P.O.T.S.

A not so serious blog about managing life with P.O.T.S. Very infrequently updated & inactive at the moment. Stray strong, fellow spoonies. <3

[sunflower-cane]

Im convinced the only thing longer than the list of problems EDS causes is an anti-sjw’s blog description.

[clockworkcrow]

interesting comparisons i have come across about living with POTS:

- a potsie’s body reacts to standing the way a healthy person’s body reacts when they’re either a) extremely dehydrated, or b) bleeding out

- the effect of dehydration through the night on how potsies feel when they wake up is the equivalent of a hangover for a healthy person (so basically, we always wake up with hangovers)

- potsies’ heart rates when they stand up are the heart rate a healthy person would have during an extreme cardiovascular workout

[fogblogger]

what does diamox help with? I'm on florinef rn for pots but I still get headaches

Okok so there’s this woman named Dr. Diana Driscoll (I highly recommend looking her up, 100%) and one of her theories is that a lot of people with POTS also have/the POTS is caused largely by having too much spinal fluid surrounding the brain (I think there’s a name for it but I cannot for the life of me remember what it is). So you definitely wouldn’t think to put someone with POTS on a diuretic, but she tried it (she also has pots) and her theory was right for herself (so she opened a thing called pots care, the website is potscare.com and started trying to help people with it and it helped them A TO. Basically you pee out all your extra spinal fluid and your brain gets a break from it all. So I was put on the diamox two days ago, on a whim just to see if it did anything, and basically had immediate results. I usually wake up with horrible headaches (they call it angel wings i think, the headache feels like all your muscles are so intensely stiff all down your back and shoulders, like wings, and up into your head and even maybe your face and all that, so like everything hurts, I’m sure you know the feeling), and like i couldn’t sleep, i couldn’t even wear jackets because they felt so heavy on my neck and i felt like i was being weighed down all the time. that is COMPLETELY gone. I have NONE of that when I wake up. NOTHING. Like literally I don’t have that at all. It’s my third day on it (I’m on the pediatric dose because my body sucks and stuff and i only take it in the morning for right now) and I am almost completely not foggy (I haven’t been unfoggy for almost five years at this point), i have so much energy (i stayed up until 12 last night and i wasn’t counting down the seconds until i could go to bed, usually it’s like torture for me), i did a ton of stuff, i went all over the place, i drove and didnt feel like i couldn’t pay attention and my head didnt feel like it was pushing down on me the entire time i was upright, i haven’t had to lie down once today and it’s almost 3 o’clock, seriously. My ears aren’t ringing like they usually do, I can see better (I always felt like I had a cloud in front of me and couldn’t see anything right, idk) I feel like a new woman. I highly suggest trying it, if it doesn’t work you can just stop taking it, it’s completely simple and non committal. Seriously. Really. Like. I’ve never ever had anything like this before. I take florinef, too and it’s all good with that. Also have you tried midodrine? if not i suggest it a ton a ton, it changed my life. 

This morning I woke up and was fully functional before I even took my morning meds. It’s a big deal. 

[fogblogger]

please visit potscare.com

[pots-gif]

My doctors in Germany don’t even know what POTS means and I have yet to find one who is really interested in listening and helping me. I’m so exhausted. The blatant ableism I have to deal with every day is just too much at the moment.

[pots-gif]

I was like wow my pots has been better lately then I stood up to go brush my teeth and used my fitbit to check my heart rate it was 134 bpm compared to its usual mid 60s to low 70s. Never mind not better 😂😂

I know that feel - I am so sorry! Lots of spoons to you lovely anon <3

[pots-gif]

How to workout and get a toned body as a spoonie who is pretty much exercise intolerant and has to deal with a racing heart after only one squat? Help

[spooniestrong]

Hi! I was wondering if I could get some suggestions on jobs for spoonies? I don't have access to good medical care, but I have a lot of issues that prevent me from being able to do manual labor, and really bad social anxiety. Since my abusers and my health screwed up high school, I'm having a lot of problems with getting into college, too. Lately it seems like everywhere I look, I hit another wall. Do you have any suggestions or advice? Thank you and have a nice day. :)

How about a work from home deal? Apple Inc. has at-home advisors that do customer service. Perfect for Spoonies, and they provide the computer! They pay pretty well and their benefits are decent. Only downside is that they own your soul, but if you’re okay with that…

Spoonies, any other suggestions?

[spoonie-living]

Oh, nice–this is a new one on us! More info here.

To add to the list, we’ve got a number of suggestions in our Work From Home tag readers might enjoy :)

[spoonsperhour]

Every Doctor Out There Should Know

Everyone’s “sick” is different. No two people will react in the exact same way when they are sick or injured or what have you.

• If I came to the hospital, I’m sick. Period.

• not every sick person looks visibly sick

• you have never seen me healthy so how do you know I do not look sick maybe I look very different when I’m healthy

• just because someone put makeup on does not mean he or she feels well

• if your patient says her pain is a 10, believe her

• if your patient says his pain is a 4, believe him

• some of us could find something to laugh about even if we’ve had our leg traumatically amputated

• some of us might scream for 10 hours if we broke our toe

• some people are very loud and vocal when they’re hurt or sick, moaning or whining or screaming.

• but some people are very quiet when they are sick

• some people are scared of hospitals and doctors and might freak out or have anxiety to be there

• some people are not freaked out by hospitals and even like them and like being in them and want to work in them

• some people have a high pain tolerance

• some people will literally cry when you check their reflexes

• some people would rather stay overnight then risk having to come back

• some people just want to go home

• some people would prefer to have the curtain open and watch the rest of the people come by

• some people don’t want to see anyone else

• offer pain medicine- not everyone is willing to ask, even if their pain is a 10

No matter what, you have to remember. If I am in this hospital, any hospital, I’m sick. I came here for a reason. I don’t just enjoy spending my days as a pincushion. You should always take the patients concerns and behaviors seriously.

[potsiespoons]

(In case you have difficulties reading the little words pointing to things because I MADE A MISTAKE and colored the couch the same color as our couch, they say:

Heating pad

Favorite movie playing on repeat

Chocolate-chip cookie

Bag of chocolate chips

Aaaaand pain killers

Now onto the explanation for this comic.)

I know this doesn’t apply to all of you, but it must be addressed, because I have seen this question so many times on POTS groups on Facebook: “Does anyone else feel worse on their period??” The answer is, and always will be, YES! Healthy people feel worse when they’re having their period, of course we’ll feel worse, too! I mean, there is blood coming out of you–you’ve already got issues with blood pressure and circulation, so that’s definitely going to make you feel worse. As an added bonus, you’ll likely be in more pain, and pain is utterly exhausting. 

Periods suck for healthy people. They really suck for unhealthy people.

The best thing you can do to try to help your symptoms is to drink extra water and take in extra salt–which can be difficult, if your period comes with added nausea. I’m currently on birth control in an attempt to have fewer periods, because it basically kills me. And it is a painful death. Slow and painful.

Periods really, really suck.

[pots-gif]

for the anon 

[pots-gif]

Hey there, sorry to bother but I just had a question. I was recently diagnosed with POTS and I was wondering if you knew if it affects your period at all? It's been really fucked up lately and wanted to know if it was connected in any way😂

Hey! :) 

It affects my period a bit I think but I’m not completely sure. I feel more dizzy and nauseous when I’m on my period. Followers?

[pots-gif]

How does the nickname "spoonies" come from pots? I'm new to the pots community.

It doesn’t come from pots. 

Here’s an explanation. <3

[pots-gif]

ableist shit my family told me: 

- sorry but you’re not sick enough

- you can walk around outside, so you’re not disabled 

- if i googled my symptoms as much as you do i would think i’m ill too 

- of course you have some of the stuff you claim to have but everything can’t be true 

- can you just not talk about your health for a while? your life only revolves around your illnesses. that can’t be good for you

- just live for once! others do it too   

- why are you always trying to get everything diagnosed? you have such an unhealthy obsession 

- just deal it, it can’t be that hard 

- others have it worse 

(please feel free to contribute)

[bpd-bird-deactivated20180322]

“have you tried yoga?”

[dfilms-deactivated20161206]

[pots-gif]

Potsies dancing

[pots-gif]

I love your blog, I am having a really bad day and your blog made it a million times better.. thank you!!

Thank you so much <3 A lot of spoons to you!

[fogblogger]

what does diamox help with? I'm on florinef rn for pots but I still get headaches

Okok so there’s this woman named Dr. Diana Driscoll (I highly recommend looking her up, 100%) and one of her theories is that a lot of people with POTS also have/the POTS is caused largely by having too much spinal fluid surrounding the brain (I think there’s a name for it but I cannot for the life of me remember what it is). So you definitely wouldn’t think to put someone with POTS on a diuretic, but she tried it (she also has pots) and her theory was right for herself (so she opened a thing called pots care, the website is potscare.com and started trying to help people with it and it helped them A TO. Basically you pee out all your extra spinal fluid and your brain gets a break from it all. So I was put on the diamox two days ago, on a whim just to see if it did anything, and basically had immediate results. I usually wake up with horrible headaches (they call it angel wings i think, the headache feels like all your muscles are so intensely stiff all down your back and shoulders, like wings, and up into your head and even maybe your face and all that, so like everything hurts, I’m sure you know the feeling), and like i couldn’t sleep, i couldn’t even wear jackets because they felt so heavy on my neck and i felt like i was being weighed down all the time. that is COMPLETELY gone. I have NONE of that when I wake up. NOTHING. Like literally I don’t have that at all. It’s my third day on it (I’m on the pediatric dose because my body sucks and stuff and i only take it in the morning for right now) and I am almost completely not foggy (I haven’t been unfoggy for almost five years at this point), i have so much energy (i stayed up until 12 last night and i wasn’t counting down the seconds until i could go to bed, usually it’s like torture for me), i did a ton of stuff, i went all over the place, i drove and didnt feel like i couldn’t pay attention and my head didnt feel like it was pushing down on me the entire time i was upright, i haven’t had to lie down once today and it’s almost 3 o’clock, seriously. My ears aren’t ringing like they usually do, I can see better (I always felt like I had a cloud in front of me and couldn’t see anything right, idk) I feel like a new woman. I highly suggest trying it, if it doesn’t work you can just stop taking it, it’s completely simple and non committal. Seriously. Really. Like. I’ve never ever had anything like this before. I take florinef, too and it’s all good with that. Also have you tried midodrine? if not i suggest it a ton a ton, it changed my life. 

This morning I woke up and was fully functional before I even took my morning meds. It’s a big deal. 

[fogblogger]

please visit potscare.com

[pots-gif]

Hi! I have POTS and its a pretty bad kind thats really limiting. I am ligit in tears right now over finding this blog because I'm alone and no one around me knows what I'm going through. I'm so happy I came across this blog, I'm no longer alone.

You are never alone, we are here for you, @followers, please check out this wonderful person <3 Thank you so much for your nice message!