Dysautonomia Awareness Month

Hello all! This month is dysautonomia awareness month!

Now this is probably where you're saying dys-auto-what? This can get really complicated so I'm going to try to put it as simply as possible.

Dysautonomia is an umbrella term that refers to conditions which cause dysfunction of the autonomic nervous system. I personally have postural orthostatic tachycardia syndrome or POTS*. There are many other conditions that are under this umbrella, but I am going to keep the focus on my personal conditions.

*My POTS was caused by a genetic condition I have called ehlers-danlos syndrome, which affects your connective tissues.

So now you know what the word means, but now there is the question: What is the autonomic nervous system?

The autonomic nervous system refers to all the body's involuntary functions, or the functions you don't consciously control. This means things like heart rate, blood pressure, digestion, vasoconstriction/dilation, pupillary response, sweating and more.

What are the signs and symptoms of dysautonomia and POTS?

More symptoms can include: exercise intolerance, heat intolerance, insomnia, flushing, "coat hanger pain"*, Reynaud's Phenomenon**, hypovolemia (low blood volume), and more...

*Coat hanger pain is the feeling of pain, similar to a charley horse sensation in the back of the neck and shoulder areas in a distribution that is in the shape of a coat hanger. For more information about this check out this article from The Dysautonomia Project: Coat Hanger Phenomenon & Pretzel Leg Sign

**Raynaud’s phenomenon is a problem that causes decreased blood flow to the fingers. In some cases, it also causes less blood flow to the ears, toes, nipples, knees, or nose. This happens due to spasms of blood vessels in those areas. The spasms happen in response to cold, stress, or emotional upset.

The severity of POTS symptoms varies. Approximately 25% of POTS patients are so disabled that they cannot work or attend school. The disability seen in POTS has been compared to COPD and congestive heart failure. - Dysautonomia International

I am personally a part of that 25% percent that are unable to work. The fact that I have many other conditions on top (even other than the EDS I talked about earlier) of this is too much on my body to be able to do much.

Speaking of pain. POTS causes a lot of pain, both mental and physical, even outside of the coat hanger pain I just talked about.
Seriously, I try to never be mean. If it comes across that way, I promise I'm probably not irritated at you. Pain can be draining and frustrating.
The things about chronic pain is that you don't get a break from it. It is there on birthdays, vacations, holidays. It's there 24 hours a day, 7 days a week, 52 weeks a year. It doesn't care how old or young you are or if you've got something you need to do. Pain is always nagging even if you can't physically see it.

Might be easier to say where it doesn't hurt. As the chart above said, POTS affects every part of the body.
Why is this?
As I will talk more about later, POTS makes the body have blood distribution issues. Blood will pool in arms and legs. The body struggles with veinous return, which I will explain more later, but for now it is bringing blood back up to the heart. Because your body is struggling to bringing blood back up to the heart to oxygenate and send on to the rest of your body, it can leave areas, such as muscles, not getting the amount of oxygen they need.
When your muscles don't get adequate oxygenation it can cause cramping. More than that though, it causes a buildup of lactic acid. Lactic acid is what makes you feel sore the day after you have a really intense workout. Except with POTS, you don't have to work out to be sore. You can get sore just by standing up and walking around your home.
This is what causes the coat hanger pain I just talked about. It's not exclusive to the coat hanger pain though, it can happen in any part of the body.

Contrary to popular belief, you don't have to faint to have POTS! Fainting is nowhere in the diagnostic criteria. It is a symptom many with POTS have though and I will explain why later on in this post.
In order to get diagnosed with POTS your heart rate has to increase by 30 or more beats per minute (bpm) or exceed 120+ bpm within the first 10 minutes of standing.

POTS is not a cardiac condition. It is a condition of the autonomic nervous system. Now this condition does affect the heart because it can cause tachycardia and effect blood pressure for either hypotension or hypertension. I personally usually have hypotension, or low blood pressure.
So think about it this way: if the body is a computer your hardware is fine, it's the programming/wiring that is messed up. Unlike a computer though, there isn't currently a way to fix said programming. Even now in the year 2023 there is still so many things about the brain and nervous system that isn't understood, more than you would probably think.

"If you lose 3% of the blood flow to the brain, you'll know something is going on. It may be irritability, it may be a concentration problem.
If you lose 5% of the blood flow, you may start having chest discomfort and you may get a headache.
If you lose 8% of the blood flow, you may start getting nauseated and dizzy.
If you lose 20% of the blood flow to the brain, then your body is going to make you get flat... passing out as a coping mechanism for your brain."
- Dr. Randy Thompson
Okay, so as explained above, laying flat is helping get blood flow back to your brain by the use of gravity. This is why it is considered postural orthostatic tachycardia syndrome and why symptoms will ease when you're lying down.

For example, think about a water bottle (your body) that is about 3/4ths filled (your blood) It's not fully filled because those with POTS often have hypovolemia (low blood volume). When the bottle is standing upright, gravity pulls the water to stay at the bottom of the bottle. That means there is no more than a couple of small drops (at most) of water at the cap. If you push the water bottle over, the water is now able to touch both the bottom and the cap of the bottle at the same time.

Dealing with brain fog can come on suddenly. I can be having a conversation and completely forget what we are talking about or what I wanted to say. It's something that is frustratingly outside my control.
You know you have brain fog when you use the word "thingy" all the time because you can't remember what things are called anymore.
So, yes brain fog is real. If I do not understand what you are saying, please be patient with me. I hate that I can't take in information very easily. I promise, it is not because I'm ignoring you. If I interrupt you, it's not that I'm trying to be disrespectful, but if I think of something I need to say, I have to say it then or I will completely forget it. If I forget what we are talking about, it isn't that I don't care, my brain just doesn't always cooperate with me. I apologize if it comes across this way.

So brain fog happens when your brain isn't getting the oxygen it needs. Why is that?

This is where blood pooling comes in. Gravity works a little too well for those with POTS. Gravity is pulling your blood down causing it to get stuck in your extremities, most often your legs but it can in your arms too.

Because of this, people with POTS often have hypovolemia, low blood volume. This is not something that can be fixed by getting a blood transfusion because it is caused by gravity pulling blood down. This is why it is particularly important to keep hydrated to keep blood volume up as much as possible.

Why is blood getting stuck? It's not that we have any more gravity than the average person. It goes back to the autonomic nervous system. You don't consciously control your blood vessels constricting (vasoconstricting) to bring blood back up to the heart (veinous return).

For me, I have POTS as a result of a genetic condition called ehlers-danlos syndrome. This condition causes your body to make faulty connective tissue causing laxity and hypermobility. Because vessels are made from connective tissue, that means they are more stretchy than they are supposed to be. This makes it even harder for your body to vasoconstrict for veinous return, which causes hypotension.

Even in other cases where POTS may be caused by something other than EDS, it is still because of insufficient oxygen perfusion. Because blood isn't being returned to the heart, the heart doesn't have enough to send 100% of what your brain needs.

When a normal person stands up, their blood vessels in their legs constrict, forcing blood to go back up to the heart.
When a person with POTS stands up, the blood vessels do not constrict properly. So gravity pulls your blood down, causing it to pool in your extremities instead of going where it's supposed to. This leads to low blood pressure and tachycardia to try and get blood back up to your heart.
Why does this cause low blood pressure? Because your blood vessels have reduced ability to contract. The less the vessel contracts, the lower your blood pressure is.
Why does this cause tachycardia (rapid heart rate)? Because when you're not getting adequate blood perfusion, your heart rate speeds up to get it back up to your heart faster to be able to get oxygen to the rest of your body.

Dealing with the heat of summers in Texas is one of the hardest parts of handling my symptoms. It isn't just environmental heat either, hot meals can do the same things to me. I have to wait until food has cooled off before I can eat it and I don't drink hot beverages either.

If you want to know where I am through the summer months you can just assume that I am in-doors in air conditioning. I keep a fan on me and if it is really hot, I keep damp rags around my neck to try and keep cool!

Part of the autonomic nervous system is temperature regulation. My body cannot adequately adapt to climate. I can get hot very easily and it takes a long time before I can get cooled off - even if I am completely drenched in sweat which also happens often. Not quite to the scale of heat, but the same goes when I get cold - it's hard to get warm again.

That isn't explaining why the heat makes symptoms worse though. Heat is a vasodilator, meaning that it causes your blood vessels to expand. So gravity is already against you, trying to keep your blood from getting back up from the heart and brain and the heat makes that even worse because of the dilated vessels.

So think about it this way: gravity is already against you. Your vessels are more stretchy than they are supposed to be. Now you've got heat that is dilating the vessels even more. Combine that with low blood pressure and think about how that would feel.

Imagine a flexible tube that you've filled with water. Your vessels being the tube and your blood being the water. Except the tube is stretching more than it's supposed to. This makes being able to push the water up the tube, going against gravity, even harder than the average person. If you squeeze on it with some strength (a normal blood pressure), sure some of the fluid will go up, but because of the stretch it isn't the amount it should be. Now think about squeezing it with next to no strength (low blood pressure). Even less will be able to travel up the tube this way.

So, your body can't regulate temperature, your blood is stuck in your extremities, and you're not getting adequate perfusion to your heart and brain.

Now for large meals being a POTSie's worst enemy. This is also because of the autonomic nervous system being compromised. Digestion is another one of those functions that you do not consciously control.

Eating large meals means that blood is being shunted to the gut. The blood has to come from somewhere, so the gut is stealing it from other places in the body because we already do not have high enough blood volume for it to go everywhere it's needed. This means that less blood is being sent to the brain, heart and lungs, leading to a worsening of symptoms.

You also have to think about what happens when your gut isn't getting the blood it needs to digest. It's stuck in your arms and legs, or it's being used elsewhere if you aren't in the perfect environment: sitting still in a cool room with your legs propped up. If your gut isn't getting the blood flow it needs, that means it can't digest. Food will just sit in your stomach causing nausea and bloating. Food can't just sit there indefinitely so if your stomach doesn't get the resources it needs to digest, it will come back up. I speak from experience that this is not pleasant.

Standing in lines or going up stairs is also a blood distribution issue, working the same way as explained with heat and digestion. Your muscles are needing more blood to be able to stand and climb, causing other areas to get decreased oxygenation. Standing still can cause your vessels to go lax and increase blood pooling. It is important to flex your muscles and do counter maneuvers when standing to help prevent this. (I will be getting more into counter maneuvers later on.)

Ignorance from others can make things difficult for those with chronic health issues which I will go over more later in the post.

POTS/Dysautonomia can cause anxiety, but anxiety cannot cause POTS!
Part of the autonomic nervous system is the fight or flight and rest and digest responses. POTS keeps your body in fight or flight mode, which is something that anxiety can trigger.
As for rest and digest, POTS has never heard of them. It's not something the condition understands! It likes making you tachycardic and short of breath in fight or flight, even when there isn't anything happening to warrant that response 😂.

Tachycardia is one of the biggest symptoms of POTS. For a POTS diagnosis, your heart rate must increase by 30+ bpm or be over 120+ bpm within the first ten minutes of standing.

POTS is characterized by heart rate increasing upon sitting up and standing, henceforth postural which heart rate jumps and blood pressure drops (hypotension) when you're posture is upright. So you can assume if I am standing to talk, waiting in a line, or simply walking to my car, my heart is racing.

That does not mean that if you lie down that all of your symptoms will go away. It can take a while for your body to recover by returning the oxygen debt to the body to bring your heart rate back down. Not to mention all of the other things your body is going through with all of your autonomic functions going crazy on you. Meaning that sitting and lying down help ease symptoms, but it won't necessarily take all symptoms away.

Wanna know why I always seem exhausted? It's because I am! My heart has been working out without my consent!
#Chronicallyexhausted

So this is kind of a funny story: I was recently talking with my dad about how many things from when I was younger make more sense now that we know about my disorders. In middle school and high school I would put myself to bed at nine every night. He said that he was by no means complaining about this, but he found it really weird that his teenager was going to bed so early without any prompting. He had the thought that I was just kind of a lazy teenager, but I genuinely was tired! We never thought too much about it at the time, but it makes sense now.

Me: stands up
Me: Oh look, my heart rate is 120 bpm. Is this exercise?
Me: I did the thing. I'm gonna sit back down now.
This now makes how sick and exhausted working out has always made me, even when I was in the best shape of my life in my gymnastics days! I would be drenched in sweat, unable to cool myself down, nauseous, and always felt like I could pass out at any moment. Which was most likely why I was never that great at gymnastics. I was worn out, afraid that something would dislocate (I didn't know that I had ehlers-danlos syndrome at the time!), and my thoughts were never clear. I regret nothing from being in gymnastics, I genuinely loved it, but at least now I understand why I struggled so much with it.
Going along with the things in gymnastics making more sense now, there's more that make sense in hindsight. Ehlers-Danlos syndrome is a connective tissue disorder that makes you stretchy and hypermobile. It leads to dislocating things easily. When I was a toddler, I dislocated my shoulder just by being put in my car seat! Again, we just thought that I was accident prone (which to be honest I always have been and always will be). We went to the ER, got it put back in place and went about our life.
Showering is often very hard for those with POTS. It goes back to the environmental conditions that I was talking about earlier. You are most likely taking a hot shower, which causes vasodilation, which worsens the blood pooling which I explained when talking about how heat affects me.
Because this is a known thing that would make symptoms worse, it is recommended that we take lukewarm showers instead of hot showers, but who can stand that? So if you do decide to continue to take hot showers, standing isn't the best idea. No one wants to fall or faint in the shower; that is a major safety hazard! I and many others have a shower chair so I don't faint while taking a shower! Even then I'm usually completely wiped for the rest of the day.
So a somewhat funny story about falling next to the shower:
One day I was sitting in my shower chair with my dog in my lap. At the time she had fleas so I had her in the bathroom trying every trick in the book to get rid of them! Well seemingly out of nowhere, the chair gives out from under me and TinkerBell. We fall backwards, TinkerBell was unharmed, but I ended up hitting my head on the tiled wall. I ended up going to the ER because I was concerned I might have gotten a concussion. The CT was clear but I definitely had a major headache for a while after that.
Moral of the story: If you use a shower chair, particularly if it has aluminum legs, make sure it isn't too wide for your shower/bathtub. Over time the aluminum legs bent from being too wide for my bathtub and that day decided to give out on me! After that I got a narrower chair that had sturdier legs so that doesn't happen again!

Even with the chair, taking a shower still zaps the energy out of me. You learn to only shower when you absolutely have to and learn how to do sponge baths to get by just a little bit longer before the exhausting task of bathing.
Sometimes even only one or none of these. A lot of the time to be able to do anything, I need to be sitting in a reclined position with my feet up. That is how I'm sitting as I'm typing this out!

A 10 year retrospective study of Mayo Clinic's pediatric POTS patients found that, on an average of 5 years after their visit to Mayo Clinic, 52.8% had improved symptoms but still had POTS and only 18.2% had fully recovered.(27) A 700 patient survey conducted by Dysautonomia International found that 48% of POTS patients developed their first symptoms of POTS over the age of 18. -Dysautonomia International
Now I need to put out there that depending on what has caused you to develop POTS can determine whether you get better or not.

Recently there has been an increase of people exhibiting POTS and POTS like symptoms as a result of COVID. This is something that can improve as your body recovers from the virus. Studies show that in cases of viral POTS 50% of people will almost fully or fully recover within a 2-5 year period.

In my case, it is caused by a genetic condition, ehlers-danlos syndrome. This is something you are born with and does not go away. There are medications and exercises that you can do to help with your symptoms but there is no cure. It is something that I will have to deal with until the day I die.

POTS and POTS like symptoms can come secondary to other autoimmune conditions.
Chronic illness exhaustion is real. No matter how much sleep you get, you will always be tired.
And this doesn't even talk about the insomnia part of it.

Managing symptoms:
Because there is no cure, all you can do is manage symptoms. This comes with educating yourself to be able to understand what is happening to your body so you can find things to help. This is a collaboration with your doctor, particularly when it comes to medications.
Dehydration is a major trigger that will make symptoms worse. Those with POTS often have a low blood volume (hypovolemia). Between not having a high enough blood volume and gravity pulling your blood downward, it is important to drink lots of water. Hydration helps keep blood volume up and reduce severity of symptoms. The amount one should have per day varies for different genders, ages, and weight.
POTS may require you to reduce your activity load, get more sleep, and change your schedule. It is helpful to plan activities for the time of day that is best for you; for many POTS patients, the morning is particularly difficult. You will likely need more sleep than the average person, particularly on days where symptoms are worse, or to prepare for things planned later. Even then you may not feel up to making it to whatever you planned. There are times where you simply do not know what you'll feel up to doing until the time comes.
As previously stated mornings can be especially symptomatic times for many POTS patients. There are a few things you can do to help mitigate these symptoms. It is helpful to drink a large glass of water or other hydrating fluid before you get up in the morning. It is also recommended to break down the standing up process into stages: supine to seated to standing.
I've already gone over what happens when you have a large meal. Skipping meals can also have negative effects. We struggle with lightheadedness as it is, the last thing we need is to make that worse with low blood sugar. It's a fine line in the battle of being nauseous because you've eaten or being nauseous because you haven't eaten.
Medication changes usually take an adjustment period. The first few times taking a new prescription may make you feel worse or off. This is something that you should keep in contact with your doctor about to make sure this is the medicine you need or it you need to change it to another one.
Once you get used to a medication, missing a dose can throw your body off. It's used to getting help for whatever you're taking the medication for, and without that help it can make symptoms worse.
Alcohol is a depressant, this means that it relaxes the body. Our already lax vessels don't need this, it will just make flushing and blood pooling worse. Alcohol can also dehydrate you, causing further hypotension, which makes it harder to send blood where it needs to go.
Caffeine is more of a complicated trigger because there are symptoms (ex: migraines) it can help. The negative is that it is a stimulant, meaning it can increase your already too fast heart rate. You have to weigh the pro's and con's to decide if it is worth it or not. It is often different for each individual person.

So a high sodium diet? That the opposite of what we've all been taught. Well when you have LOW blood pressure (hypotension) instead of high, this is the course of treatment.
How does that work?
Because we have low blood volume, we need to stay hydrated. Water follows salt, so the more salt we eat, the more water we retain. This helps keep blood volume up and raise blood pressure. So yes, we are trying to be bloated with water weight!
I have pink Himalayan salt above because it's my favorite! Most salt is equal, so the pink salt isn't necessarily better for you than other types of salt. It's just personal preference. 😊
I have actually gotten to the point where if I don't put a good amount of salt in my food that it tastes incredibly bland. It probably saying something that I add salt to bags of chips!

1. You know just a minute ago I was talking about the high sodium diet? Well guess what? There are steroids that make your kidney's retain salt so we can retain more water! It's nothing fun that would be performance enhancing, we just wanna be salty.
2. Certain postures and physical maneuvers can help reduce orthostatic symptoms, when people are upright using the contraction of leg muscles to pump blood back to the heart and by compressing the abdomen to reduce the amount of blood that pools in the intestinal circulation. Learn more here.
3. Click here for salty food suggestions from the Dysautonomia International website.
4. Compression is compression, it doesn't have to be stockings. Many shapewear things do the job great. I probably should wear the stockings, but it actually gets pretty uncomfortable because instead of my blood pooling in my lower legs, it pools in my knees which causes a lot of pressure in them. I personally think abdominal and thigh compression is the most helpful for me. There are compression items for just about every part of the body though for each persons unique needs.
5. My favorite electrolyte beverages are Gatorade zero and Propel water.
6. After eating a large meal, much of our blood is redirected to aid in the digestion process, which, for POTS patients, can increase symptoms. Therefore, it is recommended to eat several smaller meals throughout the day in lieu of two or three large ones - DI.
7. It is important for POTS patients to maintain an even temperature as extremes, particularly heat, can exacerbate symptoms. Air conditioning, body cooling vests, sun shirts, handheld misters/personal fans, hats, layers in case of temperature fluctuation, and quick drying clothing and sheets can all be helpful in maintaining an even temperature. Some patients use an old fashioned bag of frozen peas as an ice pack during extreme heat. The peas mold to the body, and can be used and re-frozen over and over again. - DI
8. Bending over can make symptoms worse and cause you to feel faint.
9. Click here for support groups to join!
10. You are the expert for your own body. Do what you need and talk to your doctor on things that can help you. Others are just trying to be helpful but don't understand your condition.
For more information check here.

What does it feel like to have Dysautonomia/Chronic illness?

Dysautonomia is something that isn't taught about in things like medical school. It was only "discovered" in 1993. There are some doctors that don't believe it exists, even with the research out there proving it. I have actually had a doctor laugh at me when I was telling him about my diagnosis. It's an area that still isn't very understood, so it can be hard getting diagnosed or treated. The average time it takes to get diagnosed is 4 years. Luckily, I was diagnosed within a year of developing debilitating symptoms.

It is said that the quality of life for someone with POTS is comparable to those with COPD and patients on dialysis for kidney failure.
And every day I can do things, I pay for over the next few days. Usually lying down on my sofa with my legs elevated. On days like that I have next to no attention span so I put something I've already seen before on the TV so if I a miss something, it's not that big of a deal. My go-to show is Grey's Anatomy. I also love Impractical Jokers, Big Bang Theory, Call the Midwife, Heartland, Reba, and Flip or Flop.

Just picture Effie Trinket trying to tell you how awesome the unpleasant side effects are 😂 Like this drug can cause excessive growth of ear hair, cause your bones to dissolve, or change your vocal chords to where you can only bark instead of speak.
Effie: Isn't this wonderful? Ear hair may be the next new trend! And we don't really need bones anyway. Who cares if we only bark? That way we can identify as a dog!

You know, it might not be quite as bad if I actually got an invite to said party.

I would have never gone to college and got all that student loan debt if I had realized what was going to happen. I actually kept my illness a secret from most people for years because I didn't know what was happening to me or if I would be able to recover. I spent most of my time those first couple of years working with my doctors to figure out the cause of the debilitating symptoms. We figured out I had POTS within 6 months, but it took a couple years to figure out that it was being caused by a genetic disorder ehlers-danlos syndrome. Through this time I searched to find a solution only to find that there currently isn't one. (I'll also say that I've seen several doctors and most share the same opinion - we are already doing everything we can.)

When you live with chronic illness, it can be hard to figure out if there is a new something going on within your body, or if it's just the same stuff you deal with daily. You never know how sick is too sick to warrant a visit to the emergency room.

#NormalizeMobilityAids
If they can help you be able to do and enjoy things better, go for it! And likewise, if you see someone seemingly young and healthy using a scooter at the grocery store or using a cane, or something of the like - don't judge them. You never know what someone is going through under the surface.

It's like your body doesn't like you and wants to make your life difficult. Like if you ate your favorite snack, that you had previously been able to eat even just the day before to find that is another thing added to the list of foods that make you sick.

It's not that I don't want to do anything, I just don't feel up to it. Just imagine wanting to do things, but living in a body who won't let you. Just because I don't work doesn't mean I have endless free time to be lazy. I spend my days dealing with symptoms which is a full time job in and of itself.

We aren't faking being sick, we're faking being well. Just because someone looks great doesn't mean they aren't struggling with things that you can't see.

Sleep: you deal with insomnia. When you can finally get to sleep, you have a hard time staying asleep. But no matter how much sleep you get, you will never feel rested.
Income/Occupation: You can't work and getting on disability seems impossible. It's especially frustrating when you've got this college degree you can't use.
Relationships/friendships/social life: It's hard to maintain relationships with anyone. People don't understand chronic illness. You don't feel up to doing much and you are not going to get better.
Mental health: You live in a world who judges things they know nothing about (as in your illness). They keep telling you to just get treatment and get better without listening when you tell them you are already doing all the treatment there is out there. You are watching everyone move on without you and feeling some major FOMO, but there isn't anything you can do about it. It does get easier when you've learned to accept this is your life.
Self-care: When you aren't leaving the house and you're not seeing anyone it's easy to let your self-care go. These things take energy and you don't want to waste it on sitting alone, it's better saved when you get to see/visit people.

Everyday I take 11-15 prescription medications three times a day.
Since developing symptoms, I've had to change my diet a lot. I follow a low FODMAP diet. I have to stay away from gluten and dairy because they make me sick. I don't have celiac, my stomach just doesn't want to digest it. I have to avoid oxalates because I have kidney problems. There are times where I can eat something with no issues, then I'll have the exact same thing a few days later and it makes me very sick. So even with keeping my diet pretty limited, I really don't know what I can eat that won't make me sick.
You know, I have an entire college education in Athletic Training. Even though I can't be an Athletic Trainer, I guess I'm still using the knowledge I got from it to better understand my own health conditions. This just makes me think of God's plans and God's timing. I planned on getting the degree to be an athletic trainer. I think God planned for me to get the degree to be able to understand what was happening to me. He only allowed my symptoms to get debilitatingly bad when I was in my senior year so I could have the whole four years of knowledge. If I had known, I wouldn't have gotten all of that student loan debt, but it's obvious that God wanted me to have that experience.
I have been known to just sit down on the floor where ever I am if I start feeling faint/sick. Even if it's in the middle of a store or on the ground outside.
Sitting with legs raised helps blood get back to the heart! I sit in positions like this all of the time. That is honestly when I feel the best.
I may have kind of a dark sense of humor, but making humor from the hard situations can help you through it!

Speaking of humor :) this is more caused by ehlers-danlos, fibromyalgia, and rheumatoid arthritis than POTS, but really, they all co-exist together in my body.

My illness is invisible.

Most of the time, you only see the done up me in pictures I post. That me only exists for a few hours each week, sometimes even less. The picture of me on the right is how I am most of the time. Sometimes, looking much worse than the picture I included. I just don't take pictures while I'm feeling terrible.

When you look normal, people don't see the battle you are fighting within your body every day.
So the next time you see someone take the closer parking spot, uses the handicap restroom, letting someone older pushing a younger person in a wheelchair, avoid certain aisles in the supermarket, or any other type situation - don't judge. You don't know what is going on in their life, even if they are someone you know. They may be struggling with something you cannot see from the surface. Particularly because people dealing with chronic illness have learned how to pretend they are well to be able to avoid the judgment of people who do not know or understand their situation. Then it makes it just that much harder to be able to convince people that we really are sick because of how much we hide it.

Please excuse the language 💙
Chronic illness does not discriminate by age. Anyone could be affected by it. Even someone in their teens or twenties. POTS most commonly affects women in childbearing years, but it is possible for any gender or age to develop it.

Even in ways you could never imagine unless you've lived it.

Unrelated, but I wish I could do this special effects makeup on myself!

Before moving on to the last section of this, I want to explain something that seems to be the hardest thing for people understand.

A disease is something you contract from an outside source - like a bacteria or virus. This is something that there are medicines to treat. In the computer analogy, this would be the issue with the hardware.

A disorder is something within your body not working properly. It is not something that is caused from anything outside of your body.

My illnesses are NOT diseases. People without a medical understanding often get the two mixed up, but they are not interchangeable. As I said earlier my POTS and EDS are issues with the wiring/programming.

Ehlers-Danlos syndrome is your body making faulty connective tissue. It is something that is genetic that I was born with. There is no cure for it. Trying to say that I need to get some other treatment for it is not helpful because I can assure you even if it does exist, no one is talking about it in the dysautonomia community, so I do not believe it would be safe for use yet. There are some things in nature we aren't meant to mess with, like changing someone's genetic makeup after they were born, particularly when it is something we do not understand. That is the start to a horror movie.

I don't want this to be taken the wrong way, so bear with me with this explanation. Trying to say just get a cure for ehlers-danlos is like trying to say you can just get a cure for downs syndrome. I am not trying to compare the two outside the fact that they are caused by a defect in your genetic code. It's not something we have any control over. We are just made a little differently than the average person.

Medicine is advancing everyday, but that doesn't mean there is a cure for everything. Even when a cure to anything, not just POTS, EDS or another syndrome/illness, it takes years of safety testing to get it right to be approved by the FDA. Even after the FDA approves it to go on the market, issues are often found where they have to recall it and reformulate it again before putting it back on the market. We may think we know a lot about medicine, but just wait five, ten, fifteen years. Even in that short time frame we will think that we were so naive to think we knew all that we thought we did.

Things chronically ill people would like you to know:

You may have heard of the circle of grief. I know that is usually thought of when someone loses someone close to them. It's actually something that I even learned in school for Athletic Training for patients dealing with health matters. It isn't just for someone dying, it can be grieving the things like illness or injury. It can be applied for anything that has been taken from you. Denial, anger, depression, bargaining, and finally acceptance.

There comes a time where you do need to accept that this is your new life. It is okay to mourn the life that you had envisioned for yourself, but then you have to move on. It's okay to accept the reality of living with chronic illness. It does not mean that we won't be happy if a new treatment comes along, it just means that we aren't putting our lives on hold for a cure that may never come.

The final stage in the circle of grief is acceptance. When you've spent years of learning about your illness and trying all the treatment options you can find, you eventually have to accept that, at the moment, there is nothing else to be done. Keeping yourself waiting for a cure instead of accepting your illness and learning to live with it can be more damaging than good. That's not to say that if a cure were to come along that I wouldn't be thrilled, but that isn't something I can put all my hope and energy into.

If I can accept all of this, you should be able to as well. It is not your life that is being affected. Respect that I have done all of the research out there and see my doctor regularly to be able to manage my illnesses to the best of our abilities with the treatments out there.
Going to a 'specialist' isn't an answer. There aren't that many out there and they don't really know anything more than my personal doctor. They are all working with the same materials of studies done. Even in this day and age of modern medicine, the brain and nervous system are not understood. You know how there is more than 65% of the earth that is undiscovered and how there are probably things on/in the earth that we have no idea about to make that number even larger? It's the same with the brain.

I understand that things like this are said with good intentions, but it is hard to hear and is uncomfortable. It's hard for people who are not in the situation to understand that we are already doing all that we can. Unless something major changes, I probably won't get better. I won't say never because I don't know God's ultimate plan for me, but with the way things are currently going this is what my life is.

Medical anxiety is real. Earlier I talked about how POTS isn't very widely known or believed in and I had a doctor who laughed at me. Before every appointment there are these worries about them believing I have these problems. Even if they do, then there is the worry that there isn't anything that we can do to help it. It doesn't help that I'm probably the youngest patient for several of these doctors.
When I am going out and feel up to it, I like to put a lot of effort into making sure I look good. It feels like that is one thing that illness hasn't completely taken away from me. I say completely because the steroids and other medications I take make me swollen and gain a lot of weight which has been pretty hard for me. I've been able to lose some of what I had initially gained, but I'm also not back into my clothes.
I miss being active and wish that I could actually use my college degree. I watch everyone in my age group growing up and doing these great things while I stay in place.
I often say that I went from teenager to elderly and skipped the adult years.

This is not the life I chose for myself. I like to think that God has plans for me that I have to go through this in order to fulfill. It was His call, not mine.

As real as all of these are for me, I also want to explain that my health problems didn't come out of no where as it might have seemed. I have been having these problems all of my life. It was just that they became debilitating as a got older.
As a kid my joints dislocated easily. I got hurt easily. When I was in 4th grade I had to have knee surgery for an injury. At that time, I was the youngest person that doctor had ever operated on. I even had some of the brain fog back then.
As a teenager I hurt myself all of the time. Even outside of gymnastics, although that was what everyone attributed the injuries to. By the end I had really bad shin splints and had to see a chiropractor regularly because my back, ribs, and pelvis were constantly getting out of alignment.
I started getting severe TMJ pain that would leave me in tears in middle school. By the time I was a junior in college it was so bad that I lost the ability to eat anything solid for months at a time because moving my mouth at all was painful. I lived off of smoothies, protein drinks, and baby food for months at a time. Even speaking hurt. The jostling of just walking was painful, let alone be able to go workout. Now I know that this was caused because I have ehlers-danlos syndrome, made worse from poor oxygen perfusion from having POTS, and poor posture, but I had no idea at the time. There were a lot of these things that I thought was normal for everyone to go through until I started college and learned all about the human body.
I had been dealing with low BP, tachycardia, and stomach problems for quite some time, but I wrote it off as stress from other family members having major health issues and juggling that with school and working in the clinic for athletic training.
What I'm trying to get at is there have been signs since I was a little kid.
No, I wasn't stupid, I was dealing with brain fog. No, I wasn't lazy, I was genuinely exhausted.
Why did it only become debilitating when I turned 20? Ehlers-danlos is a progressive disorder, meaning it gets worse as you get older due to hypermobility causing damage to your joints. I also think that is was God's planning as I talked about earlier. That was when it was supposed to happen for His plans for my future.

Asking how I'm doing is fine. I will happily give you an update on my health, but please don't ask if I'm better yet every time you see me. It makes me feel awkward because I never have a good report. In reality, I've actually gotten a lot worse in the last year or so.

Really read that first one: Just because a treatment worked well for you or someone you know, doesn't mean that it will work for me.
I have had people tell me these drugs that I supposedly have to make my doctor prescribe because it will 'cure' me. I will smile and say I'll look into it. Every time this has happened, I've looked into the drug or treatment they recommended and it would not be good for me because of other health concerns I have, or unrelated to my heath problems all together.
My doctor knows the problems I have and will prescribe what he deems necessary.

When I am talking about my how my condition affects my life, I do not need to be told that I am not my illness. I know that, there is more to me than beta blockers and compression wear. I love makeup, both putting it on and watching videos about it! I love watching stuff on the paranormal and true crime. I'm all about the nostalgia stuff from when I was a kid. Even though I can no longer do gymnastics, I love watching it on TV.
The thing is, my illness effects all areas of my life, including these things.
I no longer have steady enough hands to be able to do a lot of the makeup things that I used to do. This is why I haven't done or shared any special effects makeup looks in the last few years.
Watching videos whether it be a TV show or something from YouTube is hard because it is hard for me to focus on it. Even when it is on my favorite things as I listed above. There are times that I have to watch the same video multiple times to catch/comprehend the whole thing.
So please, I know I am more than my illness. If I'm speaking about it, I'm just trying to give an understanding to what my life is like.

Yes. I do worry about taking so many medications, but they are genuinely something I need to have the little amount of function I do have. It's something that you have to decide for yourself if the pros outweigh the cons.
With chronic illness, we can only take things one day at a time. Sometimes even one hour or one minute at a time. Just because I was able to do something yesterday doesn't mean I will be able to today. My body likes to change the rules without giving me any notice.
Chronic illness fatigue does not compare to a normal person being tired because they didn't sleep well. Just think about what I was describing earlier, inadequate oxygenation can be exhausting. Pain can be exhausting.
Yes, it could be worse. I'm thankful that it isn't and pray that doesn't get that way.
Yoga isn't going to solve my problems. Particularly because I'm already hypermobile as it is. (Not knocking yoga, I think it's awesome, but it isn't necessarily what is best for me.)
Please do not judge a disability by it's visibility.
I'm glad your friend was 'cured' but each person and situation is different. That doesn't mean I will get better. It's something to hope for, but not something you can count on.
I didn't get sick because I did anything. It is a defect in my DNA, which is not something that can be 'fixed'.

Giving me suggestions on things that have helped you or a friend is fine. Just please do not try to force whatever it is on me. I will look into it and bring it to my doctor if I deem appropriate.

Just basic human empathy and understanding.

This 💙

My illnesses are not nearly as rare as you would think. It's just not understood or talked about. It was only 'discovered' in the '90's and is not currently taught in medical schools. Spreading awareness makes it easier for other people to be able to get diagnosed and get treatment for their symptoms.

If you would like to learn more about dysautonomia here are the links to the Dysautonomia International website, and The Dysautonomia Project website.

There are also a lot of posts from The Mighty that can really give you a better look into living with dysautonomia/POTS/EDS. Here are a few:

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