#dysautonomia awareness challenge

[headpainmigraine]

LOL, that Dysautonomia Awareness Challenge has gone just as I expected - nothing since the 4th.

Anyway, here's Wonderwall

5) Day in the life with Dysautonomia

This one is difficult, not just because dysautonomia is a dynamic condition, but also because I have 500 other things going on that impacts my day in similar ways.

I can tell you that it means I can't stand for very long, even indoors.

I end up sitting on the floor when in conversation with someone, unless there's a chair nearby. If I go out (ha) that used to mean sitting on the filthy shop floor, but now I have a wheelchair. Otherwise I have to hang onto my sister or my mum on short trips outside.

The dizziness and faint feeling makes me feel weak and feeble, which is REALLY annoying. A spell can hit at any time, so I have to either do little projects I can drop in the middle without too much stress, or have someone assisting who can finish the task/get it to a stopping place without me.

Can't eat, tremors. Can't stand, tremors. Can't hold still, tremors.

Can't go in the back garden for any length of time without making sure there's a chair out there or bringing my rollator.

No spontaneity. No independence.

This question is depressing, next!

6) Your medication regimen.

I take a few meds, but the one I take for my dysautonomia is ivabradine. One in the AM, one in the PM, to slow my heart and hopefully help with the palpitations.

Eh, so-so. I certainly get the side effect of light suddenly glaring when I move outside of a dark room.

Otherwise, I used to drink a lot of water, but fell off that wagon. I have compression stockings, but only under the knee because I can't manage the full tights version I was supposed to wear.

All in all, my pandysautonomia isn't really being managed by meds.

7) Your favourite products to manage your symptoms.

Products? Compression socks help, but I hate them. I like Lucozade Sport for electrolyte replenishment, but it's too expensive for me to have a constant supply.

I like 4Head strips for when my temperature regulation goes out of whack.

Uhhhh… it's not really managed, tbh.

8) Favourite way to hydrate.

Pepsi Max.

But no, I like the cute water bottles and all, but I don't have the spoons to wash them out and they get funky and then I don't use them.

Lucozade Sport, again, is good, but, again, it's too expensive for me to rely on that alone.

I got electrolyte salts, but I think they triggered a migraine.

9) Your "saltcuterie" board/salty snacks

UGH, this one pisses me off.

For fuck's sake, dysautonomia isn't just POTS, and it isn't just POTS with low blood pressure, either.

People with high blood pressure, or just all over wacky blood pressure, can also have dysautonomia. Hell, can also have POTS.

And high salt diets are contraindicated for people with high BP and dysautonomia.

I feel like shit like this is just quirkifying dysautonomia into a collection of hashtags and memeable pics.

And what's more, leaves huges groups of people who DO have POTS or other dysautonomic conditions thinking that they can't possibly have POTS because they don't have low BP like the entire internet tells them they need in order for a diagnosis.

Seriously, you can't diagnose this kind of thing online.

You can't 'informed self-DX' dysautonomia.

Can you suspect it? Sure. And if doing all the 'typical' POTS things like increasing salt in your diet and wearing compression socks helps, go for it.

But you'll never know if you actually have POTS or if something else is causing your symptoms, whether it's another form of dysautonomia or something else altogether. Like just having low blood pressure.

And I know that's easy to say, like seeing a doctor for this is simple when it's not, but seriously. Some things you just can't diagnose yourself online.

10) Favourite pair of compression socks

I hate them all. I was supposed to get a pair prescribed, but my GP and pharmacists are all too incompetent and stupid to understand how to do so, so I just bought the right strength myself off Amazon.

THEY SUUUUUCK. I struggle to get them on, they aggravate my dermographia and I can't regulate my temperature properly in them because they make me feel hot all the time.

Sucks.

11) Your mobility aids.

I use a rollator inside the house sometimes, in places like the kitchen where I need to stop and talk to someone but don't want to sit on the cold, hard floor. I use it outside in my back garden so I can walk around a little but not have to crouch or sit in the grass, given that I can't just stand there for very long.

I used to have a manual wheelchair, but I don't have the strength to push myself, and I don't have the stamina to be able to do so. I go a chair BECAUSE I don't have the stamina to stand, and I wanted to have a little left over when I got back home so that a grocery shopping trip didn't leave me in bed for the next 3 days.

The manual chair wasn't doing that so I switched to a powerchair and it's wonderful. Yeah, there are drawbacks (battery life, dead-end corridors, narrow doorways, manouverability, STEPS FOR NO REASON) but I can go to Tesco or the garden centre and buzz around for an hour or an hour and a half and come home and be tired but still able to sit upright.

12) How you manage a flare

Literally, by dropping to the floor. If I'm having a really symptomatic day, I'll either spend it in one place (my bed or the couch usually) or I'll make really short trips of a few steps at a time and then sit to rest before continuing.

Hate it.

13) The thing that has helped me the most since diagnosis is…

Diagnosis it self has helped with the imposter syndrome A LITTLE.

It's helped me understand what's going on with my body in relation to my other health issues more as well.

I can tell people I have pandysautonomia without uhmig and ahing and adding footnotes to it, and it's helped me when telling benefits that no, I can't stand actually.

14) Tips for cooking/cleaning with dysautonomia

I can't do either. Maybe pick up little bits of rubbish and put them in the little bin in my room, but I can't cook for myself and I can't do any large cleaning duties either.

For smaller tasks, I'd probably say, wait for a day where you've had a rest, where you know you can rest afterwards (for the next day or two), you have no big trips out or mentally draining tasks coming up, etc.

Break the task into small parts and see what you can do while sitting down, leave those for a bad day.

Do little and often, if you can.

Don't expect yourself to be able to complete a task all at once. Make small, achieveable goals.

But mostly, have a carer. IDK how I'd manage without my mum. I'm not going into a rant about the quality of life disabled people have at higher expense in order to just live, I'm not.

15) Managing dysautonomia at work/school

Lol, I can't work like this. I was fired from my job of 10 years for my migraines, and I developed pandysautonomia a few years later. I can barely spend time out of bed and downstairs most days, I physically can't work. What are you, the DWP?

16) Favourite dysautonomia-friendly hobbies/activities

WRITING!

Writing most of all.

Puzzle app on my phone

Plants are good, because they only need a little sporadic care, depending on what you get, and research is sometimes something I can do in a flare, depending on brain fog.

Keeping inverts. Tarantulas are good because they need infrequent feeding and really simple care, bioactive enclosures that don't need deep cleaning like a hamster cage or litter box might.

Inverts of all kinds, really, except the tiny ones that need tiny food because flies are a pain in the butt to work with.

Reptile keeping is also pretty easy, depending on the reptile and how you keep them. Surprisingly low maintainence, but it's also really easy to do in short bursts at infrequent intervals.

I like artistic pursuits, but they're hard in a flare up when the tremors get bad and I stop being able to lift my arms.

At the moment my favourite hobby is planning out my fish tanks, also pretty easy if you've got help for water changes, and really nice if you're having a migraine but can't sleep.

17) Your go-to comfort show/movie during a flare.

Adventure Time.

Generation Kill.

My Neighbours the Yamadas

There are others (Always Sunny, Over The Garden Wall, Inside Man (not the David Tennant one), Knightmare (old TV show on YouTube), Animals of Farthing Wood, Bob's Burgers, Fight Club, various anime) but those are the main three.

[micah-has-fallen]

October is Dysautonomia Awareness month and Vitassium has a 31 day challenge. And I want to participate but lack consistency so I’ll prob do them in clumps. Anyways here’s a screenshot of the list :)

See y’all in a few days!

(I’m probably doing Inktober too but that won’t be posted here lol, it’ll be the month of consistency challenges)

[covid-safer-hotties]

Also preserved on our archive (Daily updates!)

The topmost link includes a video of the news segment

By Destiny Meilleur

Medical researchers at the University of Calgary say a condition affecting autonomic bodily processes — those that occur automatically, such as heart rate, bladder function and sweating — is frequently found in people diagnosed with long COVID.

The condition is known as dysautonomia, an umbrella term for a group of related conditions. Support networks for those who suffer from it are working to raise awareness throughout October, which has been deemed Dysautonomia Awareness Month by the advocacy group, Dysautonomia International.

According to research by Dr. Satish Raj, a cardiologist and expert in autonomic health conditions at the University of Calgary, as many as 30 per cent of long COVID patients also meet the criteria for a condition called POTS, a form of dysautonomia known as “postural orthostatic tachycardia syndrome.”

According to Dysautonomia International, other studies have put the figure at between 70 per cent and 90 per cent.

The challenge is that the symptoms of the condition can be easy to dismiss. “Who likes to sit around and talk about their sweating,” notes Dr. Raj. “No one does that… These are just the background things that are useful for keeping you alive.”

Rashmin Hira, a PhD student at the Universty of Calgary and long COVID researcher, adds, “Unfortunately, a lot of people do get told that it’s just anxiety.”

That’s why raising awareness through events such as Dysautonomia Month are important, says Lauren Stiles, president and CEO of Dysautonomia International.

“(It) is one way that we help people get diagnosed faster,” Stiles says. “It’s also really important to raise awareness so that we can interest government and investors and other people to fund research in this group of diseases.”

When it comes to POTS, symptoms can include lightheadedness, nausea, blood pooling and a high heart rate. The most common treatments include increase intake of fluids and salt and, if possible, recumbent exercise.

But even if the symptoms and treatment of POTS appear subtle, it is nothing to take lightly, Stiles says. Thirty per cent of people with the condition rely on a wheelchair to get around and many others are unable to work.

“There are millions of people who really, really suffer from autonomic disorders,” Stiles says. “We want to build support and compassion for these patients in their communities so that they can get access to the resources that they need.”

Dysautonomia International is encouraging those who want to show support during the awareness month to share information with friends and family, participate in events, raise funds and wear a turquoise scarf.

[prettyboychik]

7. Your favorite products to manage your symptoms

If by products you mean, like, shit I buy regularly to manage my POTS . . . pedialyte is pretty great bc dehydration exacerbates the POTS symptoms. But besides that, I don’t really buy anything regularly to help me manage it because I don’t think there’s anything I can buy that would help me manage it (also bc I’m poor).

8. Favorite way to hydrate

I get water flavoring powder and add it to my water, then drink that. Sometimes I’ll add salt bc it makes it taste better. If its a really hot day or I’m feeling really dehydrated, I’ll drink a ton of pedialyte. Idk if its hydrating or not but I love juice. Just don’t get it much bc it’s expensive. Hydrations not super important so I don’t have a ton to add to this.

9. Your “saltcuterie board” / salty snacks

I don’t eat a ton of salty snacks. Bread with butter and salt is pretty nice though. I’m beginning to get the sense that this is less of a “dysautonomia awareness challenge” and more of a “neuropathic POTS awareness challenge” tbh bc — from what I can tell — salt is not part of treatment for hyperPOTS and some other forms of dysautonomia.

10. Favorite pair of compression socks

Say it with me folks: “not all dysautonomia is neuropathic POTS”. That being said, I do have some knee length skull pattern compression stockings, I bought them in a desperate attempt for something to help and found that they do alleviate some of my joint pain, but don’t do shit for my POTS.

11. Your mobility aids

I currently have 2 canes (a purple one and a folding blue one), a blue rollator, and a folding manual wheelchair (Offcarr brand, ministar model).

I don’t use anything at home, my apartment technically has enough room for my wheelchair but its so small that its a pain in the ass. I do have a shower stool I use, and I sit on a chair to cook. I used to use my wheelchair around the house when I lived in a co-op.

I rarely use my cane, mostly only to go out and get the mail every so often, but I use the folding blue one to get down the aisle of a plane if I’m flying somewhere. I use my rollator a couple times a week if I’m going on short walks around the neighborhood with my partner or maybe getting something at the grocery store next to my place (have to go up a flight of stairs to get to it, so my bf will pick up my rollator and carry it up the stairs. If I’m on my own, I go the long way in my wheelchair). I also use my rollator for doctors appointments (even though I feel the effects of that poor decision nearly a week later) because I think I’d get judged poorly if I went in my chair. I use my manual chair for pretty much everything else though if I’m leaving the house. Job interviews, going to the library, going to the synagogue, etc.

I’m hoping to get one of those lightweight folding electric wheelchairs soon so I can actually navigate the area around my apartment. Downtown is flat enough that its not tooooo much trouble to navigate in my manual chair, but the area around my apartment and the route I take to the synagogue has so many hills that my partner needs to push me half the time. I know its fucking up my shoulders, so I’m hoping to get a power chair sooner rather than later.

That being said, typically a wheelchair is not good for POTS iirc. I use my wheelchair largely for my other issues, and do my best to avoid deconditioning. If POTS was the only issue affecting my mobility, I would probably just use my rollator most of the time.

12. How you manage a flare

I just lay down and wait for it to be over, which can take a pretty long time.

13. The thing that has helped me the most since diagnosis is

Dealing with the comorbid iron deficiency has been the only thing thats helped the POTS specifically. My doc sucked so my POTS has been untreated this whole time.

14. Tips for cooking/cleaning with dysautonomia

Do whatever you can sitting. If cooking, gather all the bowls and ingredients and measuring stuff in one go and put it at the workstation so you don’t have to stand up and get shit constantly. I try to also keep most of my cooking and cleaning supplies that I use frequently around eye level so I don’t have to reach up or down to get stuff (both make me dizzy).

15. Managing dysautonomia at work/school

Lmao I dropped out and I’m unemployed so I am very much not the person to be asking about this. I didn’t do anything special to deal with my POTS when I was working and in school, nothing I could do that would help it that I wasn’t already doing for my other conditions. I did make an effort to stay hydrated though, because I was living somewhere pretty hot and dehydration doesn’t mix well with POTS.

Just saw this, thought I might as well do it, can filter out “#dysautonomia awareness month challenge” if you dont wanna see it. might do it in chunks every couple days / every week so that I’m not reblogging it too often (and bc I know there’ll be days I forget)

Gonna do the first couple all in one go bc I’m starting late

1. The type of dysautonomia you have

I have hyperadrenergic postural orthostatic tachycardia syndrome, aka hyperPOTS. POTS is essentially that your heart rate shoots the fuck up when you sit or stand up, which can cause you to feel dizzy, get confused, faint, etc. Also comes with other fun symptoms like brain fog! Why this happens is different for different people, and POTS can be categorized into subtypes based on why its happening. You can often have traits from multiple subtypes at once. The subtype you hear most about in the POTS community tends to be neuropathic / partial dysautonomic POTS, its the most common subtype. There’s also hypovolemic POTS (where you don’t have enough blood in your body I think?) and secondary POTS (where you get POTS because of another condition like diabetes or lyme). IDK exactly how neuropathic POTS works, it think it involves nerves or blood vessels not working right, but I know its different enough that I can’t relate to most of the POTS community because of it. HyperPOTS tends to come on gradually, while neuropathic comes on pretty abruptly. Hyperadrenergic POTS happens directly because of a malfunction in the autonomic nervous system, instead of the ANS malfunction happening because of another cause (which I think is the case for neuropathic POTS?). This “malfunction” in hyperPOTS means that my brain dumps adrenaline into my body. This causes my blood pressure to go sky high whenever I stand up (in most people, blood pressure drops a little when they stand). It also causes my heart to race, causes me to get dizzy, and can cause me to pass the fuck out or fall down. Unfortunately, hyperPOTS is the hardest subtype to treat, and a lot of the stuff you hear as “how you can help manage POTS at home” doesn’t work for hyperPOTS (aka water, salt, compression, exercise). Treatment for hyperPOTS is pretty much just medication, but it can be hard to find the right medication or dosage, and often you need to change the doses over time. Also you’re supposed to avoid SSRIs, SNRIs, and NRIs (which are the classes a ton of antidepressants fall into) but I haven’t heard about this bit very much so idk. (disclaimer: I’m not a medical professional, I’m basing this off of what my doctor/specialist told me and the papers I have read on the subject, I could be wrong. I also don’t engage with the POTS community online at all so what I’m saying could go against whatever the common understanding is of POTS / its treatments / the subtypes / whatever in the community ).

2. Your diagnosis story

For pretty much as long as I can remember, I’ve gotten lightheaded when I stand up. I remember being pretty young and having to lean against walls or sit down pretty frequently because I stood up. I attributed it to my low resting heart rate and low blood pressure (my mom and brother also have low / low end of normal blood pressure and heart rates). When I was maybe 13 my doctor noticed the low resting heart rate and blood pressure, I told him about how I got dizzy standing up somewhat frequently, and he told me to take my time standing up. I was a very active kid who couldn’t be bothered to take 10-15 seconds to go from laying to sitting, and then another 10-15 to go from sitting to standing, and then another 10-15 to go from standing to walking, so I just didn’t. Idk if I met the criteria for POTS back then bc I never bothered checking my heart rate, but regardless. It really didn’t impact my life very much. Fun to note that hyperadrenergic POTS tends to come on gradually and has a genetic component (idk if thats all the time or just some of the time though. I’m the only one in my family who definitely has it, but theres a chance my mom could).

Anyways I started experiencing a host of Mystery Symptoms in the summer of 2020, and they got significantly worse (and new ones started) around fall of 2021. One of the symptoms I was experiencing was that my usual lightheadedness became more frequent and so bad that my body would just give out and I’d collapse onto the floor. Luckily I remained conscious through the whole thing and had just enough control of my body to not hit my head. I went to my doctor about it, she told me to drink more water (throughout the appointment I was drinking out of a large water bottle, I already kept myself pretty well hydrated :/). She ran a couple tests, saw that my iron was a bit low, and told me to take some iron supplements. That helped me get to the point where I wasn’t collapsing nearly as much. However all the other symptoms of Whatever The Fuck was happening still remained, and I was also still pretty dizzy, so she referred me to a specialist.

The specialist was. Not fantastic tbh. However he did test me for POTS, and found that my heart rate shot up pretty high, as well as my blood pressure. For a diagnosis of hyperPOTS, your systolic blood pressure needs to rise by at least 10 mm Hg when you go from laying to standing (+ you gotta have the general POTS criteria). For most people, it stays the same or drops a little. Mine shot up by about 30 mm Hg and I met the other POTS criteria, so it was pretty clearly hyperPOTS.

His theory is that I had hypovolemic POTS (aka not enough blood in my body, which caused POTS symptoms) as a child for a long time and this trained my brain to dump adrenaline into my body whenever I stood up or changed positions in order to keep me upright and conscious. I got older I got my blood volume up to normal, but by that point my brain was so used to dumping adrenaline into my body to keep me going that it just does that permanently. Also long term childhood stress and trauma made my brain learn to dump adrenaline into my body as well. And then stress / catching covid / whateverthefuck was the catalyst that sent it from “mildly annoying and not disabling” to “something I need to account for when doing day to day activities”. I’m not entirely sure thats what happened because I don’t think I had any trouble with blood volume as a child and I don’t think my heart rate shot up as a kid (the way it needs to for a diagnosis of POTS), and also I was experiencing Symptoms with gradually increasing frequency before the Fuckening that was Fall 2021, but who knows.

So he ended up diagnosing me with hyperPOTS as well as something else that I don’t totally agree with. While his knowledge of POTS and the things he was ruling out for me or diagnosing me with seemed pretty extensive, he also sucked at listening to me or actually treating me. But that whole story belongs in the answer to day 20 I think (day 20 is worst interaction with a healthcare provider).

3. How long it took you to get diagnosed

This is a bit tricky to answer because it depends on what you would consider the “start date”. HyperPOTS comes on gradually, so there was no definitive time I can point to and go “oh if a doctor had seen me at this exact moment they could’ve diagnosed me with hyperPOTS, when they couldn’t’ve the month before.

If its from when I first started having symptoms (and the specialist was right and I had hypovolemic POTS as a kid) then thats over 12 years.

If it’s from when the POTS symptoms started getting to the point where they interfered with my life in a significant way, then only about a year.

I’m still trying to figure if the specialist was right or not about the other thing, and its been over three years since the symptoms started.

4. Your most bothersome symptom

When it was happening, the falling down bothered me the most. It’s hard to know which of my symptoms are hyperPOTS and which are whatever the fuck else is wrong with me, but the constant brain fog and the dizziness + fucked up vision whenever I stand up is not fun.

5. Day in the life with dysautonomia

Tbh the other thing disables me far more than the hyperPOTS does so my average day is far more affected by it. I don’t do the day to day lifestyle changes most people do for POTS because the only treatment for my subtype is medication (compression, salt, water, and exercise don’t help), and I don’t currently have a doctor. I do try to salt my food a good bit and drink a ton of water and exercise as much as I can, but thats just because I like salt and want to be as healthy as possible. Adapting my life around hyperPOTS mostly just consists of being real careful if I’m standing up on a bad day, being careful when I lift my arms above my head (to grab stuff off a shelf, pull the stop request string on the bus, etc), and using a shower stool. I also use a wheelchair whenever I leave the house, which is heavily discouraged for POTS generally because its super important to avoid deconditioning and to make sure you exercise, but the other shit I’ve got going on makes it necessary.

6. Your medication regimen

I’m not on any POTS meds, but I take medications for other stuff. I’ve heard magnesium is supposed to help POTS, I take it to counteract the side effects of a non-POTS medication I’m on. Haven’t noticed it help my POTS symptoms at all though. Probably is supposed to help for neuropathic POTS.

[beautiful-flutey]

So I saw this and went back and forth on if I was going to do it. I have decided I want to so to start off strong here are days 1-4.

1. Type of Dysautonomia you have: I have Postural Orthostatic Tachycardia Syndrome or POTs. This is a condition in which upon standing up from laying/sitting my heart rate jumps at least 30 beats per minute OR rises above 120 on prolonged standing.

2. Diagnosis Story: I feel like I had some of the “lesser” symptoms for awhile before this but wasn’t too worried about those. But one day my mom was doing my hair and I passed out. We went to the doctor, then to a Neurologist and a Cardiologist. The neurologist couldn’t figure it out with the tests done, the Cardiologist followed a sneaking suspicion did a tilt table and diagnosed me.

3. How long did it take to get diagnosed: I’m one of the luckier POTs people in that my diagnosis came within 1-3 years of the initial main symptom (passing out)

4. My most bothersome symptom: Probably my Presyncope. Because I have to sit or lay down and stop what I’m doing. And I never know if it’s the day that it will go further and become full syncope meaning I passed out. I’m fine if a pass out but I’m still terrified of it.

[Image Text: Dysautonomia Awareness

Month Challenge

Share your responses every day in October on your grid or story with the hashtag #VitassiumChallenge.

1. The type of dysautonomia you have

2. Your diagnosis story

3. How long it took you to get diagnosed

4. Your most bothersome symptom

5. Day in the life with dysautonomia

6. Your medication regimen

7. Your favorite products to manage your symptoms

8. Favorite way to hydrate

9. Your "saltcuterie" board/salty snacks

10. Favorite pair of compression socks

11. Your mobility aids

12. How you manage a flare

13. The thing that has helped me the most since diagnosis is...

14. Tips for cooking/cleaning with dysautonomia

15. Managing dysautonomia at work/school

16. Favorite dysautonomia-friendly hobbies/activities

17. Your go-to comfort show/ movie during a flare

18. Your support system

19. Best interaction with a healthcare provider

20. Worst interaction with a healthcare provider

21. One misconception I want to debunk is...

22. Dysautonomia co-morbidities

23. How you deal with heat intolerance

24. Your morning/nighttime routine with dysautonomia

25. What's in my bag, dysautonomia edition

26. Dysautonomia has taught me...

27. Advice for anyone who is newly diagnosed

28. What you wish others knew about having dysautonomia

29. What others can do to support the dysautonomia community

30. What Dysautonomia Awareness

Month means to you

31. Anything else you want to share?]

[rat-in-the-window]

October is Dysautonomia Awareness Month and I'm catching up on the prompt challenge.

Day 1: type of dysautonomia you have

_ I have POTS (postural orthostatic Tachycardia syndrome)

Day 2 and 3: diagnosis story and how long it took to get diagnosed.

I technically diagnosed myself, I've been having symptoms for over ten years (more than half of my life) and I've finally started researching it - finally when I was in nursing school I learnt about POTS and brought it up with my GP. Finally after three years, actively searching for a diagnosis I found a doctor who took me seriously and diagnosed me.

[potsiepumpkin]

Dysautonomia Awareness Month Challenge Day 4

What’s the most bothersome symptom?

It’s a tie between presyncope episodes, and frequent urination.

I experience both of these multiple times a day, and when my head doesn’t feel like it’s gonna pop off and fly away, due to lack of blood flow, I urgently have to go to the bathroom every 30 minutes at this point.

I have other serious and bothersome symptoms, but I chose the two that happen the most often multiple times throughout the day.

Here’s my heart rate just getting out of bed this morning. I’ve done nothing but stand up.

[bursting-at-the-seems]

I am 28 years old and I am 5 foot 10 and wear a size 20. I work with a personal trainer, I don't eat a lot, and I do my best to eat mindfully. I also have several recently diagnosed chronic conditions, Autoimmune, Dysautonomia, and endocrine, though the symptoms have been around most of my life. These are genetic conditions and they are not caused by my weight.

They believe if I lose weight they will go away.

Growing up my family always made comments about my weight as well as others. Most everyone in my family is over weight. I would run miles every day in high school and skip meals and still hear how i needed to lose more. I became the DSM5 definition of bulimic, made easier by other abuse going on in my life.

Now, I am a happy person and happy with myself. I'm not at the weight I want to be, but I don't discuss my weight with anyone outside of my doctor. If my family asks I tell them I am doing my best and discuss my medical condition challenges. They have offered gastric bypass and lap band surgery unsolicited. At a party someone brought up my weight to try and help me and in that I found out people have been discussing it behind my back out of concern. So I sent this text:

Hey family,

I have heard for quite some time that there have been conversations about my weight with others in the family, though not to me. Recently, this has come to my attention, again.

My doctor and I are both aware and in agreement that my weight is not our primary concern. This is due to my other medical conditions taking priority, especially as my weight did not cause these genetic conditions.

Despite this, I still consider it a priority and I've seen progress: weight loss, more muscle, less body fat, smaller measurements. This is because:

• I have met with professionals (nutritionists, doctors, therapist) to review my eating habits, avoid disordered eating, and how we can manage my conditions and side effects impact on my progress.

• I work with my personal trainer and we track my progress. Also, I'm adding more physical activity as I can.

While appreciate the love and concern from everyone, I do not want my weight to be a topic of conversation when I am not in the room. I hope you will all respect that. There is no need to respond to this message as I trust that any of my family, whom I truly love and who I know love me, will not be discussing my weight amongst each other ever again.

Thank you

In response I had two people get very upset. Saying that I should have just let it go. That people talk because they care. That's what a family is. That they are worried they will need to bury me. That my text was dismissive and uncaring. That it's not about my looks (for some) I told them these conversations are hurtful and as they don't know my weight it must be based of my looks. I was told when I really want a husband and kids I will lose weight, I won't be truly happy till l do lose weight. I told them, aside from this I am happy, I my weight isn't a requirement to happiness or marriage, and that their conversations make me feel ugly and want to go back to disordered eating. That it's hurtful when I am doing everything I can, they know I didn't eat a lot, and I'm fighting my body in other ways. It makes me feel like l'm failing. That at the very least I didn't need to hear about these conversations and I didn't need it discussed at family events.

Was my message so wrong? Does anyone else struggle with this? I love my family so much. I'm doing everything i can to keep loosing weight and it never seems enough, not just for my family but for my body. It just won't go down more.

[wanderlustt-101tn]

Dysautonomia;

Dysautonomia is a medical condition that affects the Autonomic Nervous System, which is responsible for regulating the automatic functions of the body, such as heart rate, blood pressure, digestion, kidney function, and more. People with dysautonomia may experience difficulty in controlling these systems, leading to symptoms like lightheadedness, fainting, abnormal heart rates, and unstable blood pressure. Dysautonomia can manifest in different forms.

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects an estimated 1 out of 100 teenagers, and including adult patients, it impacts a total of 1,00,000 to 3,000,000 Americans. POTS can cause various symptoms such as lightheadedness, fainting, rapid heartbeat, chest pains, shortness of breath, upset stomach, shaking, exercise intolerance, heat intolerance, temperature sensitivity, and more. Although POTS affects women more commonly, men can also get it. Despite appearing healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions such as COPD, congestive heart failure, and kidney disease.

Dysautonomia and POTS can be challenging to treat, and the effectiveness of treatment may vary depending on the expertise of your local medical staff. There are some home remedies that may help alleviate some of the symptoms and triggers associated with these conditions. However, it is important to understand that these remedies may not completely cure Dysautonomia or POTS, and their effectiveness may vary from person to person.

Pots is supposed to be more common than MS or Parkinson’s so why is that some have never heard of it ?

It can take an average of 4-7 years to get proper diagnosis. Because of being misdiagnosed or how most symptoms can be linked to other illnesses. Lots of tests is involved and it just becomes and exhausting time period of wanting answers and fighting to be seen or heard by others.

Pots affects everyone differently so not all pots patients will faint and just because pots is postural doesn’t mean lying down will make symptoms better.

Did you know there are 15 different types of Dysautonomia and all should be taken seriously! No matter how it affects the person it’s a serious illness and it should never be brushed off!! Not only does the illness bring a variety of symptoms but also impacts your life in ways you’d never imagined.

* some of the different types of Dysautonomia 🩵🩵

We shouldn’t have to look sick to get the proper care, treatment and support!

I’m finally comfortable sharing my pots journey and even though I’m nervous and scared about it I can’t wait because while I’m sharing my story I plan to raise awareness on not only pots but als as well. Another illness/disease that impacted my life. I plan to share how much my life has changed since I was diagnosed with pots. I also hope this reaches other chronic illnesses warriors and can show that you can still have a beautiful life even though we have a certain illness.

If you want to know more

intsagram: rebeljennigaines_

TikTok: jennigaines101

February 24th I’ll be participating in my first ever polar plunge and leading up to the big day I plan on sharing my pots journey and how this illness has affected my life! If you have any questions feel free to ask.

🩵🩵🫶🏻💪🏻 no one fights alone!

[stormy333]

Hello October

Keep your eyes on the stars, and your feet on the ground.

Wrapping up September and opening October. There are a few things I'd like to cover in this post, so let's get into it!

#1 How did you all fancy the September blog challenge? Seriously all feedback is welcome. I want to hear your thoughts about it.

#2 What kind of challenges would you like to see in the future or just posts in general? How can I change things up to make it more interesting? Again constructive criticism is welcome I want to hear feedback from my viewers.

#3 October is Breast Cancer Awareness month, but it is also Dysautonomia Awareness month and there's loads more of awarneses I'm sure, but I have Dysautonomia so I low key go awareness crazy during that time.

#4 I will be doing another series but this time it will be a journaling prompt series about goals. 

I am looking forward to writing this, I hope you all look forward to reading it. I hope you are having a lovely day/night whenever you are reading it.

Until next time Loves����

[headpainmigraine]

Doing the Dysautonomia Awareness Challenge thing because I want to.

1. The type of dysautonomia you have

Pandysautonomia

2. Your diagnosis story

I noticed that I was getting lightheaded after standing for too long, and then I started feeling like I was going to faint. It was annoying but not awful, and I have my plate full with chronic migraine, so it got put on the back burner like every other issue I have that I should be dealing with but don't have the energy for.

And then I was so bad on the way to a family holiday in Malta that I needed a wheelchair to get through airport security. And then I had a fainting spell in the middle of a shop in Malta (luckily, sat down before I could fully pass out)

No idea what was going on, still having migraines, so ignored it. Brought it up with my neuro, 'hey, I've also been getting these dizzy spells?'

My current neuro, the fourth one I spoke to, is fantastic. They referred me over to every clinic imaginable because they suspected POTS, but also referred me to an ENT clinic, just in case.

ENT diagnosed me with vestibular migraine, and Persistent Postural-Perceptual Dizziness (PPPD) and gave me physio before discharging me.

Rheumatologist ruled out EDS and diagnosed fibro (the most tentative lacklustre diagnosis I've ever had)

The neurocardiologist really nailed it down though. I was supposed to have a TTT, but they did an active stand instead, and it wasn't clearly POTS, so that killed me.

THEN I had a battery of other tests (exercise test, ambulatory blood pressure, CT scan, heart scan, something else I can't remember) and my neurocardio confirmed pandysautonomia and POTS.

I challenged the diagnosis, because the active stand results had fucked with my head, and she reassured me that no, I definitely have ISSUES. The TTT is just one diagnostic tool, and the results of my other tests, plus my medical history, confirmed the diagnosis.

I also had a non-dipper profile for my BP, which is a little concerning, but I was having a 9-migraine at the time and didn't really sleep.

I'm still waiting for a gastro appointment, and to drill a little deeper on this pandysautonomia thing, but I feel like I had a pretty easy diagnosis journey comparatively (comparative to other people's journeys and my migraine journey)

My POTS is atypical because I have high blood pressure, not low - anyone else with the combination, hmu, I'd love to hear from you. It sucks having an atypical diagnosis in a 'common' illness.

3. How long it took you to get diagnosed

2-3 years, pretty quick

.

4. Your most bothersome symptom

The fucking TREMORS!

I can handle the fainting pretty well, I get the dizziness, it sucks that I can't get up and do things but I was dealing with that before the pandysautonomia got bad because of my constant refractive chronic migraines.

I went from being inactive to being inactive for more reasons, so there wasn't much difference re: impact in my life

but the TREMORS.

I can't handle them! I can't feed myself properly without weighted utensils, and even then I have to take frequent breaks while I eat because the constant shaking is tiring. It gets in the way of my typing, it makes it hard to do anything that needs even a modicum of steadiness, catching crickets for my tarantulas takes 10x longer and feels bad.

And that's just the ones in my hands! The ones in my legs make me feel like I'm wobbling about like an Ed, Edd and Eddy character. The constant shaking through my skeleton is so uncomfortable and irritating. I just sit there and shake and can't paint or draw or felt or anything. UGH.

end bitching.

[micah-has-fallen]

Dysautonomia post #1 (Days 1-3)

Day 1: The type of Dysautonomia you have

- I don’t yet know what specific type I have yet as I’m still in the official diagnosis phase. But my guess is something similar to POTS.

Day 2: Your diagnosis story

- I’m still in the diagnosis phase. I’ve been experiencing symptoms since age 11 and they’ve progressively just gotten worse and worse. They just ran a one week long heart monitor on me and I’m awaiting those results but itll definitely be a long process. (It took so long to seek help because my mom experiences similar things and really doesn’t want a diagnosis so she didn’t get why I should want one)

Day 3: How long it took you to get diagnosed

- As mentioned before it’s been almost six years fighting to even get to see the doctor. As of right now I’ve been in the official process for about six months. So who knows.

[potsiespoons]

[First Image is a blue and white background with the words "October is... Dysautonomia Awareness Month!" on it. A stick-figure girl says, "Make noise for turquoise!" Second image is a blue and white background with the words, "Introducing Potsie's Awareness Challenge!" on it, followed by a list: 1. How dysautonomia effects you; 2. What dysautonomia looks like; 3. Spoonie hack; 4. Your own POTS Problem; 5. The scariest thing about dysautonomia is...] HAPPY DYSAUTONOMIA AWARENESS MONTH EVERYBODY! This month, I'm hosting a special event over on Instagram, but you're all more than welcome to use the prompts to raise awareness here on Tumblr, too! (There's a special bonus if you participate over on Instagram, though... 😬) Also, I would encourage you all to share my comics this month especially--with your help, we can make lots of noise for turquoise! 🎉 Happy awareness raising!

[rhiannarr]

I’m finally home from what has felt like the longest day at the hospital. Still a little drowsy and tender but doing okay! No 30 day disney challenge post today. Will be back tomorrow when I’m feeling a little more human! 🦄

[amytabbycat]

I don’t usually make regular discussion posts that don’t have any fandom content attached, but apparently today is POTS Awareness Day. So I thought I might as well say something ^^

I have both POTS and EDS (fun fact, the two commonly occur together) and it certainly...makes things a bit more challenging, haha. For those that don’t know, POTS is a type of Dysautonomia that can cause a wide range of symptoms, but is generally the most known for a lot of dizziness, especially when changing positions. (e.g. standing up)

When I was younger, getting up could sometimes make me so dizzy I would go momentarily blind due to the swirling colors in my vision and occasionally I’d even lose control of my body and collapse. Thankfully that became a lot better after I was put on Propranolol, which I’ve been on ever since. But I still have lots of sucky symptoms and pain flares that have become increasingly frequent over the years.

I guess all that to say...the struggle is real lol. Having chronic illnesses/disabilities sucks and we have to try extra hard just to achieve the bare minimum a lot of the time. So here’s to all my homies juggling the everyday trials of life with the constant demand for attention from their own body. Like a frazzled parent attempting to pick up groceries while simultaneously trying to soothe the frantic screams of their chronically hysterical toddler. Keep up the great work, y’all! You’re doing great, even if you don’t feel like you are <3

[the--social--anarchist]

Day ten and 14 of the Ehlers Danlos Awareness social media challenge are about adaptations and lifestyle hacks. ⁠ . ⁠ Personally, this topic is my FAVORITE topic. In fact, last year, before I even knew I had EDS (ironic, right?) I made 28 posts dedicated solely to "Spoonie Life Hacks." this is my favorite topic because I want to share with and learn from others how we can do our best to keep living our best lives, regardless of illness and limitation.⁠ .⁠ So, some of favorites? Aside from the obvious mobility aids, and tools intended for disability, I think staying organized and having a system for literally everything is super useful. Baskets are my friend.⁠ .⁠ Another really huge hack I've been using lately is to take my hydration multiplier stick to bed with a yeti mug of ice water and in the plastic spoon. That way I can mix it up and start chugging before I even get up. THIS REALLY REALLY HELPS!! It's specifically for dysautonomia purposes, but also I've found the cold fluids help stimulate my gut too!⁠ .⁠ This is a topic I plan on digging much deeper into (it's kinda the focus) on my blog, which is almosttt done! So stick around for that!⁠ .⁠ .⁠ .⁠ .⁠ .⁠ .⁠ #ehlersdanlossyndrome #eds #chronicillness #chronicpain #spoonie #ehlersdanlos #zebrastrong #invisibleillness #pots #dysautonomia #ehlersdanlosawareness #posturalorthostatictachycardiasyndrome #chronicallyill #chronicfatigue #heds #spoonielife #gastroparesis #fibromyalgia #butyoudontlooksick #potsie #potssyndrome #hypermobility #edsawareness #chronicillnesswarrior #chronicfatiguesyndrome #instablogger #blogging #blogger https://www.instagram.com/p/CAL6lvEIZZu/?igshid=xlrit2iie1xj