpain #chronicfatigue #postexertionalmalaise #migraine #spinalfusion #craniocervicalfusion #occulttetheredcord #disabledcamping #hypermobility #camping #teardroptrailer #bendteardrop #springcamping #mountaincamping #dispersedcamping #neardisaster #lockedout #aloneinthewoods #mysteryanimal #luckonmyside #notmybestmoment #anxiety
We go on vacation to relax, to get away from it all. But those of us with chronic illness and chronic pain don’t get vacations. There’s no vacation from your disabilities. We don’t get to “get away from it all”, our symptoms are still very much present on vacation (and sometimes worse, depending on weather and how much we push our bodies). The pain, the fatigue, the dizziness, the tachycardia, the headaches, and more were very present on the trip I just had to South Carolina to visit my boyfriend’s parents. The heat triggered me, I had some of the worst back pain I’ve experienced in a long time (still do), the headaches persisted, the dizziness increased, the swelling and edema were nonstop, and the random rashes and hives kept coming with no identifiable reason besides Mast Cell Activation Syndrome (MCAS). I enjoyed, but I struggled. When you can’t control the AC yourself, it makes it even harder, because my heat intolerance is pretty severe and the bedroom, for whatever reason, never got cool from the AC. The ceiling fan was on constantly, causing my chronic dry eyes to be worse than ever (to the point my contacts would get stuck to my eyes and be hard to get out, and it was hard to open my eyes in the morning), but it was that or be unable to sleep and nearly pass out from my heat intolerance. I was so swollen, and the edema in my feet and ankles were relentless. But I couldn’t wear compression socks every day— like to the beach and pool. When we were going to be walking more, like in Savannah for the day, or walking around a park, I wore maxi skirts or dresses and my nylon compression socks to keep the swelling to a minimum. I also, obviously, wore them on my flights. My mosquito allergy became annoying, but most of the rashes I got were random, and would come and go in a matter of minutes. One minute, itchy hives all over both arms. 15 minutes later, gone. A half hour later, back, and 15 minutes later again, gone. (Continued in comments)
Yesterday was monumental. In the same room we had representatives from these organizations and disciplines: Academy of Nutrition and Dietetics. American Academy of Family Physicians American Academy of Pediatrics. American Academy of Physical Medicine and Rehabilitation. American Association of Cardiovascular and Pulmonary Rehabilitation. American Association of Nurse Practitioners. American College of Physicians. American Occupational Therapy Association. American Physical Therapy Association. American Psychological Association. American Speech-Language-Hearing Association. Centers for Disease Control and Prevention (CDC) Long COVID Alliance. National Academies of Sciences, Engineering, and Medicine. National Association of Black Physical Therapy. Office of Long COVID Research and Practice. Patient Led Research Collaborative Today, the NIH and legislative representatives will be joining. In many ways, it felt like a wedding...where you have that moment that it isn't often you have everyone who matters all together under one roof at the same time. The number one thing I heard from each discipline and organization to each other is, "How can I help you? How can we support you?" There is so much good coming. There is hope. Please don't give up because we are not giving up on you.
Can we talk about how inaccessible and unfair it is on people with disabilities who want to attend an event? I've had to call 3 venues to try and change my ticket as I'm now a wheelchair user and had booked when I wasn't. I cannot explain the frustration. @ticketmasteruk mostly doesn't release accessible tickets and you have to contact the venue which outs you at a disadvantage straight away this will be me going forward. Even worse everytime I spoke to them about needing accessible tickets they told me they were unable to refund me or change my tickets and I would need to contact the venues. Needless to say every time I contacted the venues they told me to contact ticketmaster as they're who I booked my tickets with. After being passed from pillar to post I have managed to sort out x2 of the 3 events. I have had to pay twice. Instead of ticketmaster taking an access card which is linked to my account as proof that I need a wheelchair they wanted proof that I had purchased an accessible ticket prior to issuing me a refund. This meant I was our of pocket for some time in between which made things very difficult for me and my husband. My husband was the one doing all the phone calls as the stress this caused left me unable to speak and having flares. You'd think it would be simple. It is not. I also find it difficult that as a wheelchair user we are not able to access the standing floor with everyone else due to 'safety'. Whose safety? People are not meant to crowd surf at events so I fail to see how my safety would be compromised or the people around me. It feels unfair that if I want to enjoy a gig as a group I have to select 1 person out of the group to accompany me on a raised platform in my chair and meet up afterwards with the others. Gigs and events are about being together United as one with the people around you friends and strangers alike. This is something I've really really struggled with. I am putting my own health at risk for 1 of these gigs by taking a pharmacy worth of medication due to the stress and miscommunications of the venue and ticketmaster not being able to offer me an accessible ticket and me being unable to enjoy with friends.
Vi vet vad ME är, men många vet inte. Vi vet också att information om sjukdomen inte ger rättvisa i lidandet och hur svårt det faktiskt är att leva med. Ord och beskrivningar är svåra att förstå oupplevda, Men det är om än så viktigt att informera. #mesjuk #severeME #mecfs #myalgiskencefalomyelit #kronisktsjuk #kronisksmärta #kronisktrötthet #chronicillnesses #postexertionalmalaise #pots #me #cfs #hjärnan #kroppen #inflammation #livetmedme #sjukdom #funktionsnedsättning #autoimmunedisease #chronicfatigue
#chronicillness #invisibledisease #invisibleillness #stigmatizedillnesses #postviral #postviralmecfs #postexertionalmalaise #deconditioning #notreatment #nocure #missingmillions #myalgicencephalomyelitis #mecfslife #mecfssucks #mecfsawareness #mecfswarrior #mecfs #spooniesupport #spoonillicious #spoonielife #spoonie #chronicpain #chronicillnesscommunity
Exaughsted just existing gets taken to a whole new level w me #chronicillness #invisibledisease #invisibleillness #stigmatizedillnesses #postviral #postviralmecfs #postexertionalmalaise #deconditioning #notreatment #nocure #missingmillions #myalgicencephalomyelitis #mecfslife #mecfssucks #mecfsawareness #mecfswarrior #mecfs #spooniesupport #spoonillicious #spoonielife #spoonie #chronicpain #chronicillnesscommunity
#chronicillness #invisibledisease #invisibleillness #stigmatizedillnesses #postviral #postviralmecfs #postexertionalmalaise #deconditioning #notreatment #nocure #missingmillions #myalgicencephalomyelitis #mecfslife #mecfssucks #mecfsawareness #mecfswarrior #mecfs #spooniesupport #spoonillicious #spoonielife #spoonie #chronicpain #chronicillnesscommunity #autoimmunedisease #rhuematiodarthritis
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Bhai bhai😘..........💝 .. .. .. .. ................................................💞.......................................................... #😎🤏👿🔥तभी_तो_दुश्मन_जलते_हे_हमारे_नाम_से🔥💯 #🥺🖤🥀_तेरे_बिना_मेरी_हर_खुशी_अधूरी_है ☞ @mr_aku_1245 ☞insta 🆔@mr_aku_1245 .. .. .. ◉‿◉☞ .. .. .. ⊙ω⊙ →☞ #mypost #newpost #editing #edit #pothography #pikpost #pothos #portraitphotography #pothoeditor #cute #smile #gujarat #like #folow #coment #ExplorePage #postexertionalmalaise #Explore #instagram #instapost #inatalover #instapotography #vayrlpost #vayrl .. .. .. #😎💥चाहने_वालों_की_कमी_नहीं_है_जनाब😜_😁
Exercise in this space is controversial. No doubt about it. Some people have had positive experiences. Some people have had negative and life altering experiences. Everyone's experience is real. Everyone's story is valid, and I want to hear it all. I want to make sure that every version of Long COVID is represented when I show up tomorrow. I may be a physical therapist and exercise is my jam, but I am not here to represent a fraction. I am here to represent the many. So, please. Take a moment and share your experience. I really want to know these things: -who told you to exercise (or not)? -what information you were given? -what the support was like? -how did it turn out? This is a controversial subject, so please be respectful of others. You can leave your comments below or shoot me a private DM. Thank you so much. I appreciate you. . . . . #longcovid #longcovid19 #longcovidawareness #covidfatigue #covidsurvivors #covıdlife #chronicillness #longhaulerstrong #longhauler #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potsie #dysautonomia #dysautonomiaawareness #postviralsyndrome #postviralfatigue #postviralfatiguerecovery #invisibleillness #invisibleillnessawareness #butyoudontlooksick #orthostaticintolerance #exerciseintolerance #longhaulers #pem #postexertionalmalaise #mecfs #mcas #heds #hypermobilityawarenessmonth
You're invited to attend our virtual Lunch & Learn! What: Stay in Your Energy Envelop by Modifying Tasks, presented by Amy Mooney, MS, OTR/L and mother of a young woman with severe ME/CFS When: Thursday, May 16 @ 11:30am, Mountain Time Where: Zoom registration link in stories. Upon registration, you will receive a confirmation email with instructions for joining the group event. All are welcome, and we encourage you to participate at your level of comfort. We'll send you a recap of the discussion with the tips, resources, and links shared during the session. Lunch & Learn Agenda: ✔️ Welcome & Announcements ✔️15 to 20 minute presentation by a community participant ✔️ Discuss the “get to know you” question We hope to see you soon. Team BHC #MyalgicEncephalomyelitis #MCAS #Fibromyalgia #Pacing #longcovid #OI #orthostaticintolerance #ChronicIllnessResource #MECFSAwareness #PostExertionalMalaise #DisabilitySupport #SharingIsCaring #mastcellactivation #ChronicPain #COVIDRecovery #Caregivers #PostViralIllness #ImprovingQualityofLife #pwME #Dysautonomia #SupportGroup #OnlineCommunity
Nu börjar livsandarna så sakta återkomma och PEM-helvetet ge vika. Jag och ”mannen i mitt liv” har varit i Helsingfors några dagar förra veckan för att hämta det sista ömtåliga från min mammas lägenhet där som hon nu gjort sig av med, möta upp flyttfirma som hämtade kartonger som ska till henne i Stockholm och se till att resterande saker hämtades av en lokal välgörenhetsorganisation. Klara av den sista städningen och lite fönsterputs. En sån sak som bara måste göras men jag har ändå tur som har sån hjälp av sambon. Emellanåt vore det synnerligen praktiskt med ett syskon att dela vissa uppgifter med, allrahelst med en lite äldre förälder. Jag har gått på lika delar vilja och adrenalin, vilkas kraft absolut inte är att underskatta. Bromsen har varit mannen, som sett på mig när jag behövde bryta och vila. Att sen Helsingfors visade sig från sin bästa sida med strålande sol och blå himmel (om än något kyligt) gjorde allt lite bättre. Hotellfrukost, go’ kaka på stans äldsta café, den absolut godaste pizza jag nånsin ätit på en restaurang som vi bara råkade hitta runt hörnet från hotellet, en bricka med charkuterier så stor att vi knappt orkade salladen vi beställt till varmrätt…sånt satte guldkant på en i övrigt ändå ganska slitsam resa. Och ett litet extra plus går till nya Wasaline färjan…hon gick nästan ljudlöst och stadigt över Kvarken och sittsalongen var en tyst och bekväm historia. Hurra för det. Jag är, såhär i efterhand ändå lite förvånad och positivt överraskad då återhämtningen ändå gått lite snabbare än jag trodde med tanke på min ”status” i helgen,kan det vara effekten av LDN? Äntligen? Eller är det bara det mest akuta som gått över? Det får de kommande dagarna utvisa. Jag har märker att kapaciteten snabbare tar slut nu, så jag får fortsätta vara extra varsam några dagar till så hjärna och kropp får återgå till sitt gamla vanliga…hyfsat obrukbara skick. 😂 #helsinki #helsingfors #forzahelsinki #pem #postexertionalmalaise #mecfs #mat #finland #ekbergs #storarobertsgatan #meawareness #starkvilja #ldn #wasaline #aurorabotnia
Dette er skremmende utvikling og statistikk! Flere midler, bedre behandlingstilbud, mer forskning og bedre samarbeid på internasjonalt nivå må til! SKÆRPINGS FHI!!! #longcovid #meawarenessday #postexertionalmalaise #kroniskutmattelse #longcovidawareness #longcovidrecovery
This was how my LC/ME played out last week and what post-exertional malaise looks like. It's pain everywhere, a daily struggle for energy and an abnormal need for rest, a battle of mental flexibility to accept, allow and adapt. It's also determination, inner strength and a refusal to be defeated despite the difficulties. I feel really proud of me 💪🏻🌻❤️🙏🏻 . #longcovid #myalgicencephalomyelitis #postexertionalmalaise #energycrash #chronicfatigue #chronicillnessfighter #selfcare #selfcompassion #healingjourney #dailystruggle #dailywins