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Living with POTS is no joke! Every day you feel like crap but you have to keep going forward with your life. You are so strong. What healthy person do you know can walk around and look happy, but on the inside they are about to pass out, their chest hurts, they are about to vomit, they are so tired, they can’t think well, their head is pounding, yet they just look like a normal healthy person? Dang people!
#Spoonie #potswarrior #PosturalOrthostaticTachycardiaSyndrome #potsisreal #potsiestrong #LivingWithPOTS #potsdoesnthaveme #POTSLife #AutonomicDysfunction #POTS

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New to the group #LivingWithPOTS #spoons

I've been a Potsie for about 11yrs, diagnosed for 5yrs. I was symptom/med free for about 4yrs. Symptoms kicked in about 8 months ago. Gotta love the never knowing when it's going to hit. I'm a very positive person most days. Lately not so much. Just when I thought I was on the upswing, WHAM! Thankfully I have a new doctor who is supportive and getting me referrals to neuro, gastro and nutritionist. I'm ready to feel normal. I feel like I'm a burden on family and friends. They are an amazing support system. Don't know how my hubby does what he does. He's by my side through it all. It would be awesome to hear from others like me. With all the support I have I still sometimes feel I'm alone. They see what I'm going through but thankfully, don't know how awful it really is to live it. I'm here for anyone who wants to talk/rant/cry. We have to band together!

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Hewwo! Always looking for spoonie friends (●´□`)♡🥄 #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #CripplePunk #Spoonie

Hewwo! Here’s my introduction post! I’m toast, I have EDS, POTS, PTSD, CVS, and suspected autism. I really appreciate some of the posts I’ve seen on here, I’m a wheelchair user and service dog handler. I’ve been learning to adjust to the new level of symptomatic that I’ve become. I enjoy menhera/yamikawaii fashion and cosplay, and work as a self-employed cosplay photographer and commission artist. My ig is @quirkytoastcosplay, my dms are always open!
(*´꒳`*) #eds #EhlersDanlosSyndrome #potsiestrong #wheelchairuser #cyclicalvomitingdisorder #servicedogs #Spoonie #PosturalOrthostaticTachycardiaSyndrome

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Does anyone get severe vertigo out of nowhere?

I get waves of severe vertigo, shortness of breath, and fatigue out of nowhere. I went a month without feeling this way but lately I’ve been having episodes like this everyday. Does anyone have any suggestions on how to help prevent this? #LivingWithPOTS #POTSLife #potsielife #potssyndrome #Vertigo #Fatigue #potsiestrong

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I quit my job today. Again.

I told myself that when I quit the hospital, that it would be the last time that my health would dictate my job. That I’m a nurse, darn it. Sleep and self-care are for mere mortals. Need for such things disappeared a little over ten years ago when I received the Nursing License that hangs on my bedroom wall. Right?


I lasted a year and five months. More like a year and change, if I take out the time that I was out for neurosurgery.

And things are better. But they aren’t better enough. I have no more reserves to pull from. Three years of fighting the stubborn decline of my body has taken its toll. My mutation does not make me super strong. I’m super a whole bunch of things, none of them pleasant,.

I am super-tired and, more often than I’d like, super-scared. I’ve spent my adult life comforting and saving. Now I must step back and ask the same from others.

Metamorphosis is painful. Change does not come without cost. I did not choose this change, but it is happening. And I will change.

I can’t control much. Even my best efforts will not prevent life-altering symptoms if the weather or temperature are wrong, or if my body decides it doesn’t like someone’s perfume or the way someone cleaned their carpet. And I may be useless for days afterwards.

I can change into someone who is bitter, who is angry about what has been lost. And trust me, that is there. I miss who I was. But that person is gone. I can’t bring her back. All I can do is move forward. This is a new chapter, a new door. An adventure, for a woman who has always been careful and unadventurous. Who has always needed to be independent and in control.

I have no idea what tomorrow will bring. And I am learning to roll with it.

I feel so weak, like I am falling apart at the seams. But I never knew that I could be strong enough to take what I have been given and what I have lost these past three years. Healthy me would have thought I would break under such stress. And I have broken, many times. I never knew, however, that I would find the strength to get back up.

I will break. I will cry. But I have survived all of my hard days. I will continue to do so.

Each moment is a new battle, but it is also a new opportunity. And I continue to grow.

I don’t love what my body has become. Life is wrapping me in a cocoon of I can’t escape. But I am proud of the person it is making me. In the end, I will emerge. And I will be a butterfly.

#MastCellActivationDisorder #potsiestrong #LivingWithPOTS #HypermobileTypeEDS #EDSers


🥳New Years Illness Resolutions🥳

1. I will listen to my body as much as possible
2. I will be open and honest about my feelings with people
3. I will not let others decide what I can and cannot push through
4. I will not let others decide how I feel
5. I will not do what others want me to do if I’m not feeling up to it.
6. I will not apologize for my illness
7. I will not hate myself or put myself down for my illness.
8. I will try my best to move forward and find more answers.

I will try to make a video explaining each one of these on my YouTube channel. Go subscribe! comment that you came from the Mighty! 🥳


#Dysautonomia #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #potssyndrome #potsiestrong #Potsie #Pain #seizurelikeepisodes