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Oh boy. I guess I can try to sum it up as difficult, tiring, slow going. Should I go through a day in the life?

Wake up (for probably the third or fourth time, since sleep is often disjointed). You’ve got the sweats even though you’ve had a fan on you all night. Sit up very slowly as your joints and head start to ache and your heart starts palpitating. Hopefully have someone waiting to help support you when you first stand up. 

You may or may not get to finish breakfast, depending on the nausea and stomach cramps. Spend the day sitting. It’s better if feet are elevated and wrapped in a heating pad. Have a fan nearby. Turn it on. Get chills three minutes later. Turn it off. Get hot flashes. Turn it back on. Off. On. Off. On, all day. The constant noise of the fan will probably give you a headache. 

Hydrate with lots of water. Get bloated, have cramps and an upset stomach. Standing up so you can use the bathroom makes your vision go black and your heart start racing, so you’ve probably got to stop and rest a couple times on the walk over there. Rinse and repeat throughout the day. (It takes five times longer for me to walk somewhere than the rest of my family; we’ve timed it)

Wipe yourself down and change clothes because you’ve sweated through them. See if you’re up for any other kind of hygiene. Probably not. You’re already shaking and your feet are burning from standing too long. Get super sluggish and have brain fog from the afternoon to evening.

Take sleep aids for the insomnia, put on a brace so your bones don’t dislocate in your sleep, go to bed with the sweats, turn on the fan, and wait for your heart to stop palpitating so you can sleep again. 

There are probably some Potsies out there who are coping a little better or a little worse than I am, but that’s an honest look at how it goes for me. ^^ 

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So like i have this problem where I get a ton of random aches and pains in my legs. And my left knee gives out randomly. Like I’ll just be walking and then my leg gives out beneath me and I’m on the ground. We think both of these problems are related to my flat feet, but there’s nothing structurally wrong with my knee, so the orthopedist thinks there might be nerve damage or something and told me to see my general doctor. For awhile I couldn’t walk without a cane because my knee gave out so much, but then it got better. Now it’s back again, and I’m just so frustrated at my body.

I’m doing everything I’m supposed: I go through my PT exercise’s almost everyday, stretch multiple times a day, I ride a stationary bike in my basement everyday(actually bikes are a no-go because of POTS). I’m afraid to go on a walk outside(also because of the POTS), and I’m afraid to carry things. Sometimes I have to crawl places because I can’t walk. I’ve had to crawl at school because I was too tired to get up with a backpack on(because of POTS).

I just hate my body so much sometimes. I have type 1 diabetes, Graves’ disease, whatever weird thing makes my knee give out, so many random aches and pains, near continuous tension headaches, anxiety and a mood disorder that’s apparently so whack my psychiatrist can’t figure out what it is. I’m 18. With corana I don’t see people as much so I don’t get as jealous, but before I would just get so mad. People would complain about the pettiest things, and I would be like the insurance company won’t approve new CGM(continuous glucose monitor) sensors to be sent until I use all of my supply, and I forgot my glucose meter at home so I have no idea what my blood sugar actually is, but I feel like it’s high, so I really hope when I get home and test it I won’t have to go to the ER. I just hate my body so much sometimes.

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I’ve been sitting on the floor with the kittens a lot and it’s been an unfortunate reminder that I still have stand-up-and-pass-out disorder

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6 days until my autonomics appointment!

I’ve been waiting 6 months for this shit and 5 months for the results of the autonomic function test because, despite autonomics saying my pcp can tell me what it means, not even my cardiologist wants to give an answer

I am ready to to finally start getting answers for what is wrong with me cause cardiology thinks it’s POTS but my blood pressure doesn’t quite align with that

Also apparently they also deal with joint hypermobility (which logically I get but like come on they deal with the autonomic nervous system) and despite my cardiologist diagnosing me with generalized hypermobility she won’t tell me shit

I’m just so close to start to get answers and these fuckers better at least tell me that they’re trying. That’s all I ask for

It’s gonna be real funny (and sucky) if they decide to put me in the undiagnosed diseases research area. My dad is there and I have a feeling that they would try to find a connection and no. I’m not dealing with his bs more than I have to (also he has a shit ton of tests done. Like when my patient account was linked to his he would have a test result nearly ever week. Just how.)

(More on that tangent. Like I’m struggling to get them to test my thyroid hormone levels. I only have half a thyroid and it’s been over a year since they last checked. Also my health started to consistently be getting worse after the surgery but no one fucking cares about that correlation [I know from research the thyroid doesn’t call the issues I’m having but two things, one that tumor (thankfully not cancerous) apparently had blood flow coming to it. Two apparently there’s a large chance that the trauma to my body from surgery triggered something that I’m already predisposed to)

Long rant but I’m just fucking tired of being passed around in a loop and nothing besides another ekg or echo being done. The most done was a holtzer monitor for a day and the autonomic function test that NO ONE is telling me SHIT about

I know that I’m lucky that doctor’s are believing what I’m saying and that I’m close to an autonomics clinic but I’m just frustrated

People say life is stranger than fiction and for once I don’t want that to be true

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THE PROBLEM WITH POTS is that its too fucking hot so my veins are wiiider open than usual bc everything is iggg so my brain is stupid bc no blood so im laying naked with mg legs elevated to get the blood back to my brain but now my legs alsep

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So I got POTS(postural orthostatic tachycardia syndrome) and my ability to function varies drastically from hour to hour. My dad asked me to come upstairs to set the table, and when I get there I’m just suddenly dizzy. I can’t set the table and I have to leave halfway through dinner to sit on the couch and bury my face in the back of it to keep it together. A bit later everyt less fuzzy and I play cards with my family and eat a bag of very salty chips and I’m still a little funny but mostly good. I go with my aunt to pick up food from her apartment and drop it off at a food pantry drop off. Pulling into her parking lot I suddenly just can’t. I’m dizzy, I’m nauseous, I’m can’t think. She gives me her keys, and I collapse on her couch. I’m done. It was just such a good day and I’m so mad that I literally can’t go for a 3 minute drive without loosing it.

Tldr - my body’s a mess

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I went for a 2.8 mile hike in some Florida wetlands today. It was slightly strenuous, but the path was mostly flat and well-trodden. My muscles aren’t particularly tired and my joints held up spectacularly! (Though my knees did have the assistance of some gentle braces.)

My POTs, on the other hand, is a bastard. 2 hours post-exercise my heart rate is still

  • 102 bpm laying in bed (normal is 65)
  • 116 bpm sitting up and doing nothing (normal is 80)
  • 135 bpm standing (normal is 85)

ARG. This is why I don’t exercise. There’s always SOMETHING going wrong in my body. This means a major fatigue crash tomorrow… sigh.

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Alright this back pain at night can really fuck off, it’s making my head hurt. It’s been cramping my style all week. An then I can’t sleep because I keep getting restless.

Body can you work right for like 2 seconds, please. Just let me get some sleep, just enough so I wake up not wanting to kill everything.

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