GC @ThePOTSPostman Twitter profile

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GC

3 months

I wish people understood brain fog is more than just feeling a little groggy. How would you explain your brain fog to others to get them to understand how hard it is to deal with?

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@ThePOTSPostman

3 months

I have a customer on my route who has MS. She lives in an apartment complex on the third floor of her building. The mailroom is a good 10 min walk from her building. I saw her mail piling up in her box and I got worried so I went to her building and knocked on her door…

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@ThePOTSPostman

5 months

Today I learned, 2 years later, a friend of mine tested positive for Covid 19 in December of 2021. They were asymptomatic at the time but didn’t tell any one of their positive testing. We had a Christmas party which they attended, knowing they were positive. A week later I…

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@ThePOTSPostman

4 months

New doctor: You're rather educated about your condition. Me: Yeah. I have to be. I’ve had to teach myself about my illness because doctors not only are uneducated about it but seem to think gaslighting is more appropriate than treatment.

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@ThePOTSPostman

5 months

Doctors say that to understand the fatigue of a person with a chronic illness, a "normal person" would have to stay awake for three days straight and then try to function. But yes please continue to tell me you are just as tired as I am.

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@ThePOTSPostman

6 months

Does anyone else with a chronic illness suffer from the fact that you are still the same motivated driven person you were before your illness but are just trapped inside a body that is constantly fighting against you, fatigued and just needing loads of rest?

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@ThePOTSPostman

24 days

When someone with chronic illness tells you they are fatigued please understand that it is different from ordinary tiredness. Our fatigue means we are drained, physically, mentally, and emotionally to our core . We have nothing left in us . Trying to function with fatigue…

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@ThePOTSPostman

4 months

I get frustrated when people don’t understand the feeling fatigued is not the same as being tired. So, how would you go about describing your fatigue to someone who doesn’t understand that it’s not the same as being “just tired” ?

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@ThePOTSPostman

3 months

Covid was taken very seriously in the beginning, listening to doctors, masks, etc. But now, with more research coming out showing all the long term damage it can cause, governments seem to just ignore it. What do you think caused the shift in the way governments see Covid?

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@ThePOTSPostman

2 months

The CDC hiding comments on their posts tells you everything you need to know about their decision.

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@ThePOTSPostman

1 month

Does anyone else struggle with grieving their old self? One thing healthy people don’t understand about chronic illness is the fact that many of us have to do this. Mourn who we once were. Mourn that certain activities we loved, we may never be able to do again. No one…

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@ThePOTSPostman

4 months

“People with chronic illness are lucky to relax all the time” I can assure you we are not relaxing, we are fighting symptoms every single day or trying to gather the strength to take on a big task we need to do. Trust me, we rather be out in the world doing what we love.

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@ThePOTSPostman

3 months

Chronic illness is not what you see. You don’t see the brain fog. The tachycardia so bad you can’t get up, the crushing fatigue. You don’t see our fight or flight system in over drive for 24 hours straight. What else don’t people see?

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@ThePOTSPostman

5 months

Something needs to change in the medical field. I called to see my doctor because I'm in a flare up and the next available appt is 6 months away. How is someone with a chronic illness supposed to function if they can't see their doctor when they need to?

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@ThePOTSPostman

3 months

Dr. Jeffrey Boris, a pediatric cardiologist at Children's Hospital of Philadelphia says: "To imagine POTS for yourself: number one, fast for 24 hours; number two, donate a pint of your blood; number three, go home and turn your thermostat up to 100 degree, number four, stand…

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@ThePOTSPostman

3 months

When someone who is chronically ill says “I’m okay,” it often doesn’t mean they are free from symptoms or feeling well in the conventional sense. Instead, it can mean: 1. They are managing their symptoms at that moment and don’t want to burden others with their struggles. 2.…

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@ThePOTSPostman

2 months

Does anyone else with chronic illness find their symptoms to be 10x worse when they don’t get enough sleep?

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@ThePOTSPostman

3 months

Why do doctors always jump to anxiety when they can't figure something out? Do they think patients actually want to be diagnosed with a chronic illness? No, they know that something is off in their bodies and they need answers, so please listen to them.

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@ThePOTSPostman

3 months

What’s your biggest pet peeve when it comes to chronic illness? For me it’s when people tell me being tired is normal.

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@ThePOTSPostman

5 months

And yes, for those asking were certain it was this friend because I worked from home at the time, didn’t go anywhere the week leading up to the party and after the party it was business as usual so I stayed home working, I only ever had contact with those at the party during the…

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@ThePOTSPostman

3 months

I don’t care if you have Covid, the flu, a cold, if you do not feel well I don’t want to be anywhere near you! Getting sick = my POTS getting worse and I don’t want that!

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@ThePOTSPostman

3 months

Next time someone is belittling your POTS diagnosis and why you’re so fatigued, please remind them “POTS patients use about three times more energy to stand than a healthy person”

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@ThePOTSPostman

29 days

What's one thing you wish people without chronic illness understood about the daily struggles you face? For me, we don’t get to pick and choose what days we feel sick or get flare ups, it just happens when it happens.

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@ThePOTSPostman

4 months

Do others notice that when you have a ongoing health condition, people often assume you haven't already tried everything possible to manage it?

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@ThePOTSPostman

4 months

No one with chronic illness dreams of being stuck in their house, resting all the time. It is not a choice and it's not a vacation. People with chronic illness are just like you, with hopes and dreams for their futures, but sometimes their body gives them no choice.

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@ThePOTSPostman

3 months

What is the worst symptom of your chronic illness? For me it’s my fatigue, it’s soul crushing.

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@ThePOTSPostman

5 months

It gets old trying to explain yourself every time. Anyone else have to deal with this?

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@ThePOTSPostman

2 months

I don’t think many people understand what is impacted when your autonomic nervous system is dysfunctional. Here a just a few things the autonomic system controls. -Circulation -Temperature regulation -Sweating -Cognition and short-term memory -Digestion -Exertion -Ability to…

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@ThePOTSPostman

27 days

Some of the worst things I’ve noticed about chronic illness are. Knowing there is no cure Unsolicited advice No one really understanding Faking being okay Feeling unreliable Feeling awful 24/7

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@ThePOTSPostman

4 months

Does anyone ever miss the freedom to be spontaneous without having to think about the impacts it will have on your body?

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@ThePOTSPostman

1 month

The notion that everyone gets the same 24 hours in a day to be “productive” overlooks the fact that chronic illness can drastically affect how those hours are utilized. Those with chronic illness have to manage symptoms, doctor appointments, and treatments. These can consume…

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@ThePOTSPostman

2 months

I love when people without chronic illness think everyday is the same for us. Unfortunately it's not, we have no idea how we will wake up feeling. We might even wake up feeling great and then 2 hours later get a flare up. This is why it's so hard for us to make plans.

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@ThePOTSPostman

3 months

A virus that often gets unspoken about in today’s world is EBV. One of my doctors believes EBV caused my POTS. I’m going to try to explain the best I can from what my doctor told me. EBV goes dormant in the body and never goes away, but reactivates during times of stress or…

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@ThePOTSPostman

2 months

I used to think it was normal for me to get dizzy and go a little dark in the eyes every time I stood up. Wasn’t until my diagnosis with POTS that I realized it is in fact not normal. What symptom did you think was normal before you found out it was part of your illness?

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@ThePOTSPostman

3 months

How do you grieve the old you? The you before you were diagnosed with a chronic illness. The active, outgoing, energized person that you once were. The you that was willing to do everything and anything. How do you just let that part of you go and move on?

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@ThePOTSPostman

3 months

Things you shouldn’t say to someone who has chronic illness. "People your age don't get that sick” "It can't really be that bad” “You are just being dramatic” “If you just stopped thinking about it, it would go away” What else do you hate hearing?

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@ThePOTSPostman

6 months

That chronically ill person you know has probably never answered a "how are you" honestly. They probably told you "it is what it is", laughed and trivialised their pain because their real answer was long, traumatising and intense and they didn't want to make you uncomfortable.

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@ThePOTSPostman

4 months

Raise your hand 🙋 if you've ever missed telling a doctor about an important symptom. Simply because you're so used to it you kind of just thought that was what bodies do.

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@ThePOTSPostman

16 days

Those who have chronic illness will have fatigue, pain, tachycardia, dizziness and so much more. Yet some days they will still act completely normal and pretend everything is normal and say they are“fine”. Meanwhile everything is not fine. So please be kind.

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@ThePOTSPostman

3 months

Are there others with chronic illnesses who relate to feeling like they’re still the motivated, driven person they were before their illness? But you are now confined within a body that constantly fights against you, leaving you fatigued and in need of extensive rest?

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@ThePOTSPostman

4 months

Saw my primary doctor for blood work, she had an interesting theory about Covid. She believes the virus goes dormant much like EBV and can be reactivated during times of stress or a weakened immune system. Could be a reason so many suffer for so long ? What do you all think?

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@ThePOTSPostman

4 months

POTS is a NOT a heart condition. Since POTS is a form of autonomic dysfunction (dysautonomia), it is a neurological condition that affects heart rate, among other things. Most people with POTS actually have a healthy heart.

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@ThePOTSPostman

4 months

If you could give doctors one piece of advice about dealing with chronically ill patients, what would it be? For me, I’d ask them to just listen to us, we know our bodies better than anyone else, we aren’t anxious, we know when something isn’t right.

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@ThePOTSPostman

2 months

Things not to say to someone with chronic illness: “At least it’s not cancer” “It could be worse” “You’re lucky you don’t have to work” “You don’t look sick” “Why don’t you try this” “Don’t think about it”

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@ThePOTSPostman

5 months

People with chronic illnesses will have stomach cramps, headaches, joint pain, muscle pain, fatigue, nausea, dizziness and more every single day but will still act completely normal in public. Remember you never know the pain someone may be in just by looking at them.

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@ThePOTSPostman

4 months

POTS/dysautonomia symptoms that rarely get spoken about: Sensory overload Night sweats Adrenaline dumps Tremors Delayed or rapid gastric emptying Mood swings Urinary urgency

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@ThePOTSPostman

5 months

Getting a POTS diagnosis is probably one of the oddest things, first they don’t believe you, then they will strap you to a table and try and make you pass out. Then when it’s all said and done and you have your diagnosis they will tell you to have more salt and water.

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@ThePOTSPostman

3 months

Just because someone is used to their symptoms with chronic illness doesn’t mean it still isn’t hard to deal with. To you we may look fine. But please trust us when we tell you there's a battle going on inside us every single day.

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@ThePOTSPostman

3 months

I think one of the worst aspects of chronic illness is the uncertainty. Day to day, hour to hour. Feeling good one moment and 5 mins later getting hit with a wave of symptoms causing you to need to sit or lay down. It can be exhausting and overwhelming at times.

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@ThePOTSPostman

2 months

Everyone always focuses on the tachycardia aspect of POTS, but it’s so much more. It’s fatigue everyday. It’s aches and pains. It’s blood pooling when you stand. It’s temperature dysregulation. It’s adrenaline dumps. It’s non restorative sleep. It’s brain fog. It’s so much more

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@ThePOTSPostman

2 months

Please remember there is a lot you don’t see to chronic illness. You don’t see the pain. You don’t see how much we have to rest. You don’t see the racing HR when we stand. The dizziness when we walk. You don’t see how hurt we are when others down play our illness. You…

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@ThePOTSPostman

27 days

Just some symptoms that you may not realize are part of Dysautonomia. Excessive yawning Painful hiccups Elevated sense of smell Fast hair/fingernail growth Brain zap Excessive itchiness Excessive ear wax Sweaty feet

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@ThePOTSPostman

3 months

According to a New York Times article, here are 5 signs of medical gaslighting. •Continual interruptions during appointments •Symptoms minimized or downplayed by the provider •Refusal to order necessary imaging or lab work •Feeling of rudeness, condescension, or…

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@ThePOTSPostman

2 months

Friendly reminder to those who suffer with a chronic illness. You already have a limited amount of energy. Stay away from those people whom rob you of that energy.

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@ThePOTSPostman

2 months

So one day isolation. But you’re still contagious. How does this protect anyone who is immunocompromised?

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@ThePOTSPostman

2 months

If someone with chronic illness tells you they are exhausted, don’t ask why. Don’t ask what they have been doing or if they are sleeping enough. We don’t have the same energy expenditure as someone who is healthy. Just accept they are exhausted.

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@ThePOTSPostman

2 months

Before I became sick my phone was always blowing up with friends texting me. Now, I can count on my hands the number of friends I have that actually text me to check in on me. You really find out who your true friends are when you become sick.

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@ThePOTSPostman

3 months

Please don't tell a chronically ill person that it could be worse. We may not have it as bad as someone else but that doesn't invalidate what we go through. Don't let someone who doesn't know what it’s like to be in your shoes tell you the degree of your problems.

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@ThePOTSPostman

2 months

Some things you should know if you don’t suffer from a chronic illness We hate canceling plans or calling into work sick and we feel guilty when we do. No matter how much you tell us you understand, in reality, you don’t, and you never will until you experience it. We want…

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@ThePOTSPostman

2 months

One of the hardest parts of chronic illness is the waiting. Waiting for answers. Waiting months to see a new specialist. Waiting to see if a new medication will help or make things worse. Waiting for your body to heal. Waiting for friends/ family members to call or text.…

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@ThePOTSPostman

3 months

Has anyone actually tried radical rest to try and help your body rejuvenate? Doing nothing, I mean nothing, no physical and mental activities and just resting?

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@ThePOTSPostman

4 months

What can trigger POTS symptoms? -Standing -Showering -Stress -Lack of sleep -Certain foods -Getting sick -Dehydration What else??

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@ThePOTSPostman

2 months

Please remember when you see someone with chronic illness you’re not seeing the full picture of our illness. You see us on our good days, where our symptoms are manageable. You do not see us on our bad days, a lot goes on behind closed doors with our bodies, more than you could…

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@ThePOTSPostman

4 months

Yes a lot of us chronic illness people are faking. We are faking being well. We are faking through the pain. We are faking that our life is the same as it used to be. We are faking that we are used to our bodies betraying us and it will all be ok.

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@ThePOTSPostman

4 months

When you’re chronically ill everything is a risk/reward calculation. The risk is putting your body through pain and a potential flare up. The reward is you get to participate in the activities you love doing with friends and family.

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@ThePOTSPostman

2 months

You never get “used” to chronic illness. Sure you may learn to manage symptoms, but you never get used to waking up every day feeling awful. You never get used to the relentless pain, the crushing fatigue, the trial and error of new medication. You never get used to this.

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@ThePOTSPostman

1 month

Chronic illness sucks in the sense that I’m still the exact same hard working, get after it individual that I always was. That part of me is still inside of me. Yet I’m held back daily by my symptoms.

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@ThePOTSPostman

4 months

For anyone wondering what blood pooling might look like in POTS. These are a few of the photos I documented to show my doctors while trying to get answers.

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@ThePOTSPostman

3 months

Your illness isn't your fault. There isn't one single thing that you did that led you to being sick. Stop blaming yourself please.

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@ThePOTSPostman

1 month

Chronic illness is a lot like a full time job. Except instead of paying you a salary, you end up having to pay for it. From medications, copays, procedures, missing work. It’s a job no one wants to have.

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@ThePOTSPostman

4 months

Everyone always talks about heat intolerance, but does anyone else suffer from cold intolerance? My body can’t handle this cold weather like it used to.

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@ThePOTSPostman

2 months

Chronic illness effects more than just our bodies: We also experience… The Loss of friends and family. Financial strain from medical costs. Interference with our ability to work. Loss of who we once were.

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@ThePOTSPostman

4 months

Many patients with POTS/dysautonomia struggle with basic functions that people take for granted. -Getting out of bed -Showering -Standing in a line -Watching TV What else?

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@ThePOTSPostman

2 months

Many fail to realize that dysautonomia can impact the entire body. Here are some examples of different body parts and the symptoms dysautonomia can cause. The Brain: Fatigue Brain fog Lightheadedness Fainting Eyes: Dryness Sensitivity to light Dysfunctional pupils Blurry…

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@ThePOTSPostman

19 days

POTS is very real and an invisible illness, meaning there are many things you cannot see. You can’t see the tachycardia. You can’t see the brain fog and dizziness from the lack of blood to our head. You can’t see the vision dysfunction. You can’t see the dizziness. You can’t…

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@ThePOTSPostman

5 months

Dr. Jeffrey Boris, a pediatric cardiologist at Children's Hospital of Philadelphia says ; "To imagine POTS for yourself: number one, fast for 24 hours; number two, donate a pint of your blood; number three, go home and turn your thermostat up to 100 degrees Fahrenheit; number…

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@ThePOTSPostman

2 months

They never tell you guilt would be a symptom of chronic illness. Guilt for bailing on plans, for calling out work, for not having enough money. You hope that you're able to do the things you plan to do but the unpredictability of your illness always shows its ugly face.

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@ThePOTSPostman

5 months

POTS is so much more than a high HR. It's unfathomable fatigue, its pain throughout your body. It's walking through life feeling drunk all the time, having brain fog so bad you forget where you are. It’s gastro pain, blood pooling uncontrollably, tremors, visual disturbances.…

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@ThePOTSPostman

28 days

One of my worst symptoms that I have “Coat hanger pain is a symptom of dysautonomia that involves suboccipital and paracervical pain in a coat hanger pattern in the neck and upper back.” It is said to be caused by poor blood flow to the large muscles in the neck and upper back

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@ThePOTSPostman

1 month

Temperature dysregulation is awful. I wake up shivering, as if I stood outside in the snow for 12 hours. 🥶 It takes about 4 hours for my body to warm up. My body then warms itself up too much, where I start to overheat, and I need to try to cool off. It’s an endless cycle

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@ThePOTSPostman

3 months

Symptoms of Dysautonomia that may get overlooked: Dry mouth Sensitivity to light Sluggish pupils Frequent urination Tooth decay Difficulty swallowing Increased allergies Increase/decrease in sweating Vomiting Bloating What did I miss?

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@ThePOTSPostman

3 months

Living with chronic illness means dealing with things we never asked for. We never asked to be out of work. We never asked to be housebound. We never asked to lose best friends and family. We never asked for our bodies to betray us.

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@ThePOTSPostman

3 months

I’m tired of people telling me to just stay positive. Here’s a reminder you don’t have to stay positive all the time with an illness that affects you so negatively 24/7.

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@ThePOTSPostman

6 months

Does anyone else mourn the person they used to be before their chronic illness took over? Not just the life they had, but actually who they were.

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@ThePOTSPostman

2 months

Fatigue from chronic illness feels a lot like being trapped in wet cement. Every motion requires twice the effort. Your steps feel heavy as if you are being held down. The more you try to battle getting through it, the harder it gets.

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@ThePOTSPostman

2 months

Friendly reminder POTS symptoms tend to get worse when bad weather is moving in. Barometric pressure changes have a huge impact on our bodies whether or not you suffer from POTS, but with POTS symptoms may worsen. Depending on the pressure system our blood vessels may dilate…

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@ThePOTSPostman

5 months

What’s something you miss the most doing before becoming chronically ill? For me it’s working out, I can’t work out the way I used to, at least not yet, my body just won’t let me do it.

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@ThePOTSPostman

3 months

73% of POTS patients report having seen at least 1 physician who didn't know what POTS was. We need more awareness and education.

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@ThePOTSPostman

2 months

POTS patients often feel at their worst in the mornings upon waking. But why? One big reason is because we are waking up dehydrated. Our kidneys remove excess fluid while the body is lying flat. Usually why we have to pee when we wake up. This usually isn’t a problem for…

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@ThePOTSPostman

4 months

Living with a chronic illness is so hard. Whenever i talk about it i always feel the urge to downplay it and assure myself and other people that it's "not that bad." But it is that bad.

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@ThePOTSPostman

3 months

I wish others understood just because I look able bodied and have a full time job doesn’t mean I’m not struggling every single day. I haven’t gone a day without symptoms in over a year. Dizziness, tachycardia, massive amounts of pain. I struggle anytime that I’m upright.

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@ThePOTSPostman

2 months

Things that are not a choice when you are chronically ill. Flare ups. Needing to rest. Needing medication. Struggling to work. Needing accommodations. Doctor visits often.

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@ThePOTSPostman

2 months

So many people take their health for granted. They don’t realize how quickly it can be taken from you.

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@ThePOTSPostman

2 months

@1goodtern everyone should be masked around anyone who is immunocompromised in a damn hospital setting wtf

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@ThePOTSPostman

4 months

Those with POTS/dysautonomia often feel WORSE during bad weather. Why? Low barometric pressure, which usually occurs before or around the time storms move in, can cause an increase in symptoms. One reason for this is that our blood vessels dilate when the pressure around us is…

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@ThePOTSPostman

2 months

I don't discuss my illness online for pity. I discuss it so more people can learn about it and to give others who suffer from chronic illness a place to talk and show that they are not alone.

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@ThePOTSPostman

2 months

You ever hear this? "I wish I could stay home whenever I wanted so I can relax and do nothing" I can assure you, you don't. Trust me. When we are home we are fighting symptoms that are a 10/10. It's not a cozy day. It's a battle to get our body back to a normal baseline.

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@ThePOTSPostman

2 months

What do you wish more people understood about how it is living with a chronic illness? For me, i wish they knew how unpredictable it is, how you can feel fine one minute and completely crash the next.

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@ThePOTSPostman

2 months

POTS, long covid, fibromyalgia, MCAS are all acknowledged as real and debilitating illnesses by the NIH, filled with medical experts. Yet trolls and health “gurus” on social media with zero medical knowledge will continue to spread the word that these illnesses aren’t real.

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@ThePOTSPostman

4 months

Have any friends or family members tried to invalidate your illness ever? “My HR gets high to when I stand it’s normal.” “Everyone gets dizzy when they stand”

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