For anyone that needs to hear this today ❤️ You are so so so much more than your chronic illness(s)!! #potsuk #pots #potssyndrome #potsawareness #potsie #chronicillnessawareness #chronicillness #dysautonomia #hypothyroidism #underactivethyroid #thyroidproblems
Love nights like these !! #love #runnershigh #tiktokrunners #runnerslife #instarunning #run #pots #marathon #mindsetmatters #ultrarunning #fyp #consistency #thewall #potssyndrome #1%better #dysautonomia #newbalance #medicaldetectiondogs #trailrunner #runner #runhappy #ultrarunning #trailrunning #paincave #potssyndrome #garmin #salomon #runaddict #potsuk #tailwindnutrition #craftnordliteultram #rightfootleftfoot
If you’ve been diagnosed with POTS and you want to start feeling better here are 5 tips that will help you: Eat smaller protein-rich meals across the day: Large meals can cause blood to pool in the abdomen, leading to a drop in blood pressure and exacerbating symptoms of POTS. Additionally, protein in each meal will help you for several reasons, but it mainly slows carbohydrate absorption, preventing blood sugar spikes and crashes, maintaining stable energy levels throughout the day. Electrolytes and hydration: Proper hydration is key to maintain blood volume. Drinking at least 120oz of water per day, supplemented with electrolytes that works for YOU. Electrolyte imbalances are common in people with POTS due to increased fluid loss through sweating and reduced blood volume. Practice deep breathing: Deep breathing exercises can help calm the nervous system by promoting the parasympathetic state. It stimulates the Vagus Nerve, responsable of adrenaline, stress or anxiety. Simple activities like taking short, gentle walks in nature, practicing breathing exercises, or dedicating time to meditation can all promote Valgus Nerve activation. Get morning sunlight: Exposure to natural sunlight in the morning helps regulate the body's internal clock, or circadian rhythm, which is important for maintaining healthy sleep-wake cycles. By getting sunlight exposure early in the day, people with POTS can improve their sleep quality and overall well-being. And finally, exercise: Strengthening your muscles and incorporating cardio are essential. Both will help you pump blood back to your heart, improving circulation and reducing the workload on your heart, leading to better circulation and blood pressure regulation. It also will prevent future health issues. Do you have any other tips for living with POTS? Let me know in the comments! SAVE this post if it was useful. SHARE it to anyone who might need it. If you have any questions about how to implement them, you can drop me a message! #potssyndrome #pots #dysautonomia #eds #healthcoach #spoonie #potsuk #potscoach #illnessmotivation #chronicillnessawareness #POTSawareness #chronicillness #dysautonomia #POTSwarrior
For those with genetic conditions, this Radio 4 interview today is full of HOPE! Although the Addensbrook hospital professor is partially speaking on the wonderful news of full hearing restoration in a baby born without hearing, he goes on to talk about gene therapy expectations in the next 15 years being able to reverse many of the genetic conditions that cause disability or loss of function in lots of conditions. Absolutely wonderful 5 mins of inspiring forecast 🩷 Exact time was 8.46am , on catch-up BBC sounds if you wanted to listen for yourself 😀 . #bbcsounds #radio4 #geneticengineering #genetherapy #eds #edsuk #ehlersdanlossyndrome #pots #potsuk #hope #hopeful #fullofhope .
What is a ‘Couch to 5k’ program? Is it important for people with POTS? "Couch to 5K" is a training plan designed to take people from a state of inactivity or low exercise to running a 5-kilometer distance in approximately 6 weeks. This program can be especially important for people with POTS (Postural Orthostatic Tachycardia Syndrome) because it provides them with a gradual structure to improve their physical condition and cardiovascular capacity. HOWEVER, If you've been inactive for a while, you can't start with this directly, as it will unfortunately lead to a flare 🤷🏼♀️ First, you need to consider some factors: Nutrition: Ensure you're providing your body with balanced meals. Lower body strength: Begin with weight training, focusing on seated and lying exercises, then gradually incorporate upright exercises. Cardio progression: Start with low-impact options, such as recumbent bikes. Transition to running: Only reintroduce running into your routine once you can consistently perform upright exercises. Running might seem impossible for many with POTS, but it doesn't have to be that way with the right foundations in place. Building them up takes time, but the payoff is worth it. Did you know about this program? Let me know in the comments! SAVE if it was useful. SHARE it to anyone who might need it. Follow me to keep seeing more content about POTS and chronic illnesses 🩵 #Couchto5K #RunningWithChronicIllness #ChronicIllnessFitness #POTSRecovery #POTSRunner #ChronicIllnessExercise #POTSExercise #ChronicIllnessWarrior #GetBackToRunning #ChronicPainWarrior #ChronicFatigueFitness #RunningWithPOTS #ChronicIllnessSupport #ChronicIllnessCommunity #RunnersWithChronicIllness #ExerciseWithChronicIllness #potssyndrome #pots #dysautonomia #eds #healthcoach #spoonie #potsuk #potscoach
✨a sunny bank holiday always helps✨ It’s not about ‘being positive’ but trying to find ways to connect to your inner goodness. Something that is hard when you suffer from chronic health issues. Tags: #chronichealth #eds #edsawareness #edsawarenessmonth #edslife #heds #hedsawareness #ehlersdanlossyndrome #pots #potsie #potsuk
Can walking help POTS? Just think about this: Out of all of the activities that you are desperate to get back to, how many of them involve walking? Whether it is walking somewhere, doing your shopping, walking into work... All of them involve steps. The Power of Walking: Walking triggers your muscles to contract and relax - What does this means? It helps to support blood flow. It improves digestion (which is great if you’re struggling with appetite). It also decreases blood sugar (studies have shown to decrease cardiovascular risk) It helps boost vitamin D by being outside. The Problem with the Levine Protocol: Being fully sedentary for the rest of the day after your exercise will not help you. And a protocol which it’s almost solely cardio based with very little activity across the rest of the day, will likely lead you feeling even more symptomatic during your cardio and every time that you stand up... Boosting your Mental Health: Nature boosts endorphin and dopamine production, meaning that it promotes happiness. It has also been proven to reduce anxiety. Practical Tips for Starting: Start small. Build it up from your current step count. Make sure that you spread them out across the day (a lot of people can do more steps than they think possible when they are carefully planned across the day.) Make sure that they are supported by the right training, cardio and nutrition that is tailored to you. Go at your own pace with it and be patient with your progress. Find some beautiful places to walk and focus on embracing your surroundings. Did you know about all these walking benefits? Let me know in the comments! Don't forget to LIKE and SAVE it if you found it useful. FOLLOW ME to keep seeing more info 🩵 #POTS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #POTSAwareness #POTSLife #LivingwithPOTS #ChronicConditions #AutonomicHealth #Walking #walkingandPOTS #Steps #InvisibleIllness #potssyndrome #potsfitness #potstraining #eds #healthcoach #spoonie #potsuk #potscoach
🎗️ May marks EDS Awareness Month! 🧬 As someone personally affected by Ehlers-Danlos syndrome (EDS), I aim to shed light on this genetic condition that profoundly impacts our connective tissue. In EDS, a genetic mutation causes collagen to become fragile and stretchy, often visible in our skin and the hyperextension of our joints, leading to increased flexibility. Yet, the complexities of EDS extend far beyond surface manifestations. Living with EDS encompasses myriad symptoms and symptoms vary from person to person, with different degrees of severity, and include: - Joint hypermobility and instability - Joint subluxations - Dislocations - Joint pain - Loss of joint function - Joint damage, such as cartilage tear - Early joint degeneration - Ligament/tendon damage and injury - Recurrent, persistent, or chronic pain - Fatigue - Autonomic disturbances of heart rate and blood pressure, bowel and bladder function, and temperature regulation - Organ/systemic inflammation related to mast cell activation The severity of these symptoms varies greatly, even within the same EDS subtype or family, making each day a balancing act. 💙 Why a Zebra? A Zebra disease is a collective term for rare conditions, originating from a saying taught to medical students: "When you hear hoofbeats behind you, don’t expect to see a zebra." However, with EDS, nothing is straightforward. It is unexpected due to its rarity, often leading to misdiagnoses or underdiagnoses. This underscores the importance of raising awareness; many healthcare professionals remain unaware of EDS or may doubt its symptoms due to their complexity. This May, let's unite to amplify awareness and understanding of EDS. Let's share our stories, educate others, and advocate for enhanced support and resources. Together, armed with knowledge and empathy, we can truly make a difference in the lives of those grappling with EDS. #EDSAwarenessMonth #ConnectiveTissueDisorder #potsuk #potsawareness #Collagen #spoonielife #silentillness #hedsawareness #
State of the NHS - I've had symptoms of POTS since childhood, but they have significantly worsened since COVID. 8 months ago, my cardiologist referred me to a POTS specialist in London. Today I found out I have to wait another 11 months to actually be seen by the clinic. Advocating for your own health is exhausting, especially when there's nothing anyone can do - unless the government gives the NHS more funding. #POTS #Potsie #PosturalOrthostaticTachycardiaSyndrome #Spoonie #SpoonieLife #NHS #POTSUK
💙 M.E. Awareness Month 💙 Every single year I say I'm gonna prepare for it, every year I think "this is the year I'm gonna have some improvements", gonna be able to try a new medication, prepare for blue Sunday... every year I get physically worse. Every year, this is the reality, time just slips by while spending a huge amount of time horizontally surviving, and before I know it May is here. I did flip the photo as I thought I looked weird horizontal 🙈 I know a lot of other #pwme with be feeling the same or similar especially with the heaviness and frustration of the previous few months with #severeME patients being abuse in hospitals. This community amazes me, what everyone seems to be able to do from their beds, their homes, from darkened rooms, enduring the most horrible pain & symptoms while trying their best to advocate for others... it's incredible. I'm proud of every last pwME, across the spectrum of mild to #verysevereME but I do struggle to extend that same feeling to myself. It's probably the frustrations of trying to get treatment through NHS for my PoTs- cardio has washed their hands of Pots in Scotland. Despite a private script for ivabradine for months, I've been unable to fully try it as I can't get regular ecgs without cardio oversight. If you've seen my stories, I have tried it but my chest felt funny and I was unsure if it's that, my PoTs flaring, MCAS, or what. So I have a private cardio apt at the end of the month to see if they can help me. I don't have any prepared posts for #MEawarenessmonth like I'd hoped, but I'll try to participate as much as I can. ----- #MEawarenessWeek #MECFS #MyalgicEncephalomyelitis #MEAdvocacy #MEAware #MEAdvocacy #advocateforME #mecfslife #mecfsawareness #moderateME #myalgicE #invisibledisabilities #invisiblediseases #PoTs #PoTsuk #posturalorthostatictachycardiasyndrome #mcas #postviralillness #neuroimmunedisease #meresearchuk #neurologicaldisease #MEcfsAwareness #MEcommunity #decodeME
This is my story and why I’m taking on this challenge in May 💜 thank you for the endless shares and comments of love and support I can’t wait to update you daily with my progress link in bio to donate !💜 #pots #chronicillness #potsuk #walkingforpots #explore
Love this ! #runwalkstrategy #runnershigh #tiktokrunners #runnerslife #instarunning #run #pots #marathon #mindsetmatters #ultrarunning #fyp #consistency #thewall #potssyndrome #dysautonomia #newbalance #medicaldetectiondogs #trailrunner #runner #runhappy #ultrarunning #trailrunning #paincave #potssyndrome #garmin #salomon #runaddict #potsuk #tailwindnutrition #craftnordliteultram #rightfootleftfoot
Up early for a nice long run as I ramp up the training now in preparation for The Wall 2024 ultramarathon 70miles 15 June 2024 raising awareness of POTS syndrome and funds for Medical Alert Dogs #runwalkstrategy #runnershigh #tiktokrunners #runnerslife #instarunning #run #pots #marathon #mindsetmatters #ultrarunning #fyp #consistency #thewall #potssyndrome #dysautonomia #newbalance #medicaldetectiondogs #trailrunner #runner #runhappy #ultrarunning #trailrunning #paincave #potssyndrome #garmin #salomon #runaddict #potsuk #tailwindnutrition
When I tell you I got sick, trust me - I got SICK 😅 But no one was bothered, some people asked if I was okay or if they could get me anything but literally not a single person pulled a face or moved away or any of the things I was worried about! The passenger assistant was so so lovely as well and just waited for me to finish 😂 (PSA - Every individual is different, this is just my personal experience!) ___ #pots #potsuk #dysautonomiaawareness #disabilityawareness #travellingwithkids #disabledtravel #catchflights
We all want to heal from chronic illness. It’s not miraculously going to vanish, so what can we do to help ourselves? 🤍 Remove (triggers & mediators) 🤍 Restore Health (via diet, lifestyle, spiritual health) 🤍Rejuvenate (change your life to live better) #This 3-step program could enable you to regain your life ❤️. #chronicillnessproblems #chronicillnessillnesses #chronicwarriors #chronicillnessadvocate #chronicdisease #recovery #chronicillnessrecovery #mentalillnessawareness #recoverywarrior #recoverywarrior #cfs #eds #fatigue #potsuk #eds #functionalmedecine #nutritionist #bant #naturopath #nutritionist #naturopathicnutrition #3stepstohealth #chronicillnessrecovery #optimalhealth #ms #parkinsons #parkinsonsdisease #pots #dysménorrhée #pain #migraines #hypermobilitysyndrome #recovery #recoveryjourney
Prep update - 2 weeks ✅ Well after 3 years off, I was hoping at least for a smooth start having done everything I could to set myself up for a productive prep. Unfortunately, it rarely seems to work out like that 🤣🤣 Rather poorly for the week before prep so off training, made it back for 1 session only for my body to fight back and ended up being off for another 10 days. Finally back training now which I could not be happier about (even feeling as weak as I do after all of the time off) and slowly starting to regain some momentum amongst the unsettled routine with my poorly injured cat. Needless to say, far from a good start but also just to say that in spite of all of this, weight has been trending down, I am starting to feel fuller again off the back of the illness and definitely looking tighter as well. It certainly hasn’t been a bad start and in spite of the above, still loving it. It is important to remember that it could always be worse. Around 19 weeks to go - no changes yet since the start, food is high, steps are at 12,000 and cardio is 4 x 30 mins (which I have not been able to fully complete yet due to these horrid illnesses fml. Anyway, onwards and upwards - happy with these all considering and hoping they will only continue to get better under the magic eye of @coachedbychristian ⭐️
A friendly reminder to start the week ahead! 🌟 Drop a "🩵" if you read this! 💾 Save it for when you need to read it later 🫶 #PoTS #PoTSUK #PosturalTachycardiaSyndrome #PosturalOrthostaticTachycardiaSyndrome #PoTSAwareness #Dysautonomia #DysautonomiaAwareness #chronicillness #chronicillnessawareness #motivationalquotes #selfreminder #quotesdaily #inspirationalquotes #reminders #mondaymotivation #mondaymindset #growthquotes
I love sunrise runs - starting the day like this is incomparable and not replicable by any gym !! FACT X The Wall 2024 ultramarathon 70miles 15 June 2024 raising awareness of POTS syndrome and funds for Medical Alert Dogs #runwalkstrategy #runnershigh #tiktokrunners #runnerslife #instarunning #run #pots #marathon #mindsetmatters #ultrarunning #fyp #consistency #thewall #potssyndrome #dysautonomia #newbalance #medicaldetectiondogs #trailrunner #runner #runhappy #ultrarunning #trailrunning #paincave #potssyndrome #garmin #salomon #runaddict #potsuk
Best of luck to everyone running the London Marathon today 💜 And a special shout out to Roisin for raising money for PoTS UK - thank you to everyone who has donated to her fundraising page so far! You can visit Roisin’s fundraising page here: https://2024tcslondonmarathon.enthuse.com/pf/roisin-timoney-runningforpotsuk #LondonMarathon #PoTSUK #UKCharity #PosturalTachycardiaSyndrome #PosturalOrthostaticTachycardiaSyndrome #RaisingAwareness #RunningForPoTS #TCSLondonMarathong2024
Your feedback following our Peer Support Groups gives our amazing volunteers such a lift, knowing that they are actually helping and supporting you. During Volunteers Week in June we would love to show them your appreciation by sharing your stories of how they have inspired or helped you. If you would like to give a shout out to a particular volunteer (or volunteers) please complete this short form https://www.surveymonkey.com/r/PV29FQJ If you would like more information about our Peer Support Groups, please visit the PoTS UK website (link in bio!) or type: https://www.potsuk.org/events/pots-uk-online-peer-support-groups/ 💜 #Feedback #PeerSupportGroup #VolunteersWeek #Volunteering #PosturalTachycardiaSyndrome #PoTSUK #UKCharity #PosturalOrthostaticTachycardiaSyndrome
Starting a gym routine when you have been diagnosed with a chronic illness like POTS requires careful planning. Here are five essential tips to help you get started: ✅Start slowly and gradually: Begin with seated and lying exercises only. A combination of strength training and cardio. This gradual approach can help prevent flaring POTS symptoms. ✅Warm up and rest between exercises: Make sure you warm up for each exercise and to have plenty of rest between exercises. Trying to rush through your session will not help your POTS or your ability to build muscle. ✅Stay hydrated and maintain electrolyte balance: Having enough water and electrolytes in you before training is essential. Also make sure that you have a protein-rich, balanced meal around 1-2 hours before training. ✅Use tools and techniques to manage symptoms: Wear compression if needed. Pay attention to your bracing and your breathing. Holding your breath will cause causes dizziness and lightheadedness. ✅Focus on Posture and Form: Pay close attention to your posture and form during exercise to minimise the risk of injury and maximize the effectiveness of your workouts. Maintain proper alignment, engage your core muscles, and move with intention and control. 🌟 If you are ready to start, drop me a message or click the link in my bio! 🌟 #potssyndrome #potsie #potsawareness #potsuk #potscoach #potstraining #dysautonomiapots #dysautonomia #eds #chronicillness #chronicillnessawareness #potsfitness #spoonie
DYSAUTONOMIA AWARENESS MONTH ❤POTS is a form of dysautonomia- a disorder of the autonomic nervous system. 📸This brilliant post by @dear_chronic_pain shares the statistics to help explain what living with POTS is like. How long did it take you to get diagnosed with POTS? 👇 #POTS #PotsAwareness #PotsAwarenessMonth #Dysautonomia #DysautonomiaAwareness #DysautonomiaSucks #DysautonomiaAwarenessMonth #DysautonomiaWarrior #PotsWarrior #PotsUk #PotsSyndrome #PotsAwareness #PotsieLife #ChronicWarriors #ChronicIllnessCommunity #ChronicIllnessAwareness #PosturalTachycardiaSyndromeAwareness #PosturalTachycardiaSyndromeCommunity (Image description: Set on a white background. The headline reads- LIVING WITH POTS Under this is an image of a woman with brown hair covering her face with both hands, which is in the centre of the post. The text around the image reads as follows, ●POTS affects 1-3 million Americans. ●The average diagnosis time for POTS is 5 years 11 months. ●60% of patients told their symptoms are due to anxiety or that "it's all in their head". ●Approximately 25% of people with POTS are so disabled they cannot work or go to school. ●There is currently no cure for POTS. ●Quality of life has been reported similar to COPD and congestive heart failure. ●The organ systems most commonly affected in POTS are neurological, pulmonary, cardiovascular, urinary, gastrointestinal, secretomotor and pupillomotor. End of description.)
Start of prep 2020 to start of prep 2024. Roughly 8kg heavier now. And an absolute rollercoaster of a 4 years in between. It only feels like yesterday when I broke down in the gym thinking I would have to stop living the bodybuilding lifestyle, let alone be able to compete again. But in spite of how I felt, how awful most of my sessions were for a long time with my stomach, I continued to show up and just try. And I am really proud of myself for pushing through and getting myself to this point. Learning to adapt my sessions and nutrition, work with my stomach more and also my mindset around my constant struggles. I stood in the gym and felt extremely grateful today. Grateful to be given another opportunity to do the sport that I love so very much. Because bodybuilding and prep are just that. They are a privilege that not everyone has the luxury of being able to do. To be able to push your body to such extremes and control so much in your life to such a small degree. It’s not a sport that should be taken lightly. But one that I do love. So I’m just excited to learn more about myself this prep and to remember that when times get tough: It is a choice and a privilege to be in this position. Thank you @coachedbychristian for putting up with me and pushing me further than I thought I would ever be able to go. 💛 #potssyndrome #pots #dysautonomia #chronicillness #fitness #potsuk #potscoach #bodybuilder #figure
Have you ever felt dizzy from getting up too quickly? Or experienced rapid and strong heartbeats for no apparent reason? These are just some of the most common signs of POTS, but did you know there are many others? Many of us have lived with these symptoms for years, thinking that they were simply part of our daily lives. Perhaps told it was anxiety or in our heads. It took me over two and a half years to get a diagnosis but it takes many people even longer than that. But the truth is that these signs could be indicative of something else going on and it is essential to not overlook them. If you suspect you have POTS, let me tell you that you are not alone on this journey! I got you 🫶🏻 In the link in my bio you can find a FREE GUIDE to start this path 🆓🌟 #potsawareness #potsuk #chronicillnessawareness #chronicillnesses #eds #dysautonomiawarrior
What is Ehlers Danlos Syndrome? How many times has a medical professional asked you this? We have to be our own advocate and expert on the condition more than we should 🦓🦓 #rareillness # #ehlersdanlossyndrome #posturaltachicardiasyndrome #zebrastrong #chronicillness #edsuk #nirdp #potsuk #rareni
Not just a diet, it’s a lifestyle ❤️ This is an example of what I can eat while following a lifestyle tailored to my needs with POTS. After this meal, I know I won’t experience fatigue, brain fog, and dizziness 😵💫 So, what’s the secret? 💫 I’ve spent time building up my health so that my symptoms, including those after meals, no longer affect me at all. A good rule is: Instead of sticking to two or three large meals, opt for smaller, more frequent meals throughout the day – aiming for 4-5 meals spaced out every 3-4 hours. Each meal should include a protein source, a healthy fat, and a small portion of slow-digesting carbs. This will prevent drastic spikes and crashes. Protein and fat sources aid in satiety, slow down digestion, and promote stable blood sugar levels. This is particularly crucial for POTS sufferers, as the digestive process can exacerbate symptoms like dizziness and fatigue. Remember, research shows that carbs draw the most blood to the digestive system, away from other limbs. So it’s essential to consume them in moderation and spread them out throughout the day – especially during flares or when starting to manage symptoms. Let’s commit to a lifestyle of health, not just a diet or a phase. 💪 #potssyndrome #pots #dysautonomia #chronicillness #potsawareness #potsnutrition #eds #healthcoach #spoonie #potsuk #thepotscoach #chronicillnessdiet
More beautiful spring planting from @rachellkeebs in the classic Tuscan pot, Vaso Liscio. All our pots are handmade in Tuscany with the finest galestro clay. Made to last! #handmade #classicpot #tuscanterracotta #terracottapots #italianpots #frostproof #vasotoscano #gardenpot #potsuk #springbulbs #englishgarden #gardeninspiration #terrace #patio #terracotta
🫠 Credit: @chronically.kelsey . . . . . . . . . #pots #posturalorthostatictachycardiasyndrome #potsie #dysautonomia #dysautonomiaawareness #chronicillnessawareness #potsawareness #potsuk #potsie #potssyndromeawareness #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome
Having a rare type of POTS life has gotten very difficult, it stopped me doing what I love the most which is obviously photography. Managed to get a few shots of this little butterfly before it was far too much for me to carry on. Definitely happy with these 3 pics tho so it was worth it ☺️ . . . . . . . . #potssyndrome #pots #potsawareness #potsuk #photo #photograph #photographer #photography #spring #butterfly #heartcondition #healthawareness #heart #tired #postualorthostatictachycardiasyndrome #lifegoeson #livingwithpots #lifestyle #canon #canonphotography #springtime #canonpowershot #butterflyphotography #peacock #colourful #bright @potsuk @pots_sydromeawarness @canonuk
Unless you've experienced constant pain, I really don't think people understand. When I've said I'm constantly in pain people look at me like.....you can't be, bot ALL the time. So you learn to s I've and say you're fine 🤷🏻♀️🦓🦓 #pain #edsuk #potsuk #chronicillness #noteasy #painmanagement #ehlersdanlossyndrome #posturaltachicardiasyndrome #nirdp #raredisease #chiarimalformation #rareni
Love a Sunday morning Set up time Planner one done This is my health planner I use to track my symptoms. @potsuk I used @the_happy_planner sticker sheets make it so much quicker to set up with stickers @zebrapen_uk clickart pens as they are so bright @punnymoon number stickers the colour go well with my set up #potsuk #trackers #healthsymptoms #planneraddict #plannerstickers #smallbusiness #smallstickerbusiness #plannertime #healthylifestyle
And it turns out I was right! I have been diagnosed with many conditions, which includes POTS, EDS and endometriosis. All of these were diagnosed very late because doctors kept telling me it was anxiety and IBS that was causing my symptoms…something I’m sure many of us have heard before, right?🙃 It hasn’t been easy trying to advocate for myself and ask for things to be done, but I feel that is the only way to try and get treatment when doctors don’t believe you. So if you know somethings wrong, keep pushing for answers!💛 #endometriosis #periodpain #chronicillness #endometriosisawareness #chronicpain #endowarrior #bsge #endo #womenshealth #invisibleillness #bloating #fibromyalgia #fibroids #adenomyosis #health #extrapelvicendometriosis #endosisters #mentalhealth #endometriosiswarrior #potsuk #pelvicpain #arrhythmia #endometriosisuk #antiinflammatorydiet #thoracicendo #thoracicendometriosis #endometriosissurgery #painfulperiods #laparoscopy #ibsdiet
How do you overcome a set back with your health? I have definitely had my fair few over the past few years in particular, many relating to my health. EVERYONE has set backs, some are just bigger than others. But how do YOU deal with them and move forwards? ➡️ My first bit of advice is making sure that you are framing the set back correctly. This can be a game changer in your perception of the situation and your mental well-being because of it. Therefore - it is an essential part in helping you move forwards. When you frame a situation, it is very common to find yourself comparing the “best times” to the current shit that you have going on. Which is an unfair comparison and not a good way of framing it. For example, having a health flare up but still making it to the gym and having a bad session. You could frame this by saying that you had a shit session as you didn’t hit the same numbers as when you were feeling much better. OR You could be proud of yourself for making it to the gym at all in spite of having the nasty health flare and be proud that you have it your best effort, given the circumstances. The same situation - looked at in two very different ways. ➡️ Secondly, off the back of having a set back you may need to realign your goals. To make them realistic to your current situation, priorities and capabilities. If you keep shooting for the same goals that you had prior, you’ll likely keep letting yourself down. This isn’t very productive. ➡️ Finally, manage your mindset and expectations moving forwards. Shift your mindset towards new goals, set new targets and new focuses that will be realistic and in line with your new priorities. Perhaps you need to go a little bit easy on yourself for a while, accept that you may need to slow down and can’t expect the same from yourself that you did previously. If you want my help to overcome some of the setbacks that you might be facing, drop me a message or click the link in my bio.
I think it’s fair to say my endo journey has been very rocky, with a lot of downs. But the one things that made it better was a sense of community from people that have gone through similar experiences 💛 The accounts I have found really helpful when navigating endometriosis are: @theendospectrum @drmangs @endometriosis.surgeon.uk @francesco_thoracio @mybattlewithendo @myendojourney.b @theroadtosomething @endometriosis.uk @endorevisited @claudia.wrights_ And there are so many more that I’ve recently started following!xx #endometriosis #periodpain #chronicillness #endometriosisawareness #chronicpain #endowarrior #bsge #endo #womenshealth #invisibleillness #bloating #fibromyalgia #fibroids #adenomyosis #health #extrapelvicendometriosis #endosisters #mentalhealth #endometriosiswarrior #potsuk #pelvicpain #infertilityawareness #endometriosisuk #antiinflammatorydiet #thoracicendo #thoracicendometriosis #endometriosissurgery #painfulperiods #laparoscopy #EDS
Today is international long covid awareness day. Most people reading this will know someone who has pressed pause on life to focus on recovery. I'd hoped never to be one of them. One year ago, my first covid infection. It's legacy - long covid, disautonomia, PoTS, orthostatic intolerance, heart palpitations, post exertional malaise. Invisible symptoms - I look "fine". Especially as stubborn can see me up occasional hills. Life with long covid is smaller. No capacity for stress. Exercise. Riding bikes is beyond reach. Energy must be budgeted. Do too much? Crash for days. I'm tired of being tired. Exhausted. Fatigued. Drained. Empty. But I'm hopeful. Learning to slow down. Look after myself. Prioritise rest. Breathe. Slowly heal. Take pleasure in small things. Enjoying highland landscapes. Gentle walks. Cold river dips. Nature. Changing seasons. Good food. Better friends. Without them long covid would be darker and lonlier. If someone you love has long covid, understand they're probably doing their best. Symptoms fluctuate. Wildly. Unpredictably. Giving 10% on a day with 10% pre covid energy available is still giving 100%. If they could do something yesterday, not indicative of current capacity, especially if they over spent the energy budget. Your support will mean the world to them. Never take your health for granted. It's not guaranteed. Listen to your body. Treat it with kindness and respect. Note pictures are my 5%. Not fulltime reality. Not pictured - crashes that follow activity. Welded to the sofa. Unable at times to move. Cook. Look after myself. Air hunger. Movement is too much. Brain fog. Fatigue. I'm now coming out this crash cycle which has required more rest and proper pacing. Relinquishing unrealistic expectations of my body. Pausing most activities outside I love. Anyone else here who loves the outdoors can relate to the realities of long covid? #longcovid #longcovidawarenessday #longcovidawareness #potsuk #scottishhighlands #iceswimming #hillwalkingscotland #getoutside 📸1 @a_girl_outside 📸7 @graveliscious
Phoebe’s hard work has really paid off over these past number of months and the progress goes so far beyond the physical transformation above. So much more control of her symptoms, much greater independence and confidence in her body and its abilities. So excited for more goals in the coming months and to see Phoebe continue to get grow 🤩 #Repost @over_reactive_pheebs_ with @use.repost ・・・ June 2023 ➡️ March 2024 Between these two pictures I’ve had a massive shift in how I’m training. In June I was doing 5 HIIT sessions a week and long runs and dripping in sweat after every session and barely eating any protein or Carbs. My blood sugar was all over the place and I was having to wear a continuous glucose monitor. Fast forward to now I’m lifting heavy weights there isn’t a burpee or star jump in sight and I am the strongest I’ve ever been! My heart rate isn’t sky rocketing as much cause I’m not training in my upper threshold all the time so I rarely get dizzy now when training! @thepotscoach has me on double the carbs I was on and significantly more protein! Which is about 500+ calories more a day! I’m stronger and faster and enjoy my meals again! 🙏 #mcas #pots #workout #iifym #macros #train #symptom #balance #gym #mastcell #dysautonomiaawareness #potsuk
June 2023 ➡️ March 2024 Between these two pictures I’ve had a massive shift in how I’m training. In June I was doing 5 HIIT sessions a week and long runs and dripping in sweat after every session and barely eating any protein or Carbs. My blood sugar was all over the place and I was having to wear a continuous glucose monitor. Fast forward to now I’m lifting heavy weights there isn’t a burpee or star jump in sight and I am the strongest I’ve ever been! My heart rate isn’t sky rocketing as much cause I’m not training in my upper threshold all the time so I rarely get dizzy now when training! @thepotscoach has me on double the carbs I was on and significantly more protein! Which is about 500+ calories more a day! I’m stronger and faster and enjoy my meals again! 🙏 #mcas #pots #workout #iifym #macros #train #symptom #balance #gym #mastcell #dysautonomiaawareness #potsuk
I know how overwhelming all of the information out there is and it is so difficult to know how to get started… But not anymore! Let me introduce: THE THRIVE GUIDE. A.K.A The ultimate FREE guide to get you started towards getting your life back. So that you’re not only feeling as though you’re surviving…but THRIVING in all aspects of life. These are tried and tested methods and the basic principles of all of my coaching. All you have to do is: ✨Hit the link in my bio and click on ”Download The Thrive Guide” to get out of your rut and start building the fundamentals to improving your health! ✨
Being chronically ill is undoubtedly harder for women. From getting a diagnosis, to getting the accurate treatment, women are usually dismissed by medical professionals. Usually under the pretext of “being hormonal” “being stressed” “being overemotional”, all things that would never be said to a man. Medical professionals owe us to do better, we put our lives in their hands and we deserve equal treatment 💜✊🏼 To all my chronically ill girlies, stay strong, keep fighting for what you believe in and for your rights. Our DM’s are always open #womenempowerment #internationalwomensday #march8th #potsuk #potssyndromeawareness #pots #dysautonomiaawareness
These are some of the most special wins. “I wouldn’t be in this position if it wasn’t for you.” I can’t even put into words how heartwarming it was receiving this message from one of my clients. I know first hand how debilitating that lack of independence of having a horrible chronic illness can be. The lack of freedom to do as you please and to not feel totally reliant on others. And I can’t even imagine how hard it must be to have kids in the mix as well. I have worked with so many parents over the years and almost everytime the biggest goal they have is to be able to do the simplest of things with their kids and family again. Having a chronic illness is far from easy and building up your strength to work to improve it is even harder… But regaining your independence is worth every single obstacle that you may face. I am so proud of this client and honestly so excited for more big goals that we are working towards this year. So if you’re ready to gain back your independence… Drop me a message or click the link in my bio to show interest in my coaching.
Same plates different POTS friendly meals! Beginning to trust the process and realising food = fuel 😋 @thepotscoach keeping me accountable💪 #whatieatinaday #protein #balance #recovery #potsiesproblems #potsuk #mcas #histamine #support #iifym #myfitnesspal #carbs #macros
Such a special morning with a few of @thepotscoach team 🩷. Being out for a meal with all of these women was such an honour. Each one of them have gone through terrible times with their health and I am sure that at some point, each of us were unable to even think about going out for food due to our health. So to all be sat together in London, words can’t even put into words how magical it was. I truly feel SO lucky to be working with such inspirational women every day and to be a part of their health journey. 🩷 All of us here have POTS (and more chronic illnesses) and I hope this gives some people some hope that there IS a better future out there. Your life doesn’t need to be over and the smiles in these pictures show just that 🥰.
🫶🏻 . . . . . #chronicillnessawareness #chronicillness #chronicillnesssupport #dysautonomia #dysautonomiaawareness #pots #potsawareness #potsuk #postralorthostatictachycardiasyndrome #autonomicdysfunction #autonomicnervoussystem #autonomicdisorder #bloodpressure #hearteate #spoonie #spoonielife #spooniewarrior #spooniecommunity #spoonieproblems #spoonies #spooniesisterhood #spooniestrong
When your mum’s bestie has to come and work from your home for the day and she brings her new pup.. it becomes the BESTEST OF days! ❤️ #chilledoutpups #fwenz #paws #dachund #doglove #medicaldetectiondogs #servicedogs #assistancedogs #puppylove #potsuk #labradorsofinstagram #labradorable #blacklabrador #labsofinstagram #puppylife #gundog #blacklabgundog #gundogsofinstagram
🔧What's in your toolkit? 💜This is mine, depending on where I am it varies too. If I'm at home I'll add fluffy blankets and lightweight clothing so I don't over heat but also don't freeze. Is there anything on here you use? Or something you would add to your potsie toolkit? Let us know! 💜This can also be adapted to any chronic illness, it doesn't have to just be for POTS. Take what you need and make it your own ✨️. #Pots #Potsie #PotsSyndrome #PotsAwareness #PosturalOrthostaticTachycardiaSyndrome #PosturalTachycardiaSyndromeAwareness #PosturalTachycardiaSyndromeCommunity #PotsWarrior #PotsSymptoms #PotsUk #PotsieLife #PosturalOrthostaticTachycardiaSyndrome #PotsFlare #PotsieToolkit #PotsFlareUpKit #PotsWarriors #Dysautonomia #DysautonomiaAwareness #DysautonomiaWarrior #DysautonomiaSucks #DysautonomiaCommunity (Image description: Set on a light purple coloured background. The text on this post is in white font and the headline reads as follows, Potsie Toolkit -this is underlined in white. The following text reads as follows, ●Compression gloves ●Compression socks ●Heat pad ●Migraine strips ●Ice packs ●Salty snacks ●Electrolyte drinks ●Portable mini fan ●Meds ●Mini salt packs There are images of items around the text on the post, a spanner which is grey, a mini fan which is pink and blue, a bag of pretzels which is brown and yellow, a salt shaker, and lastly a white heart that has a heart beat inside. End of description.)
Woke up feeling like I’d been hit by a truck overnight 🙏🏼 have felt this flare coming on for about a week now and knew it was just a matter of time but wow this is definitely the worst I’ve felt in a LONG while. Everything aches, I’m so dizzy, sitting upright makes me nauseous, my heart is beating out of my chest which feels like someone is sitting on, I can’t think straight, can’t decide if I’m too hot or too cold and the light/sound is bothering me. What a great day. However, I do love the validation I feel when my Apple Watch shows the heart rate spikes, taking the engrained “it’s all in my head bs” and proving that there is genuinely something going on. Anyway, I’m off to lie down again 🥄🥄 #spoonie #dysautonomiaflare #dysautonomiawarrior #pots #potsuk #potsawareness #health #chronicillnessawareness #applewatch
This was a comment put into the @thepotscoachapproach community group from one of my 1-1 clients, Rebecca. And I thought many of you would likely benefit from her story as well. Just like Rebecca, I know first hand what it’s like to have no hope. To feel like there is no way forwards. But it doesn’t need to be this way. Rebecca also went to her first rave this weekend since being ill and had the BEST time (I was even sent some videos 🥹). So if you’d like to help moving forwards and getting your life back then drop me a message or click the link in my bio to enquire about my coaching now! *I did crop out part of Rebecca’s post as I couldn’t fit it all onto the post*
The importance of consistency with POTS. I’m learning that with POTS you can’t take a day off thinking about it it’s always there but the impact it has on your life your in control Of. The days I try to ignore it are the days it often knocks me down (quite literally) the days I’m consistent and stick to the plan are the days that POTS takes the back seat! My 5 non negotiable each day are: 1. movement - since working with the @thepotscoach I’ve realised how important moving my body is. You don’t have to be dripping in sweat or even step foot in the gym every day but you have to get up, get moving and fight the urge to just remain sedentary! On a bad dizzy day going for a walk helps me massively! 2. Fluid - us potsies have reduced blood volume so we have to increase our fluid! I make sure I’m drinking atleast 3 litres of water a day! 3. Nutrition - Protein, Carbs and Fats are vital in every meal! The more balanced the nutrition is the better the day will be for symptoms! 4. Respect - Your body! Yes you may not be able to do what you used to do! But the more you respect your body the more it will be able to do! I’ve made this mistake a lot and pushed too hard at the beginning of my POTS journey which just kept putting me back! 5. Salt - especially important if you’re training - it’s going to help so much with increasing your blood volume and allowing you to retain fluid! Increased blood volume = less fainting/pre syncope. I’m trying really hard to keep myself accountable to each of these and since doing this I have seen a massive improvement in my symptoms thanks to @thepotscoach ! #pots #recovery #chronicillnessawareness #potsies #dysautonomiaawareness #potsuk #dysautonomiainternational #iifym #myfitnesspal #nutrition #bloodsugar #balance
⭐️ WE NEED YOUR SUPPORT ⭐️ To improve awareness and healthcare for people with PoTS, PoTS UK patron Cat Smith MP has tabled an Early Day Motion - and we need you to support this motion! Please visit the Latest News section on our website for further details, useful links and letter templates for you to campaign your MP: https://www.potsuk.org/parliamentary-campaign/ Please share, and ask your friends, family and colleagues to also email their MP’s - the more emails they receive, the more likely they are to take notice! #TheyWorkForYou #EarlyDayMotion #CatSmithMP #PoTS #PoTSUK #PosturalTachycardiaSyndrome #PoTSAwareness #TakeAStandForPoTS
How many of you have experienced self gaslighting? I certainly have..... I honestly think it's a mixture of guilt and not feeling believed/understood. For me anyway...can you relate? 🦓🦓🦓 #chronicillness #rareni #eds #zebrastrong #ehlersdanlossyndrome #posturaltachicardiasyndrome #nirdp #potsuk #chiarimalformation #edsuk #wheelchairlife #zebras
Those puppy eyes will get you everything Olive 🥺❤️ #medicaldetectiondogs #mdd #medicalalertdog #alertdog #assistancedogsuk #aduk #assistancedog #medicaldog #servicedog #dogswithjobs #dog #labrador #labradorxgoldenretriever #labcross #labxgr #ilovemydog #mydoghelpsme #chronicillness #olive #owingit2olive #dogsofinstagram #bestfriend #lifesaver #iloveyou #herodog #pots #potsuk
“Wanted and needed, my input is valued and respected as well as welcomed” “It provides me a way to feel like I ‘help people’ which is a core part of my identity” “Purpose and fulfilment” These are just a few quotes from our current Peer Support Volunteers. If you would like to join our team then please complete this short form and we will be in touch: https://www.surveymonkey.com/r/F3BXZ7M 💜 #PoTS #PoTSUK #PeerSupportGroup #PeerSupportVolunteers #VolunteerWithUs #HelpWanted
And 12 years later, I was proven I was right all along 🥱 take this as a sign to never give up advocating for yourself, no one knows your body like you 🫶🏻 . . . . . #pots #potsiesproblems #potslife #potsuk #posturalorthostatictachycardiasyndrome #chronicillnessawareness #chronicillnesshumor #chronicfatigue #spoonielife #spoonie
“How have you found coaching with Rosie?” These are the words of one of my amazing clients who wrote this in her 2023 reflection at the start of this year when we were setting goals. Interested in working with me? Drop me a message or click the link in my bio to learn more!
Pots is a form of dysautonomia. What is PoTs? PoTs stands for : Postural - Position of the body Orthostatic - Relating to standing upright Tachycardia- Fast heart rate Syndrome - A number of symptoms POTS is abnormality of the functioning of the automatic nervous system (ANS). The automatic nervous system (ANS) is responsible for controlling the things we don't usually think about. Such as heart rate, blood pressure, sweating, bladder control, digestion and stress response. A malfunctioning ANS is sometimes called dysautonomia. If you think you may have PoTs, please speak to your doctor and do a 'poor man's tilt table test' at home if you are able. This can help your doctor see if they agree with this as a possibility and refer you to the correct specialists. If anyone doesn't know how to do them or wants to know more - don't hesitate to get in touch and I can send some info over to you. If you know someone with PoTs, please be patient, ask them if they need anything and most importantly, research into the condition to understand it more. This will massively help your loved one as they will appreciate the effort in you looking up their condition. Stay salty 🧂 Keep hydrated 💧 Look after your spoons 🥄 Lots of love and hugs. Xxx Credit to 📸🖼 @ strongerthanpots for the post 💙💙💙 #potssyndrome #potsuk #potsie #posturaltachycardiasyndrome #potsawareness #posturalorthostatictachycardiasyndrome #potssyndromeawareness #staysalty #hydration #potsielife #potsiestrong #potsies #dysautonomia #dysautonomiaawareness #dysautonomiaawarenessmonth #dysautonomiawarrior #dysautonomiasucks #dysautonomiastrong #palpitations #chronicillness #chronicillnessawareness #invisibledisability #hiddendisability #notalldisabilitiesarevisable #spoontheory #sickbutinvisible #chronicillnesswarriors #invisibleillnesswarrior #spooniesisterhood #spoonietruths
Next week we’ll be running a PoTS UK LGBTQIA+ Online Peer Support Group 🏳️🌈💜 You can sign up via the PoTS UK website, as well as find details for all of our upcoming groups: https://www.potsuk.org/events/pots-uk-online-peer-support-groups/ We hope to see you there! 💜 #PoTSUK #PoTS #PosturalTachycardiaSyndrome #PeerSupportGroup #PoTSSupport #LGBTQIAplus
We recently asked if you’d be interested in purchasing a PoTS UK calendar for 2025 - and many of you said YES! 💜 We are now asking for photo submissions relating to December and January for the calendar. If you’re interested in taking part, please email your photo’s to [email protected] We can’t wait to see your submissions! #PoTSUK #PoTS #PosturalTachycardiaSyndrome #PosturalOrthostaticTachycardiaSyndrome #UKCharity #CharityCalendar #TakePart #SubmitYourPhotos
We are excited to announce the launch of the PoTS UK 2024 Survey 💜 This survey is for completion by people with PoTS or suspected PoTS, and parents and carers of someone with PoTS. PoTS UK are planning ahead and want to learn more about what YOU want and need so please provide as much information as possible. Your honest feedback is so important and by completing the survey, you will enable us to adapt and develop the services we are offering in order for us to give you the support you find most useful. You can find the link below: https://www.surveymonkey.com/r/CJRXCPW (A clickable link can be found on our Insta Story for the next 24 hours, and is available on our Facebook page). Don’t miss out on the opportunity to have your say and help shape the future for PoTS UK 💜 ** update: the last day to complete the survey will be 31.01.2024, thank you to all who have taken part! ** #PoTSUKSurvey #Feedback #HelpingUsToHelpYou #PoTS #PoTSUK #UKCharity #PosturalTachycardiaSyndrome
Happy New Year from all at PoTS UK 💜 We asked you what your hopes were for 2024 - you can see some of the answers in the slides above. Please comment below your hopes or plans for the new year 👇 #HNY #HappyNewYear #PoTS #PoTSUK #PosturalTachycardiaSyndrome #NewYearHopes
A revolutionary way to treat POTS. This course will transform the lives of many and we want YOU to be part of it. More details to come, but for now - sign up for exclusive content and the chance to win early access to the course. Link in bio.
A theory to move away from in the new year. While I understand completely that this can have its place - in most of the people that I’ve seen, it often becomes detrimental to being able to move forwards to improve their health. If you have POTS or chronic fatigue - you CAN get your life to a point where you won’t always be limited by your energy and symptoms. But to do this, You have to first believe this is possible. Want me to show you how? Drop me a message or click the link in my bio to learn more about my coaching.
Getting sick when you already have a chronic illness can be scary. Because not only do you have the bug to contend with, more often than not your own health issues will flare as well. And it can feel like you’re being sent back to square one. The past week I have been sick with the flu as I have shared on my stories… And for the first time in years, I have felt like I am going to faint in the shower, got dizzy on a short walk and have had horrible palpitations. Considering that my POTS is barely noticeable these days, until this illness appeared…it can be really scary to experience these symptoms again… Symptoms that I knew all day, every day for years of my life when I was first poorly with my chronic illnesses. It would be easy to catastophise, to see this as being set back to square one and that all my hard work to get my health to this point has been for nothing… But we all know that this isn’t the case and within a week or so of getting back to training, once I’m better rom this illness - I won’t be feeling any effects of it. Sometimes set backs do happen but panicking about them achieves nothing. Illnesses are part of life and there IS a strong likelihood that they will also exacerbate your health issues as well… But there is no need to worry as this is temporary. Along with any symptoms that you may feel while you’re sick. You can do everything right and this will still happen, your health may still flare. But will will pass. Want help building up your strength so that you can bounce back quickly from illnesses and learn how to not let one illness lead into months of flares? Drop me a message to learn more about my coaching!