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@dizzyissy__

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living w hEDS&co
audhd
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Stop trying to show off, EDS! #eds #heds #ehlersdanlossyndrome #chronicillness #invisibleillness by @dizzyissy__
The only perk of having hypermobile Ehlers Danlos syndrome is that some of us look a lot younger than our real age, thanks to our connective tissue differences! ✨ #ehlersdanlos #eds #heds #hypermobile #pots #chronicpain #chronicillness #spoonie by @dizzyissy__
Do you ever wonder why those with ME/CFS experience brain fog, memory problems, profound fatigue that doesn’t improve with rest, sleep disturbances, chronic headache/migraine or anxiety and depression? You need to learn about the glymphatic system, which is the brain’s waste clearance mechanism. It’s responsible for removing toxic proteins (like beta amyloid and tau, which are linked to Parkinson’s and Alzheimer’s disease), lactic acid, excess neurotransmitters like glutamate, and stagnant fluid from the brain. Some fellow Australian scientists published this study, which showed that in ME/CFS, the brain’s glymphatic system is impaired, leading to harmful waste build up and neuroinflammation. Worse sleep was associated with more glymphatic system impairment. This is more validation for the difficulties we experience, and I’m really proud of these Australian researchers. https://doi.org/10.3389/fnins.2026.1875420 #mecfs #mcas #chronicillness #pots #heds by @dizzyissy__
Today is Postural Orthostatic Tachycardia Syndrome (POTS) awareness day 🫶🏼 One of the worst parts of living with POTS isn’t even the disability it causes or the amount of money you have to spend on electrolytes. It’s the rampant misinformation and harmful dismissive attitudes that the general population have towards this diagnosis. People on the internet believe that this condition only affects young, lazy white women, and that if they can make TikToks, they should be able to work. I want all of you to know that I believe that you can’t work, and having the ability to record a video is NOT equivalent to being able to leave the home for 8 hours and manage a full workday. This ignorant attitude is causing so much harm to our community, and shows a huge lack of empathy and critical thinking skills. There’s literally so many research articles providing evidence of how significant the disability from POTS can be, and when you get people thinking they know more than scientific evidence, we have a big problem as a society. Anyway, rant over, please share these slides wherever you can to help educate and raise awareness for this condition! Love to all my POTSies!! Don’t forget to wear your compression socks today 🫂 🧦 🧂 #mecfs #pots #dysautonomia #heds #mcas by @dizzyissy__
Welcome to part 3 of my series about managing life with chronic illness & ADHD! Remembering to take medication seems simple enough, but when you have ADHD, there are so many factors at play that make it no easy task. -object permanence issues aka “out of sight out of mind” -following complicated medication schedules is hard when you struggle with planning and remembering -initiating boring tasks is difficult (medication is boring to me) And more. So, use a weekly am and pm med organiser, so you don’t have to guess if you took your meds or not. Bedazzle them so they are more visually stimulating and give your brain a lil dopamine hit when you see them. You’ll be more likely to use medical tools that are cute. And please, remember to take your cromolyn 30 mins before ingesting anything else, if that’s what your doctor has prescribed for you. Don’t forget to take it and start your day late. If it lives next to your phone on your bedside, it’ll be harder to miss. Don’t let yourself get out of bed without taking your cromolyn first. #chronicillness #invisibleillness #heds #mcas #pots by @dizzyissy__
Welcome to part two of my series about managing chronic illness & ADHD! There’s nothing quite like the panic of being called by an angry receptionist at a specialist’s office asking why you aren’t there yet 😖 and it makes it even worse when you’ve waited 6 months for the appointment, or have to pay a cancellation fee. I sit down in the waiting room for an extra 5 or so minutes after paying for my appointment to do all the admin and scheduling required before I leave. I also prefer to record conversations, as well as write down a list of questions I want to ask before I arrive. Do you do any of these things? #chronicillness #invisibleillness #pots #heds #mcas by @dizzyissy__
It’s dysautonomia awareness month! 🧂🫀🧠 Compression is a simple tool to help those with dysautonomia, and it can reduce symptoms such as lightheadedness, presyncope, and tachycardia, by gently squeezing blood vessels to increase blood flow, and therefore oxygen, to the heart and brain 💓 Experts recommend leg and abdominal compression, ideally starting at 20-30mmHg, but mostly stress that the best compression is in the form that you can tolerate, so that you actually wear it. Personally, I get enough relief wearing 15-20mmHg knee high compression socks. I’ve tried thigh highs and abdominal compression, but they both cause me pain. If you can tolerate them and your doctor says they’re safe for you, go for it! I’m wearing gifted socks from @drwoofapparel What kind of compression works for you? #pots #dysautonomia #mecfs #eds #chronicillness by @dizzyissy__
Happy ADHD and dysautonomia awareness months! Follow along for a mini series with useful tips & tricks for managing chronic illnesses & adhd at the same time 💕🥺 #chronicillness #invisibleillness #heds #mcas #pots by @dizzyissy__
I’m so sorry if you had to do this test #pots #dysautonomia #mecfs #mcas #heds by @dizzyissy__
If quercetin and luteolin didn’t work for you, this could be one reason why (not medical advice, this was just my own experience). I felt so disappointed about having some MCAS symptoms resolve but my brain feeling so loud and not able to shut off, so I stopped taking it and cromolyn worked a lot better for me. #mcas #pots #mecfs #chronicillness #heds by @dizzyissy__
The paper reviewed six years of data using the broader Consensus-2 diagnostic criteria and here are some key takeaways: -Stricter Consensus-1 rules (requiring a massive, usually impossible-to-catch tryptase spike during a flare) can cause underdiagnosis (this personally happened to me when I first saw an immunologist, an Integrative GP was the only doctor trained in the consensus 2 criteria I could find) -Many MCAS patients never show significant tryptase elevations but still experience severe multi-systemic physical symptoms -Validating MCAS through clinical symptoms and positive treatment response changes a patient’s quality of life, often after decades of medical neglect -The fear that broader criteria would lead to “overdiagnosis” has not been realised #mcas #chronicillness #invisibleillness #mecfs #eds by @dizzyissy__
I am one of the many individuals with ME who have been met with dismissive comments from friends, family members and medical doctors about my illness. Most of these comments imply that it’s a psychological illness, we need to ‘try’ harder, and that we are simply depressed and tired. Recent research has identified 5 key genetic pathways associated with ME/CFS that may support the understanding of how it is a multi-systemic physical illness: * HSD11B1: Disrupts cortisol, hormones, and immune function. * SCGN: Impacts insulin and may cause autonomic instability and sensory overload. * NR1H3: Triggers chronic immune system activation. * SLC18A1: Lowers serotonin and dopamine, which may cause severe brain fog. * MYRF: Damages the protective coating of brain cells, which may lead to muscle weakness and neurological symptoms. When these genetic variants cluster together, they create biological bottlenecks that disrupt your entire metabolism. It is time for doctors to listen to us and read this important research, so that we can get the validation and care we deserve. #mecfs #chronicillness #invisibleillness #pots #mcas by @dizzyissy__

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