🚛 2020 Kenworth T680 Aerodynamic semi-truck, ready for the road! 💨 🚀 Price - $84,900 # 411599 🚀 🔥Cummins X-15 engine with 450 HP, smooth Eaton automatic transmission, and a versatile 12-speed gearbox, this truck is built to handle heavy loads efficiently. With 263,342 miles logged 🛣️ 👉 https://colossaltrucksales.com/listing/2020-kenworth-t680-aerodynamic/ 📞 (863) 678-9400 Schedule a test drive. 🔥 Get Pre-qualified today! #KenworthT680 #SemiTruckForSale #PowerOnWheels #CumminsX15 #EatonTransmission #HeavyHauling #TruckLife #QualityUsedTruck #LongHauler #BuiltToLast
Experiencing symptoms of COVID for an extended period of time can look different for everyone. Click the link in our bio to learn more! . . . . . . #LongHaul #LongHauler #research #Atlanta #Emory #Morehouse #KPGA #EmoryHope #AtlantaVAMC #RecoverCOVID #RECOVERAtlanta #nihrecoverstudy
Come laugh, mingle and “yes and” at this Saturday’s spoonie watch party! 💬💻👀 It’s free to join from 2-5 pm EDT. You’re welcome to join/leave/rejoin when it’s convenient for you. I’ll stream the show while we chat with other spoonies and allies. Click “remind me” on this post to get a reminder when we go live! 🗓️ Hashtags incoming #chronicillnesshumor #spooniehumor #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfs #meme #improv #jokes
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
Struggling with lingering symptoms of Long Covid? Vitamin B12 might be what you need! Studies have shown that B12 supplementation can boost energy levels by 30% and enhance cognitive function by up to 50% within just 8 weeks. 👉 Ready to feel like yourself again? Learn more about the power of B12 in our comprehensive guide on how to combat Long Covid naturally. Visit https://sciencebasedlabs.com/pages/ingredients today and start your journey to recovery! #LongCovidRecovery #VitaminB12 #HealthJourney #EnergyBoost #CognitiveHealth
Hey you! Yeah you, the one allergic to water this post is for you 🫂🫂🫂🫂🫂🫂🫂YOU ARE NOT ALONE PLEASE KNOW there are others like you and there are answers, there is always a way ❤️🔥
Our famous Top 10 list is hard to beat, covering treatments, clinical research and more. Have you signed up to our waitlist to get full access to our Top 10?
Tag your “Painkiller Princess” !!!✨ I wish I could turn this into a real toys set😋 Since my longcovid shit I have seen a lot of different medicines and painkillers. “Luckily” besides 4 different medicines for my asthma I only take two paracetamol three times a day😆It could be better of course but also worse. Some painkillers really gives you free side effects so I try to manage the pain with just some paracetamol 😅Hoping for the best every day❤️✨ . . #longhauler #longhaulers #longcovid #longcovidawareness #longcovidsupport #longcovidcommunity #womenofillustration #thestruggleisreal #procreatedrawing #dtiys #dtiyschallenge #dtiyschallenges #procreate #procreateart #procreatemixedmedia #doodleadaymay #kawaiidrawing #kawaiiillustration #drawingchallenge #ellovey #digitaldrawing #cuteaesthetic #womenofillustration #womenofillustrations #cuteillustration #illustrationoftheday #creativefix #creativecommunity #cutearteveryday #chunkyliciouskawaiicrafts #spreadmorecuteness
Feeling foggy or overwhelmed with anxiety long after recovering from COVID? You're not alone. A new study from the University of York reveals that 28% of people who've had COVID-19 experience similar long-term effects, known as Long Covid. But there's good news: participants in our Olivium pilot study reported a remarkable 123% boost in their energy levels, significantly reducing brain fog. Dive deeper into how Olivium could support your journey back to clarity and wellness. Discover more about our findings and how we can help at https://sciencebasedlabs.com/pages/the-science Full story: https://www.york.ac.uk/news-and-events/news/2024/research/long-covid-fog/ #longcovid #longcovidrecovery #longcovidsymptoms #longhaulcovid #longcovid19
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.
What is Long Covid? 🤔 Symptoms that last for more than 2 months after COVID-19 infection are referred to as “Long COVID” or “post-acute sequelae of SARS-CoV-2 (PASC)". 10-30% of people infected with COVID-19 will experience persisting problems. There are specialized tests that will usually show problems in those with Long COVID. In particular, autonomic testing often shows abnormal changes in heart rate, blood pressure, or blood flow. Recent studies have shown that patients with Long COVID frequently will have abnormal results on autonomic testing, exercise testing (which measures how well the body utilizes oxygen), and skin biopsy measurement of small nerve fibers. In addition, specialized blood and urine tests can identify problems with mast cells or the immune system. These tests can all be performed at the Center for Complex Neurology, EDS & POTS. In many cases, we are the only center in Arizona that performs some of these tests. Prior to the COVID pandemic, the providers at the Center have been diagnosing and treating disorders of the autonomic nervous system, mast cells, and small nerve fibers. Therefore, we have the knowledge and tools to help patients with Long COVID. It is common for us to see patients who have been to multiple doctors and were told there was nothing wrong, or no diagnosis could not be determined. It is common for patients to be shuffled among numerous different specialists. Contact us today to inquire about scheduling. (link in bio) #complexneurology #longcovid #longcovid19 #longcovidawareness #longcovidsucks #covidlonghauler #covid #covid_19 #longcovidsupport #longcovidsymptoms #covidlonghaulers #longhauler #covidlonghaul #longhaulerstrong #dysautonomia #autoimmune #autoimmunecondition #mcas #mastcellactiviationsydrome #mastcell #pots #posturalorthostatictachycardiasyndrome #phoenix #phoenixaz #arizona #scottsdale #phxaz #gilbertaz #chandleraz #drdavidsaperstein
Daily stress can wreak havoc on our adrenal glands – the small endocrine glands that sit atop our kidneys. These glands are are responsible for initiating our “fight or flight” response as they synthesize hormones, like cortisol and adrenaline, to help regulate our stress. We can take small steps every day to help support these important little glands and contribute to our overall wellness 🧘🏼♀️ #motherhoodunplugged #tiredmoms #adrenalfatigue #cfsme #mecfs #chronicfatiguerecovery #cfsrecovery #chronicfatiguesyndrome #chronicillnesswarrior #fibromyalgia #POTS #fatigue #cfs #fatiguerecovery #chronicillness #healingjourney #spoonie #healthcoach #chronicpain #spoonie #longhauler #spoonielife #invisibleillness #chronicallyill #chronicillness #autoimmunity #nervousystemhealing #selfhealer
There were more than 7 but I ran out of space. 🤦 I can recognise all of these mistakes because I've made them myself. Except probably number 7.... Do you recognise any of these in yourself? #cfsme #mecfs #chronicfatiguerecovery #cfsrecovery #chronicfatiguesyndrome #burnoutrecovery #burnout #chronicillnesswarrior #fibromyalgia #POTS #fatigue #postviral #longcovid #cfs #fatiguerecovery #chronicillness #healingjourney #spoonie #healthpodcast #chronicpain #spoonie #longhauler #spoonielife #invisibleillness #chronicallyill #chronicillness #autoimmunewarrior #autoimmunity #nervousystemhealing #selfhealer
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Do I trust you? This is the basic question every patient must answer when weighing whether to follow my recommendedations or not. And whether they follow your advice, too. Luckily, about 2/3 of our patients do. But we all know more patients are turning to alternative sources for medical information. Why is that? I don't think its because they don't believe in science. (No one is suggesting little green men with wands control our bodies or using ivermectin paste to heal broken bones). I think it's because we speak the language of science and don't do a great job translating. We assume that everyone will just "trust the science." And well, you know what happens when we assume... Join the conversation by reading this week's Substack. 🔗 in bio! #cancerculture #trust #patientcare #science #mistrust #communication #evidencebasedmedicine #statistics #math #ncstate #wolfpack #research #misinformation #raleigh #gertrude #cox #covi̇d19 #longhauler #longcovid #cáncer #survivor #docsofinsta
Apply to work with me at the link in my bio ✨
This photograph fits today. Aged; beautiful grit. Hardened seams, still strong. My parent has acute Covid again right now; is suffering through it. I can’t believe this is a world in which their final days (hopefully years; decade) will be spent. In what unseen ways is Covid-19 chipping away physicality and future moments from us all? #covid #covid19 #covid_19 #longcovid #longhauler #covid ID: Close-up photograph of a triangular portion of a bridge, the bottom beam rusted, a fence in the background.
💚 The experience of medical and parental neglect from a teenager with Long Covid/possible M.E.💚 I am posting this anonymous story to amplify the experience of a young person living with Covid/probable M.E, in a neglectful household. Please read and share and offer kind comments. If you have a message you want to send to them, I can forward this on. Below is a message from this person including action points 👇 “Hi all! I know it feels like there isn’t much to be done in situations like mine, but there are still things people can do to help. You can educate yourself on the signs this is happening, and support and validate anybody going through it. You can also generally keep spreading awareness on chronic illnesses, especially M.E. The most important thing to know is that reporting to authorities is very very rarely helpful- welfare checks are not safe. You put the patient at risk of severe distress, disruption to their entire lives, further abuse from family and potentially psychiatric incarceration. If you do know someone being neglected or abused at home, discuss with them how to support them- do NOT involve the police unless that’s agreed with them. One day I’ll share my story publicly, but until then I’m so so grateful to Fran for doing this for me. I ask that you please don’t speculate at all over who I am, even if you think you know me, for my safety. And please know that I will read every comment under this post- the kindness already shown to me by this community has been life-saving and it does not go unappreciated. Thank you so much for reading 💙” #LongCovid #MECFS #LongHauler #LongCovidKids #MedicalNeglect #LongHauler #pwME #MillionsMissing #myalgicencephalomyelitis #MEAwarenessMonth [Image IDs - continued in comments - all images have a light green background, the first image has graphics of daises either side of the text] [Image 1: The experience of medical and parental neglect from a teenager with Long Covid/possible M.E - anonymous - TW: suicide, self-harm, mental and physical illness, abuse and neglect. This post is abridged and doesn’t even cover half of what the writer has experienced.]
Soul feeding yoga retreat in Mexico with my dear yoga teacher @lilydwyerbegg to my left and our yoga family. My perimenopausal self at the time wasn’t able to do most of the classes (that’s since changed because of some amazing new approaches I’ve been using!!) but I still had such a wonderful time. Photo taken by @juliehoveandersen #chronicpain #holistichealing #holistic #holistichealth #chronicpain #health #yoga #chronicillness #chronicallyawesome #chronicillnessawareness #appreciation #thankyou #mecfs #cfs #fatigue #chronicfatigue #fibromyalgia #longhauler #health #holistic #hiddeninfections #eft #tapping #motivation #menopause #perimenopause
The next available tilt table test is over a year from now. The next appointment with the Long COVID clinic is at least 6 months away. The cardiologist can see you in 2 months. You are having problems now. Your heart is racing, you can't think straight, you're so dizzy that everything feels like a merry go-round, and you have zero energy. You should not have to wait to get answers, guidance and relief. And to be honest, the stories I have heard about the response people get when they finally do get to these specialists was not worth the wait. Many individuals are being told it's all in their head, it's anxiety, there's no way that they could have POTS, COVID doesn't cause this stuff, or that there is nothing that can be done because we don't know enough yet. These are all myths. I believe that you deserve clarity now. Your recovery shouldn't be dependent on when an overwhelmed medical system can squeeze you in. I have openings for Long COVID evaluations, 1:1 rehab coaching for Long COVID, and in my group program. DM me "no wait" and let's talk about if any one of these opportunities are right for you.
⚡️✨🎇 we love our heavy metals- in the right doses and form the right sources Copper is a humble hero that doesn’t get enough credit for all that it is responsible for in the body. But especially for long haulers, don’t overlook it! The reason I get worried about restrictive diets that ban carbs and nuts - this is partially why. We need a balanced because that is how we cover our bases with the ESSENTIAL nutrients (nutrients your body needs but cannot produce themselves)
Morning ride. Slow is smooth…. Glad to break a sweat this am. . . . . . #longcovidrecovery #longhaulcovid #longhauler #longhaulers #mcas #mecfsrecovery #mecfswarrior #mentalhealth #mindset #neurodivergent #pcs #piercings #pots #psychological #rebel #recovering #recoveryispossible #recoveryjourney #society #spoonie #struggling #tattoos #trusttheprocess #vulnerability #wales #writer #potssyndrome
Share your favorite rock songs and I’ll send you the link to Monday’s spoonie music party🤘🏻 Join me live to listen to a group rock playlist and chat with other spoonie pals. Requests welcome! It’s free to join. I’ll stream from: 6-8 pm EDT 3-5 pm PDT 10 pm - 12 am GMT Join at the link in my bio or stories 🔗 This watch party is for my spoonie pals and allies 🥄 See you Monday! Hashtags incoming #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #musicparty #groupplaylist #musicislife #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfs
#longcovid #longhauler #covid19 #chronicillness #chronicfatigue #heal #chronicpain #chronicillnessawareness
Facts #longcovid #covid19 #longhauler #sadbuttrue
Day 2 Serenity Island I woke early and watched the sun rise, I watched a man catch fish on a hand line. I didn't want to disturb Jenna so I hung outside till 7am breakfast- Island time, I managed to make a coffee using cold water 🤦♀️ then 20 minutes later what I thought was hot water came out, so I opened another sachet and added 'hot water' only it was a pre-made coffee....so I got a double strength, at that point I decided juice was best 🤣🤦♀️ I walked the whole Island and found myself grinning away- actually on a tropical island, finally felt real 🏝 White sand, blue sky! I snuck some breakfast for Jenna incase she missed out, I found the Island has a wheelchair which we could use, as we pushed her a little too hard yesterday. They have a boardwalk, so I'm getting some excersize pushing the chair! We went for a beautiful swim and lazed for a fair few hours. We made an error this afternoon, went to other side of Island via a 200m bush track for a sundowner drink.... didn't count on the mozzies in the bush as dusk settled, and I'm wary of dengue fever. So, we walked back around the beach, it was too far and unfortunately Jenna was too shattered to eat. We are in bed at 8pm 😅💁♀️ #Fiji #Serenity #tropical #longhauler #Island #areyouok #momentsofjoy #vitaminsea #ocean #longcovid #mecfs #journey
My heart goes out to all maskers in North Carolina facing disability injustice and discrimination. It’s basic human right to mask for health and safety protection. As an #immunocompromised patient and #longhauler, I don’t have any other option. Sign the petition my friend Victoria Coble created to halt NC Bill 237, attempting to ban masks in public that are used for health reasons in #NorthCarolina. 😷🪧 https://chng.it/5sLTYdCkKH If this can happen in North Carolina, it can happen anywhere. We are not expendable #MaskTogetherAmerica @covid_action_gso ID: Julie holds a sign that says ‘Immunocompromised Not Expendable’ for a selfie while waiting to catch a @turkishairlines flight.
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.
Come watch, laugh and mingle at this Saturday’s spoonie watch party! 💬💻👀 It’s free to join on Saturday from 2-5 pm EDT. You’re welcome to join/leave/rejoin when it’s convenient for you. I’ll stream the show while we chat with other spoonies. Click “remind me” on this post to get a reminder before we go live! 🗓️ Hashtags incoming #chronicillnesshumor #spooniehumor #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfs #meme #memes
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.
@m.e_and_more #MyalgicEncephalomyelitis aka #MECFS in an incurable neuroimmunological illness from which only 5% recover. But despite having no FDA approved treatments or cures there is still plenty that #doctors can do to help. ⠀ The 2021 Clinician Coalition Treatment Guidelines 2023 Mayo Clinic Proceedings & NICE 2021 Guidelines ⠀ All provide a helpful framework for treating patients with #MyalgicE as well as the 50% of patients with #LongCovid who meet the diagnostic criteria for ME / #CFS. ⠀ It is essential that #MedicalSchool teaches doctors about this common and devastating illness which affects 1.3% of the US population, yet is undiagnosed in 90% of patients and takes on average 5 years to be disgnosed. We must #TeachME to be able to #TreatME. ⠀ Many doctors do not even bother diagnosing ME or tell patients there is no point to the diagnosis because there is no treatment. ⠀ However, the opportunity for symptom management and quality of life improval is high as is the importance of testing for and diagnosing commorbidities. Therefore, the benefit of diagnosing patients and accessing these interventions is high. ⠀ This post is not medical advice, but it is a laundry list of all the things your doctor could help you with as you try to improve your quality of life. ⠀ Every case of ME is different and many subgroups of the illness respond differently to the same potential treatments. So it is important you seek out a doctor willing to take the to get to know you and find an individualized approach to management. ⠀ Most important is that you listen to your body and advocate for your right to healthcare. ⠀ #MillionsMissing #MillionsMore #ChronicFatigueSyndrome #ChronicFatigue #NEISVoid #TeachMETreatME #MEAwareness #MEAdvocacy #MEAwarenessMonth #longHauler #fibromyalgia #POTS #MCAS #EDS #chronicIllness #invisibleIllness #chronicallyIll #spoonie #fatigue #chronicPain #MedEd
#MyalgicEncephalomyelitis aka #MECFS in an incurable neuroimmunological illness from which only 5% recover. But despite having no FDA approved treatments or cures there is still plenty that #doctors can do to help. ⠀ The 2021 Clinician Coalition Treatment Guidelines 2023 Mayo Clinic Proceedings & NICE 2021 Guidelines ⠀ All provide a helpful framework for treating patients with #MyalgicE as well as the 50% of patients with #LongCovid who meet the diagnostic criteria for ME / #CFS. ⠀ It is essential that #MedicalSchool teaches doctors about this common and devastating illness which affects 1.3% of the US population, yet is undiagnosed in 90% of patients and takes on average 5 years to be disgnosed. We must #TeachME to be able to #TreatME. ⠀ Many doctors do not even bother diagnosing ME or tell patients there is no point to the diagnosis because there is no treatment. ⠀ However, the opportunity for symptom management and quality of life improval is high as is the importance of testing for and diagnosing commorbidities. Therefore, the benefit of diagnosing patients and accessing these interventions is high. ⠀ This post is not medical advice, but it is a laundry list of all the things your doctor could help you with as you try to improve your quality of life. ⠀ Every case of ME is different and many subgroups of the illness respond differently to the same potential treatments. So it is important you seek out a doctor willing to take the to get to know you and find an individualized approach to management. ⠀ Most important is that you listen to your body and advocate for your right to healthcare. ⠀ #MillionsMissing #MillionsMore #ChronicFatigueSyndrome #ChronicFatigue #NEISVoid #TeachMETreatME #MEAwareness #MEAdvocacy #MEAwarenessMonth #longHauler #fibromyalgia #POTS #MCAS #EDS #chronicIllness #invisibleIllness #chronicallyIll #spoonie #fatigue #chronicPain #MedEd
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Today's the day! My day started at 4am, but I am ready to take on Day 1 of the 2024 U.S. Healthcare Leadership Summit: Long COVID Rehabilitation. I'm looking forward to hearing from these speakers today: - Roger Herr, President of the APTA - Dr. Rachel Levine Assistant Secretary for Health, US Department of Health and Human Services -Allison O’Donnell Deputy Director, Office of Long COVID Research and Practice -Pragna Patel, Chief Medical Officer, Centers for Disease Control and Prevention -Ian Simon Director of the Office of Long COVID Research and Practice All in all, controversy and negativity about a condition should NOT be a reason why people are limited in resources, have restricted access to care, denied treatment interventions, and delayed recovery. I'm here to make sure that we do something about this. I can't wait to share this experience with all of you. Make sure to FOLLOW for updates throughout the next couple of days. *****And because the algorithm dislikes the word COVID, make sure to add me to your favorites so you don't miss a thing*******
A very early Blue Sunday 💙 (I would normally post these on the 19th, the actual day of Blue Sunday, but due to a family emergency will be off social media for the next while). To learn more about Blue Sunday and the Tea Party for M.E. please check out @theslowlane.me who has been running this wonderful fundraiser since 2013. A couple weeks ago Donnie and I had our own little tea party in our backyard. We ate some chocolate cake, drank some tea and Rio even had a Blue Sunday treat 🐾 Our little tea party donated to the @openmedf because their worldwide groundbreaking research gives us hope that one day ME will be a treatable disease. Access: the post features ALT text. #bluesunday2024 #bluesunday #teapartyforme2024 #teapartyforme #millionsmissing #millionsmore #longcovidrecovery #longhauler #covid_19 #covid #youarenotalone #openmedf #teaparty #teapartytime #myalgicencephalomyelitis #chronicfatiguesyndrome #pwme #myalgicencephalomyelitisawareness #chronicillness #chronicillnessawareness #meawarenessmonth #meawarenessweek #teatime #fundraiser #fundraising #chronicfatiguesyndromeawareness
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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
This is not something I learned in school. TBH, I think that all physical therapists should learn how to screen for mast cell sensitivity. We learn all about how to recognize diabetes, glucose and insulin regulation, and how exercise and movement impact both glucose and insulin. It is entirely within our scope to do this and it takes less than 10 minutes. A simple test that can be done is called the scratch test. This involves taking a tongue depressor and drawing a line on the skin of a person's arm or back. In most individuals, their skin will show a white line that immediately disappears. In individuals with mast cell sensitivity, they will most likely experience redness and their skin will be raised along that line. This is called dermatographism. It only occurs in 5% of the population, but it occurs in 90% of people with mast cell sensitivity. If it shows up within the first 5-7 minutes of testing it is positive. What this indicates is that this person is having a higher mast cell response and release of histamine. This is extremely important to know because an overactive histamine response needs to be stabilized and better controlled before beginning exercise. If you have Long COVID and you are in physical therapy, do a quick check on yourself to see what your response is. If positive, have a conversation with your physio as this could be a major contributor to any exercise intolerance. Please be sure to share this post and follow for more like this!
Just giving you all an update…and hopefully reassurance that whatever happens in life…you CAN cope with it…❤️ #longcovidawareness #longcovidlife #spoonie #chronicillness #pacing #postexertionmalaise #breathlessness #myocarditis #healing #longcovidawareness #longcovidawarenessmonth #longcovidawarenessday #inappropriatesinustachycardia #pots #mcas #mastcell #mastcellsyndrome #invisableillness #dysautonomia #tachycardia #longhauler #spoonielife #postcovidsyndrome #postcovidrecovery #longcovidsupport #covidsupport #selfcare
Neuroinflammation is something we end up discussing a lot with our 1-1 clients. We are frequently factoring supporting the brain as part of our health improvement strategies. Here are some of the top considerations when it comes to managing inflammation and supporting the needs of the brain. Read the full blog for more details - link in my bio. #cfsme #mecfs #chronicfatiguerecovery #cfsrecovery #chronicfatiguesyndrome #burnoutrecovery #burnout #chronicillnesswarrior #fibromyalgia #POTS #fatigue #postviral #longcovid #cfs #fatiguerecovery #chronicillness #healingjourney #spoonie #healthpodcast #chronicpain #spoonie #longhauler #spoonielife #invisibleillness #chronicallyill #chronicillness #autoimmunewarrior #autoimmunity #brainhealth #neuroinflammation
It’s days like today that remind me that recovery is possible. I’ve only been awake for 4 hours, but I was able to leave the house to grab coffee, take a shower, and get fully dressed without resting or having a PEM crash! 💕 Grateful for the small improvement! #longcovid #longcovidrecovery #longhauler #mecfs #chronicfatigue #chronicillness
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… Replace ‘pain’ with almost any other chronic symptom, and the same idea applies. Due to repeated physical trauma, chronic symptoms become deeply seated in the brain. To protect us, our brains can start to anticipate threats, which can then trigger a visceral reaction. While we cannot manifest our way out of chronic illness through positive thinking, we can challenge our brain’s built-in safety mechanism at the appropriate times and in the appropriate ways. By replacing past negative experiences with recent positive ones, we are sending a message of safety to the brain.
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Anyone else relate to this after doing too much the day before 🙋♀️ #longcovid #longhauler #covidrecovery #longcovidrecovery #longcovidsymptoms #mecfs #flareup #fatigued #chronicfatigue
Important to have this conversation 📣
… Aerobic efficiency, or aerobic fitness, describes the relationship between how hard the body has to work in order to produce a given exertion. It is directly related to one’s aerobic threshold- the point at which we first see an increase in lactic acid and reliance on glycogen (sugar) for fuel. By creating a more efficient aerobic energy system, we minimize the demand placed on the cardiorespiratory system, the nervous system, and the metabolic system. Increasing one’s aerobic fitness will have a positive impact on overall health, inflammation levels, nervous system regulation, physical capacity, ability to handle stress, as well as recovery from activity. What does increased aerobic efficiency look like? The heart will pump more oxygenated blood per beat rather than having to beat faster. Breathing rate decreases as our lungs become stronger and inhale/exhale more oxygenated air. The body starts to tap into stored fat to sustain energy for longer periods of time and can rely less heavily on glycogen. The body is better able to maintain its pH level and avoid becoming overly acidic. The body is able to better handle and recover from stress, both mental and physical, due to increased vagal tone. How do we increase aerobic fitness? Through sustained low-intensity activities like walking, cycling, and swimming. We purposely keep heart rate below a certain threshold, or maintain an effort of 2-3 RPE on a scale of 1 to 10, and gradually extend the duration of each activity once we see signs of positive adaptions and improvement. The phrase “Start low, go slow” doesn’t just apply to medication titration! If someone is not in a position to engage in the activities mentioned above, we can find a way to work within their current limits by doing gentle stretching and mobility movements in order to better prepare the body for when activity is able to be increased. The goal would be to gradually build the ability to walk, cycle, or swim since that is where the biggest improvements in aerobic fitness can be made.
How have you got back into driving as your health has improved? #cfsme #mecfs #chronicfatiguerecovery #cfsrecovery #chronicfatiguesyndrome #burnoutrecovery #burnout #chronicillnesswarrior #fibromyalgia #POTS #fatigue #postviral #longcovid #cfs #fatiguerecovery #chronicillness #healingjourney #spoonie #healthpodcast #chronicpain #spoonie #longhauler #spoonielife #invisibleillness #chronicallyill #chronicillness #autoimmunewarrior #autoimmunity #nervousystemhealing #selfhealer
Die letzte Woche war, tja eben typisch für eine moderat ME/CFS Erkrankte Kinderkrankenschwester in den 30ern i guess, nur kenn ich außer mir nur noch eine, und sie ist schwerer erkrankt und wär wahrscheinlich froh sowas erleben zu dürfen, was bei mir so war die woche 🙈 Ich hatte emotional und physisch besonders herausfordernde Dienste, die wir aber als Team so gerockt haben dass ich vor Stolz platzen könnte. Die mir gezeigt haben - das ist mein Beruf- der und kein anderer. Tja und dann bin ich hart gecrashed. Thoraxschmerzen, Erbrechen, Schwindel, Migräne, Fatique.... mein Körper hat mich wiedermal in die Knie gezwungen und ich konnte nur machtlos zusehen. Und hoffen dass es besser wird, was es bei mir Gott sei Dank meistens wird, ich hab da wohl mehr Glück als so viele andere. Und dann konnt ich tatsächlich auch wieder das Leben genießen, für andere wohl nur halbgas, aber für mich so viel mehr, denn ich weiß wie viele andere Leidensgenossen in dunklen leisen Zimmern liegen, ohne Kontakt nach draußen und sich wünschten sie könnten nur ein Zehntel von meiner Woche erleben. #mecfsawareness #longhauler #paedsnurse
Thanks @bravenewzebraworld for this amazing parody suggestion 🤩 Monday’s spoonie music party theme is: Romance 🌹 Join me live to listen to a group playlist and chat with other spoonie pals. Requests welcome! It’s free to join. I’ll stream from: 6-8 pm EDT 3-5 pm PDT 10 pm - 12 am GMT Join at the link in my bio or stories 🔗 This watch party is for my spoonie pals and allies 🥄 See you Monday! Share your favorite romance song in the comments 💬 Hashtags incoming #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #musicparty #groupplaylist #musicislife #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfsawareness
One infection was all it took to change my life for good. I had to give up everything just to survive between 4 walls. No doctor could help me...😔 It took years of misdiagnoses, gaslighting and medical traumas before one doctor finally looked further than the inadequate regular tests. There are so many people going through the same battle. ME needs to be treated like the complex neurological condition it is. It starts with raising awareness and spreading the right information. Tomorrow, may 12th, is M.E. awareness day. Please share this and help raise awareness for the #millionsmissing due to #ME. People who can't live the life they want to, people who don't have a voice anymore...😔 Be a voice for them! #globalvoiceforme ME facts: 1) ME is often triggered by infections like Ebv, lyme, covid,... Since corona, the numbers are only rising even more. 2) ME is a complex multi systemic neuroimmune disease with a range of symptoms. 3) Post exertional malaise ( #PEM, crashing after physical and mental activities) can be severely disabling. 4) There is no cure or effective treatment. 5) ME can be incredibly isolating 6) Many doctors don't even know what ME is. 😓 We deserve care and understanding and not years of gaslighting and medical traumas! We need to keep fighting for funding and research. But mainly we must continue to educate doctors, so all the current patients can get the care they need and deserve! They shouldn't have to suffer in silence! Where is the compassion for all these patients? It's inhumane ! #TeachMETreatME . Together we can me a difference !💙 . . Pic credit designer Stijn De Boeck Text: @lifeprettysick . . . #mecfswarrior #mecfsawareness #mecfsbelgie #meaction #myalgicencephalomyelitis #pwME #meawareness #learnfromme #goblueforme #livingdeath #postviral #longhauler #longhaulfight #ebv #chroniclyme #chronicfatigue #alwaystired #painwarrior #chronicpain #chronicillnesswarrior #chronicallyill #disabledlife #invisibledisability #invisibleillness
Let's explore this relationship. Most people think of hypermobility as being double-jointed, bendy and flexible, which it most certainly can be. Hypermobilty goes beyond being super bendy. It is a spectrum and can effect more tissues in the body besides the ligaments of the joints. The reason people have extra motion at their joints is because of an abnormality in the make-up of the collage in the ligament and connective tissue. Connective tissue is found throughout the body including in our arteries, veins, intestinal lining, and organs. What this means is that other parts of the body are at risk of not functioning optimally besides having loose joints. What does this have to do with COVID? The COVID spike protein likes to bind to Ace-2 receptors. Ace-2 receptors are also found throughout our arteries, veins, intestinal lining, lungs, and other tissues. So, the virus has a way of attacking an area that is already weakened and susceptible in a person with hypermobility. The crazy thing is that you may have never had an issue with hypermobility before or even considered yourself hypermobile until COVID came along and exaggerated everything. Just because you are more susceptible to Long COVID if you have hypermobility, doesn't mean that you'll never get better. There are plenty of interventions that can be done. There's so much more to this story, but what questions do you have? Drop them below and I'll answer them!
My chronic buddy just survived her third stroke and battles her third cancer diagnosis.💪🏻 Kyra is so strong and her perseverance is really inspiring. I'm so blessed to have her still with me. 🫶🏻 She just turned 16! . We've been through so much together. Laughter, joy but also a lot of challenges.😪 The only good thing about being homebounded (for over a decade already) due to chronic illnesses, is being able to spend all my precious time with her. My best friend, my soulsister, therapist... divine love. She loves me more than some so called family and friends ever did. She doesn't even know how many times she has saved me. #notjustadog . It's hard to see my best friend slip away piece by piece. Every day could be the last. Somehow, I try to prepare myself for the day I will have to let her go. The thought alone already makes me nauseous. She has become a part of me and when she dies I will lose a part of myself.😞 . Loss is an inevitable part of life, so you better love big. Spend your limited precious time and energy wisely. We will never have today again.🌌 . . 💜 . . . . . #chronicillnessawareness #chronicpainwarrior #chronicillnesswarrior #chronicillnesslife #chronicfatigue #chronicwarrior #chronicfatiguesyndrome #chronicallyill #invisibleillness #invisibledisability #invisibleillnessawareness #chronicpainsucks #chronicmemes #fibrowarrior #chronicillnesssupport #mecfsawareness #disabledlife #transversemyelitis #autoimmune #millionsmissing #niethersteld #mecfswarrior #longhauler #myalgicencephalomyelitis #chroniclymedisease #lymediseaseawareness #dogtherapy #dogmomsofinstagram
Just coming back from the IMCO event. It was great. We made lots of new business contacts and made some new friends. I wanted to say THANK YOU to the IMCO @ IMCO team for creating a great environment where like minded business people can meet and drive forward to deliver the right medical and healthcare supplies to the people who need them. Our innovative N95 and N95 surgical respirators were a hit at the event. As a side note the reason I’m dressed up like a pirate is there event had a pirate theme. #mask #respirator. #respiratormask. #n95facemask. #LongHauler. #CleanAir. #LongCovid. #MaskTogetherAmerica.
Why did I get butterflies posting this hahaha I just got so excited for you to know more about diamine oxidase and understand what it actually is. 🤌🏻 I can help you make more of your own! 🪄I’m accepting new clients apply for a disco call at the link in my bio 🪩
I don’t post a lot because I know there is a lot of blessing blockers but I just wanna let all of ya know God is good through it all and I thank him everyday … #Flatbedmafia #Longhauler #7yrs&counting #Daybyday
… Let me preface this by saying 3 things: -An individual must be in a position where their body is able to properly respond to new or increased stimuli in order to benefit from movement, meaning they cannot be in the midst of a significant crash. However, if someone has been resting hard for weeks and months but getting worse, then deconditioning is likely starting to play a role in symptom severity. -I’m not talking about traditional exercise here. ‘Movement’ can be as small as one needs it to be in order to respect their body’s limits. 2-3 micro movements done lying down in bed still counts! -I’m also not encouraging anyone to intentionally trigger PEM. Gently pushing the upper end of one’s current limits is different than blatantly pushing past those limits. With that said, how does avoiding movement actually result in PEM being triggered more easily? First, the threshold at which PEM (post-exertional malaise) is triggered directly correlates to an individual’s aerobic efficiency. The greater aerobic efficiency, the greater tolerance for activity and stress of any kind. The longer we go without movement, the less efficient we become. While deconditioning is not the cause of the illness, this is where it starts to have a significant and direct impact on overall capacity. Second, avoiding activity for long periods of time means that there will be a greater mental and physical stress response once we start to do that thing again. Combined with lower aerobic efficiency, this makes it much harder to start adding or expanding activity without significant repercussions. The bottom line- It is imperative to figure out what we can do right now, despite the symptoms, even if that looks quite different than what we may have done in the past. Start small, remove the ‘all or nothing’ mindset, be willing to experiment, and figure out what works for you. If you’re having trouble figuring things out on your own, then 1:1 Coaching might be a good option to get you moving safely, comfortably, and consistently. Link in bio for more details.
@m.e_and_more There are over 36 documented symptoms of PEM and while dehbilitating, #fatigue is only a small piece of the picture. The name #ChronicFatigueSyndrome #CFS minimized the reality of the disease and “is like saying someone with dementia has chronic forgetfullness syndrome.” ⠀ ME is has lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. 70% of patients cannot work and 25% are housebound or bedbound with #severeME. Only 5% recover. ⠀ 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ I am a #GlobalVoiceForME for the 55 million people and 1.3% of Americans who suffer this devastating illness. It has destroyed my life and left me bedbound, dependent on 24/7 caregiving. It affects my family, finances, food choices, access to healthcare and every waking minute of my life. ⠀ #longCovid has brought attention to #postViral illness but it has also multiplied the problem with #millionsMore #longhauler patients. 6.8% of American currently report #longCovid and 17% report having had it in past or present. ⠀ On May 12th #MEAwarenessDay we #GoBlueForMECFS to bring attention to this #livingDeath, please #AllyWithME and share this post to raise awareness of this devastating illness. ⠀ While there is no FDA approved treatment or cure for ME, doctors following the NICE Guidelines or Mayo Clinic Proceedings can greatly improve their patients quality of life. Resources for doctors to provide evidence based care to ME patients are available at linktr.ee/teachmetreatme2024. ⠀ #CFIDS #NEISVoid #MedEd #millionsMissing2024 #ChronicIllness #Spoonie #InvisibleIllness #MEAwareness #covid19 #MyalgicE
#MyalgicEncephalomyelitis aka #ME (ICD-10-G93.3) is a neuroimmunological disease that causes extreme #chronicFatigue as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE). ⠀ There are over 36 documented symptoms of PEM and while dehbilitating, #fatigue is only a small piece of the picture. The name #ChronicFatigueSyndrome #CFS minimized the reality of the disease and "is like saying someone with dementia has chronic forgetfullness syndrome." ⠀ ME is has lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. 70% of patients cannot work and 25% are housebound or bedbound with #severeME. Only 5% recover. ⠀ 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that #doctors will learn to #teachMEtreatME and give #millionsMissing the care we deserve. ⠀ I am a #GlobalVoiceForME for the 55 million people and 1.3% of Americans who suffer this devastating illness. It has destroyed my life and left me bedbound, dependent on 24/7 caregiving. It affects my family, finances, food choices, access to healthcare and every waking minute of my life. ⠀ #longCovid has brought attention to #postViral illness but it has also multiplied the problem with #millionsMore #longhauler patients. 6.8% of American currently report #longCovid and 17% report having had it in past or present. ⠀ On May 12th #MEAwarenessDay we #GoBlueForMECFS to bring attention to this #livingDeath, please #AllyWithME and share this post to raise awareness of this devastating illness. ⠀ While there is no FDA approved treatment or cure for ME, doctors following the NICE Guidelines or Mayo Clinic Proceedings can greatly improve their patients quality of life. Resources for doctors to provide evidence based care to ME patients are available at linktr.ee/teachmetreatme2024. ⠀ #CFIDS #NEISVoid #MedEd #millionsMissing2024 #ChronicIllness #Spoonie #InvisibleIllness #MEAwareness #covid19 #MyalgicE
Misspell a medical condition in the comments and I’ll send you the link to Saturday’s spoonie watch party! 💬💻👀 It’s free to join this Saturday from 2-5 pm EDT. You’re welcome to join/leave/rejoin when it’s convenient for you. I’ll stream the show while we chat with other spoonies. Click “remind me” on this post to get a reminder before we go live! 🗓️ Hashtags incoming #chronicillnesshumor #spooniehumor #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfs #meme #memes
I'm housebound and use a wheelchair for accompanied outings. My main symptom is fatigue. I can't drive, read books or exercise. #goblueformecfs for #mecfsawarenessmonth . Our official day is May 12th. Millions of us are missing due to this horrific illness and I'll be posting to raise awareness culminating in a reel about my experience on Sunday. #mecfsawarenessday #mecfs #millionsmissing #millionsmissing #goblueformecfs #goblueforacure #pwme #neisvoid #longmono #longhauler #disabled #disableddrag
Ensuring your safety comes first! Here are some safety tips to make your trip safe, from start to finish! #trucking #safetyfirst #truck #longhauler
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Your story matters. Your experience is important. The only way that change will come is if you speak up. I have been asked to attend the U.S. Healthcare Leadership Summit: Long COVID Rehabilitation. In attendance will be the some of the most important individuals when it comes to making change in health care. So that I can best represent your experience, can you please share more about your interactions with Long COVID clinics? Here are some things I want to know: - What was the process like? - What was/is your wait time? - What was the experience like? - What support was provided? - Did you get the answers you were looking for? - Did you get support? - What was the ultimate outcome? These are just some suggestions, but I truly want you to speak to the heart and share what your overall impression and experience was. So, please share in the comments below. And if you would prefer to keep your comments private, you can send me a DM. I appreciate you.
𝐓𝐫𝐚𝐯𝐞𝐥 𝐓𝐢𝐩𝐬 - 𝐀𝐢𝐫𝐩𝐨𝐫𝐭 𝐒𝐭𝐨𝐩-𝐨𝐯𝐞𝐫𝐬 ✈️ Stay active during layovers by walking around the airport terminals instead of sitting for long periods #airplanemode #traveladdict #Holidays #longhauler #Airport
Long COVID is not a diagnosis. Getting "diagnosed" with Long COVID doesn't actually give you answers. There are more than 9 main subtypes of Long COVID and many different variations. Autonomic Dysfunction is one of them. Some key symptoms of autonomic dysfunction include: -dizziness, lightheadedness -brain fog -racing heart, chest tightness, getting out of breath - extreme fatigue Sound familiar??? Autonomic Dysfunction is one of the most common conditions triggered by the COVID virus. It's actually even easier to screen for it than you think. If you are a physical therapy, here is what you can do (and if you are a patient going to physio, here is what you can ask for): - Compass -31 - Active Stand Test or Nasa 10 minute lean test A score >20 on the COMPASS-31 indicates autonomic dysfunction. The higher the score, the more severe the autonomic dysfunction. These are just 2 quick screens that you can do with someone referred for unexplained fatigue that may be from COVID. There is more that you can do to dive deeper into the type of dysautonomia. If this was helpful, be sure to share this post. I'd also love to hear in the comments below if your physical therapist or health care practitioner has ever done these tests with you?