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I’m 24. Family has been a massive roadblock in my dysautonomia journey. Had to leave high school at 17. My problems were treated as psychiatric with many failed and awful treatments. I had given up until a visit to the doctor’s for being sick when my PCP told me in January of 2019, “Your heart rate has been way too high after looking back at your chart. I’m referring you to a cardiologist”. 
 

I had no idea any of this was actually happening. I always knew my heart rate would be high whenever I got up and sometimes still when I sat, but I just ignored it like my parents had conditioned me to. Turns out I go to the cardiologist who refers me to an autonomic specialist in Chicago. That specialist diagnoses me with Autonomic Neuropathy - POTS.  Turns out that explained everything from the get go. So much for those 15 failed psych meds, eh? Oddly enough I don’t classify for even an anxiety disorder or depression 🤔 I always wondered why despite everyone around me telling me if it wasn’t diagnosable, it was therefore psychiatric...somehow  

Well, compressions socks and salt tabs have helped blood pressure and therefore the pre-syncope, but nothing else. I’m at a loss. I don’t know what to do. 
 

I’m 24 and had to get a GED at 17. Went back to college at 21 but wasn’t able to sustain it. Same with another job I could only manage for 3 weeks until I crashed into the ground. 
 

I live with my dad. Parents are divorced. My mom is sympathetic with my struggles, though she doesn’t know how to help. And that’s fine obviously. My dad, however, keeps saying “find a way or you’re gonna be homeless eventually.” He says “mind over matter”. I tell him I disagree and I can’t change my reality simply by wishing it. I’ve called him out and said he can put his “mind over matter” mantra to the test in a number of challenges against me, and he can see me beat him out. I’ve also told him when he’s old and suffering, I’ll just say “mind over matter”.  And he admits he doesn’t have a defense to that. Yet he sticks to his views. 
 

I’ve applied for SSI already and got denied. Was told I could be a number of types of “cleaners” lol. But that’s how it goes for most people according to my lawyer. And SSI is pennies. I can’t live off of that. So enough with that BS experience. 
 

So, what type of jobs work for you? Looking at me in my situation, how would you say I support myself? This is a competitive country and people aren’t really looking for a 24 year old near-cripple. But it’s either I make money, or I’m screwed.
 

How can I make a livable wage with dysautonomia, is my question to you. How have you done it/do it? 

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@LukeGroundwalker - I am so sorry about all you are going through, especially at such a young age. I was a nurse when I got POTS and had to stop working, obviously.  My employer tried several different positions for me in order to remain employed but none worked out, so I have learned what I can and cannot do. 

5 hours ago, LukeGroundwalker said:

Turns out I go to the cardiologist who refers me to an autonomic specialist in Chicago. That specialist diagnoses me with Autonomic Neuropathy - POTS.  

Does this specialist TREAT you or did he just diagnose you? I am asking b/c POTS can actually improve with proper treatment. Is it possible that the right medication has not yet been found in your case? You mention having been put on many psychiatric meds - but have they tried all of the available dysautonomia meds? Treatment is highly individual and it can take years after diagnosis to find the right drug. 

5 hours ago, LukeGroundwalker said:

 Went back to college at 21 but wasn’t able to sustain it.

What did you go to college for and what kept you from continouing? Was it the physical limitations of POTS or the brain fog/ fatigue that comes with it? 

In general what I personally have found is that anything that requires being upright or physically active ( including a cleaner or janitor ) is not good in dysautonomia but there are some positions that allow you to work while sitting down. Are you able to tolerate working on a computer for any length of time? Can you talk on a phone? Are you able to do anything for several hours? Could you take online courses from home rather than going to college? --- I certainly understand your frustration and I know what it is like - but don't give up quite yet. You are young and if otherwise healthy there is a lot of hope and possibilities. Talk to your specialist, ask him what his experience is regarding your prognosis and determine what you WANT to do, what you CAN do and then look for ways to do it.  Possibly that is what your Dad means by "mind over matter" ? ---- Be well - and keep active and proactive! Best wishes 😉

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I am disabled and housebound, won my SSDI on first application which gives you an idea of how hard I was hit at 52 years old.  Please appeal the ruling with your lawyer, just about everyone is refused the first time.  I hope that you are seeing Dr B in Chicago, he’s excellent.  If you aren’t please pm me and I will give you his name.  A really great book that will help you and your family understand this illness is The Dysautonomia Project https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243 It includes sections for family, Drs, patients and has good tips on how to manage symptoms.

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14 hours ago, LukeGroundwalker said:

I’ve applied for SSI already and got denied.

If you want to pursue disability, what p8d said is true—most are denied on the first round. There is a way that usually works though: two day cardio-pulmonary testing. Dysautonomia patients fail this almost always and it is often used as grounds for disability. Here is a link: https://workwellfoundation.org/testing-for-disability/

It may not be near you but they may be able to refer you to somewhere in your area. Otherwise, a sitting job or working electronically from home is what many do. Best wishes with this—it is certainly a huge challenge.

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11 hours ago, Pistol said:

@LukeGroundwalker Does this specialist TREAT you or did he just diagnose you? I am asking b/c POTS can actually improve with proper treatment. Is it possible that the right medication has not yet been found in your case? You mention having been put on many psychiatric meds - but have they tried all of the available dysautonomia meds? Treatment is highly individual and it can take years after diagnosis to find the right drug. 

What did you go to college for and what kept you from continouing? Was it the physical limitations of POTS or the brain fog/ fatigue that comes with it? 

Are you able to tolerate working on a computer for any length of time? Can you talk on a phone? Are you able to do anything for several hours? Could you take online courses from home rather than going to college?

He diagnosed me and started me on ivabradine which did not work. I would get very odd heart rhythms. Not palpitations. Something irregular. It got very bad the last couple days I was on it. Stopping it made the rhythms go away. He’s extremely busy. He recently ordered physical therapy for me and I’m starting metoprolol 25mg ER twice daily. Hopefully that helps. I don’t take any psychiatric medications right now. He had me stay on duloxetine, an SNRI, because he said that will help with the POTS. I don’t take that for any anxiety/depression/nerve pain. And that’s the only medication I take outside of metoprolol. I’ll keep narrowing the treatments down as well. 
 

I went back to college to get a degree to have a life and make money, of course. Even though I knew I wasn’t doing well, I tried it anyways. I was going to get a computer science degree. What kept me from continuing were the cognitive effects. I could not use my brain for hours on end. Just like my body gets exhausted, so does my brain in the same way. This goes for everything in normal life nowadays. I can’t play video games anymore. I can only tolerate using my computer for maybe half an hour. My main math class was on the computer and I could not tolerate it. 
 

I can talk on the phone and in-person obviously but I can get short of breath. It’s probably not sustainable for 8 hours per day but still more likely than standing/computer work. In terms of what I could do for several hours, honestly I’m not sure. My best bet is the following:
 

I think my general plan is this. I’m going to be massively uncomfortable, but I need to do it. I’m going to forego college. The expense combined with my age is turning me away. Plus the amount of work and all-day study commitment probably isn’t the best thing to start with. I’m thinking this: I’m going to search for a job to do from home. I’ve been recommended a number of websites to find one. Flexjobs.com, Remote.co, Freelancer.com, Peopleperhour.com, Upwork.com. (If any of you have a specific recommendation for a site please do make it.) 

 

I have the financial ability at least to get a MacBook. I’ve tested them out in-store, and will for a longer duration by borrowing my sister’s. They have the night shift function on there which greatly improves my tolerance for the screen. I use it on my iPhone. 
 

So, I’m hoping I can put in 40 hours a week, Monday-Friday, work from home on a MacBook, lay down while working if need be, find a gig from one of those sites, and hopefully be able to make $12-$15 per hour. In the future, depending on how things were going, I would reconsider college while still looking for opportunities for advancement in my job field. But yeah, once again, the time and financial commitment to college is turning me away. I’m seeing how much debt my sister is going to be in and she’s no further along than me currently. 

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7 hours ago, p8d said:

I am disabled and housebound, won my SSDI on first application which gives you an idea of how hard I was hit at 52 years old.  Please appeal the ruling with your lawyer, just about everyone is refused the first time.  I hope that you are seeing Dr B in Chicago, he’s excellent.  If you aren’t please pm me and I will give you his name.  A really great book that will help you and your family understand this illness is The Dysautonomia Project https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243 It includes sections for family, Drs, patients and has good tips on how to manage symptoms.

I applied for the first time in 2016 at 20 years old. All I knew was my body had chaotic symptoms and I wasn’t able to go to school/work. I didn’t have a lawyer. Just the basic application process. Got denied quickly. 
 

I applied again with a lawyer this time starting in March 2018. I was not diagnosed with POTS until I was by chance in March of 2019. I ended up having a hearing in July of 2019 and was hammered by the judge with grandstanding and falsehoods. You would think a legal hearing would stick to the concrete medical evidence, not politics, but whatever. The “occupational witness” did the back and forth with the judge and narrowed it down to me being able to be an industrial cleaner. This is what my lawyer said would happen. He said they’re “going to talk on and on about why you essentially can’t clean motel rooms”. He also said my district, the Peoria district in Illinois, is the single WORST district for disability approval in the COUNTRY. I was able to find the judges’ approval rates for this district. No wonder, jeez. And the Illinois state government isn’t exactly known for being just, non-corrupt, and fair. Quite the exact opposite actually. My lawyer said I could appeal but I said I give up. It was too frustrating, showed me how screwed the whole system is, and the SSI income I’d get is extremely negligible. I wouldn’t be able to survive off of that. I currently don’t plan on ever reapplying. 
 

And I have seen Dr. B! He’s amazing for sure. Shame he’s insanely busy. I just had a skin biopsy because of all this tingling and vibrating I’m getting in my legs. I tried to ask him all I could when I was in there. I got my answers, but yeah, I had to hurry to get them! Lol

 

And will do! I’ll take a look at that. A manual for this crazy stuff is definitely needed. I don’t even know how to start explaining myself to people. 

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2 hours ago, Sushi said:

If you want to pursue disability, what p8d said is true—most are denied on the first round. There is a way that usually works though: two day cardio-pulmonary testing. Dysautonomia patients fail this almost always and it is often used as grounds for disability. Here is a link: https://workwellfoundation.org/testing-for-disability/

It may not be near you but they may be able to refer you to somewhere in your area. Otherwise, a sitting job or working electronically from home is what many do. Best wishes with this—it is certainly a huge challenge.

Ohhhh ok. I’ve never heard of that. I don’t think plan on reapplying right now (see my last post), but if I ever do, I’ll make sure to do that. 

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I'm a photographer who can't work. So I've tried selling online at etsy and nobody buys then on getty and nobody buys. I get $500.00 a month from the govn and I have $50.00 in my bank account and 3,000 on my credit card. Also, I was in a fender bender and I have car insurance with collision but now they're saying there is hidden damage and they won't pay for it. I don't know what to do honestly. I have to eat a certain way and it's getting expensive. I have medication and supplements to pay for, doctor's appointments. But I don't just have hyper POTS, I have very severe Interstitial Cystitis, Insomnia, and I have Myalgic Encephalomyelitis which leaves me in bed most of the time. I don't know what to do. SSI is BS, I got sick at 18 so how could I possibly have much work experience as a barista while in college then end up bedridden? 

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These are some horrifying stories and I'm probably headed that way myself. I've been dealing with trying to get some form of disability the last few months and know, due to my work history (or lack of it) over the last decade that even at best, it won't be nearly enough to support myself. However, I can't even allow myself to be concerned with finances because the additional stress would make my condition even worse. This often frustrates people around me (mostly family), but they don't understand what additional stress can do to me. I'm indoors with heat, clothing, food and even internet today. It's just not good for me to think past that. 

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If you decide to try to go back to college, some schools like UCF offer online degrees. The Bill and Melinda Gates Foundation has been down there working with them and they have partnered with the Disney Company to offer employees online degrees. Starbucks partnered with someone to, maybe ASU?

I know what you mean with cognitive issues interfering with that goal though. I also have issues with memory and making deadlines. Fatigue makes things exponentially worse. I was lucky to claw my way through college before my dysautonomia got completely out of control. I did it by only taking night classes because my BP was higher at night and it wasn't as warm to walk to class. I managed to work in a cubicle for a few years before I hit a wall.

Hope you figure something out. 

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4 hours ago, KiminOrlando said:

If you decide to try to go back to college, some schools like UCF offer online degrees.

Also, don't forget about the help that the Americans with Disabilities act gives us. I took two years of a foreign language recently and had benefits like taking tests in a private room with double time allowed.

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The amount of stress before I even figured out what the heck was wrong with my body has greatly taken its toll on me. I can’t just erase those years of my life, but in a sense I’m gonna try to. 
 

I honestly have no idea why I got dysautonomia. All I know is I started getting major digestive problems in 2012 and then all of a sudden in 2015 I got the cardiac/orthostatic issues, but had no idea at the time what the heck was causing any of that. And back from when I started getting digestive issues really bad in high school, and I was a minor so my parents really controlled my healthcare, I wasn’t believed at face value at all. My mom thought it was something psychiatric. My dad didn’t care what it was but thought I wasn’t being tough enough. They both lied to me to get me up to this “School Refusal Program”, where I also wasn’t believed, was threatened that if I didn’t come to or complete the program, they would have police come pick me up to take me to the program. I had to “lie” and say, “yeah it’s all anxiety. And you guys helped me feel better”, for them to “discharge” me from the program, only after 40 days of being there. It did nothing for me except traumatize me of course. They had me do “exposure therapy” to fix the nonexistent “anxiety”, which consisted of me standing up in front of people and loudly saying embarrassing stuff about my digestive symptoms. They’d have staff poke their heads in the room and say “who’s stomach is growling in here?”. Yeah, that stuff sure was a lot of help. I can’t f****** believe this country has OFFICIAL PROGRAMS like this. It was inhumane and abusive. The second day I was there, after spending the first day there and realizing what exactly it was, I tried to leave the place on the second day. I female staff member stood in front of me and physically barred me from leaving. I tried to walk around her until someone else locked the doors. Another staff member who was running a group after that accused me of “trying to tackle that lady”. Luckily one poor girl in this program who was close with me during my time there saw the whole thing and stuck up for me because I clearly didn’t try to “tackle” anybody. The people who ran that thing were flat-out insane. Like full-on crazy. The look in their eyes was like they weren’t even there. 
 

That whole theory of it being some type of anxiety was ludicrous, not only because I know for a fact I had zero mental discomfort or anxiousness in school, because years later out of school I experienced true anxiety for some months, but also because I went to a small school and was around THE SAME PEOPLE EVERY DAY FOR THE LAST 12 YEARS. WHY WOULD I ALL OF A SUDDEN GET DEBILITATING ANXIETY WITH NO REASON OR CATALYST FOR IT.

So I went through years and years of nonsense, unnecessary therapies, a litany or psychiatric meds that did nothing but give me awful withdrawals from a few of them, all spearheaded by my parents. Until I set some boundaries with my mom in particular,  I had medical professionals in my ear saying “your mom needs to step back. She’s being completely inappropriate”. My diagnosis in 2019 was by chance and luck and wasn’t expected. 2012-2018 I knew zilch about dysautonomia. Never even heard the term. Suffered what essentially mounts to abuse for years and would think over and over, “what’s wrong with me? Am I defective or crazy or something?”, as I was victimized and let them doubt myself over and over. 
 

Well, my process now is to get a “rebirth” of sorts. Back to the basics, which I never had. I was a very well-performing student, at a challenging private school system no less. I was a good athlete. But I never had all 3 basic needs all at one time: Proper sleep, nutrition, and exercise. 
 

I would usually only have proper sleep and exercise at one time. Nutrition was never something I knew about in my household. My parents are both obese. We never had family meals. It was a free-for-all. Want something? Eat out or pick something from the pantry/fridge/freezer. That was normal for me. I never knew there were basic nutritional needs. But this a common side-effect of living in America. People are born into this crap and don’t know any better. I lived in 3rd-world Indonesia for 4 and a half months, and I saw what it’s like when you’re not born into such privilege you can eat yourself into a disease. By the way, I’m moving back to South East Asia eventually. Screw this place that has treated me like garbage. 
 

I’m not and never have been obese. I’m too thin right now. I look close to what I did when I was a long distance runner. I can’t put on a pound. It’s not right. I’m 6’1” with a large frame. My ideal weight is somewhere around 195-200lbs, if not more with strength training. I currently weigh 172lbs. I ate like a king over the holiday season and stepped on the scale to see absolutely zero weight gain. 
 

I’m “rebirthing” myself and going back to the basics. Proper sleep, diet, and exercise. Starting with sleep and diet currently. Diet is easy but sleep has been a mess. I’ve learned I have either Delayed Sleep Phase Disorder or Sighted Non-24 Disorder. I’m trying to do chronotherapy to reset my circadian rhythm, but it’s been very hard so far. I’m averaging about 3 hours of sleep a night, and that’s not helping me of course. I feel so weird from the sleep deprivation. 
 

But, I have faith in this process. Once my sleep and diet are proper and consistent, and my body hopefully feels some energy, I’ll move onto exercise. I’m looking forward to getting back into lifting and martial arts. I’ve missed those things. And hopefully when all this comes together I’ll feel sustainable enough to hold down a full-time job. 
 

And this is all essentially hypothetical right now, though. Sleep isn’t going too smooth. I’m hoping it all works out somehow, but with this dysautonomia stuff, it’s likely to be extremely frustrating. 
 

Well, I think I’ll update in a few months. I’m hoping it all comes together by March so I can have a job around then. I’m headed towards a path of destruction if I keep feeling this bad while living around people with toxic personalities. 

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7 hours ago, LukeGroundwalker said:

But, I have faith in this process. Once my sleep and diet are proper and consistent, and my body hopefully feels some energy, I’ll move onto exercise. I’m looking forward to getting back into lifting and martial arts. I’ve missed those things. And hopefully when all this comes together I’ll feel sustainable enough to hold down a full-time job. 
 

I've never given up the conviction that I will eventually recover and get back to a lot of these same things, but I caution you not to set hard goals and time limits because you can move forward and then throw yourself back into despair if something happens that's not under your control and you don't meet these goals. Optimism and direction are great, but be careful not to let it turn into frustration. I still struggle with acceptance sometimes, but it needs to be a tool in the toolbox (I feel like this right now and it's okay. I still believe it's impermanent.) or you'll drive yourself mad and suffer worse setbacks. 

There is one school of thought from a popular neural rewiring program that suggests you should operate under the belief that the changes have already occurred. You're already okay, but you "choose" not to do things. Not because they'll cause symptoms, but because you'd rather do something else. Yes, it's a bit of a lie and you're trying to trick yourself, but that seems to be the point. 

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Here's how I approached jobs/ work. My biggest problems were 1. That I couldn't do any real physical tasks (walking, lifting, etc.) and 2. I was not sure how I would feel from day to day, and was not fully accepting my limitations.

First I started doing freelance graphic design on some of the freelance websites and sound design work for about two years neither of which afforded me a livable income. Then I was able to get a computer based kind of coding type of job where I could work remotely but I still had to go into the office for training and the mestinon that I was on which would allow me to do a little more as far as walking goes was already by the end of the week becoming almost ineffective. So I ended up getting a powered wheelchair which basically allows me to go into the office when I need to and just allows me to do much more in life overall -- I would have no life without it. With my condition sitting upright for long periods of time doesn't bother me at all, and I saw my only option for work as being somehow computer based.

Also I had to learn how to be better with money, which kind of doing the Dave Ramsey stuff helped me with. This I just add in because just like with my health and work, I feel like I needed to approach finances from a more tactical perspective. I'm going to have higher medical costs than the 'normal' person throughout my whole life; medications, wheelchair batteries, more doctors appointments. For all of these areas it was just a process of doing what I could, with what I had at my disposal, where I was at.

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  • 3 weeks later...

I've been through quite a bit of ugly things in my life, including plenty of health problems.  Dysautonomia's a breeze compared to what I've been through.  I wasn't supposed to make it to be 19, then 20, 25, 30, etc.  No way I'd ever see 40, so we deferred a lot of health issues figuring I wasn't going to be around long enough for it to matter.   Well, I made it... so now I'm having to catch up on all of the 'deferred maintenance.'    I started working when I was 12, worked 60-100 hours/week throughout high school, and continued into my adult life that way.  If I wasn't in a hospital bed, I was working.  

A few thoughts from my experiences:

1) Do not let get caught up by your diagnoses/diseases. REFUSE to accept it.  So often I've seen people assume their disease and let it become their identity.  I've never seen anyone get better that way.  Just because you broke a bone doesn't mean it's broken for life, or because you got the flu you've got flu for life.  Doctors are often wrong.  Make it a point to intentionally prove them wrong.  

2) Focus on what still works rather than what doesn't.  My body's been through a lot and doesn't exactly work the way it's supposed to.  If I focused on my health issues, I'd be a depressed mess.  At one point in my life, I was running up to 100 miles a week, hanging 1000' feet in the air of steel beams, etc.  I probably couldn't even do a 5K right now, my body's shot, and I have plenty of brain damage, but I don't let myself dwell on it.  

3) Pace yourself.  Be flexible.  Some days I'm more productive than others.  Some days my body's more capable than others.  I go with the flow and try to work my schedule around it.  I always have more things to do at work than time to do them, so plenty of tasks to choose from.  Sometimes I just need to modify how I plan on doing something. 

4) Keep pushing your boundaries.  Until you hit the brick wall, you don't really know where it is.  Sometimes I'm capable of a lot more than I give myself credit for.   Other times I push myself so hard that I physically collapse, and that's fine with me.  My friends aren't as thrilled with the latter as I am.  

5) Have goals. Both short-term (doable) and long-term (dream the impossible).  Some days just not passing out is the goal.  Every job I've ever held has been someone's dream job.  For me they were stepping stones.  I've been putting 5Ks I'd like to run on the calendar for the past year or so.  I've not run any yet, but I'm determined that I will.  

6) Leave the house at least once a day.  Make sure you interact with others at least every few days (Facebook/texting doesn't count).  Very few humans can truly live alone.  

7) Do what you like doing!   What would you be willing to do for free / volunteer?   DO it.  If you can find a way to somehow make money while doing it, even better. 

 

As an aside, I wouldn't buy a Macbook even though I'm typing this on one.  You can buy off-lease enterprise Thinkpads all day for a fraction of their original value.  In fact, I'm replacing this well-worn MBP with a Thinkpad soon.   Linux/Windows are where business is at these days, even in the creative space. 

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1 hour ago, bunny said:

Do not let get caught up by your diagnoses/diseases. REFUSE to accept it

In my case it was the opposite - I had to learn to accept my illness and limitations in order to function. As I went through the stages of grieving over losing my independence from POTS I got very depressed and I realized that I got stuck in the denial phase. Once I learned to accept my "new Me" things got a lot better. Acceptance does not mean defeat - it means being able to live with the reality of loss and building a new existence including the limitations. 

 

1 hour ago, bunny said:

Keep pushing your boundaries. 

This also is different for me and many others with POTS. If I push myself beyond my limits I become worse.  In my case I have to follow a strict balance of rest and activity - if I overdo it I become too symptomatic to function. However - I do push myself to be active WITHIN MY LIMITATIONS, meaning I exercise and am socially active as much as my illness allows me to safely. 

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