Let’s Make My Girlfriend Into, A Beam Of Light. She Has Been A Shiny Ray Of Hope For Me Through These

POTS Life Hacks For Diffucult Mornings

We all know how important it is to stay hydrated, especially when chronically ill.

If you're anything like me, you wake up feeling awful. Keep a giant glass of water right next to where you sleep. Before getting out of bed, drink water for about 1 to 2 minutes. Bonus points if you use electrolyte drops.

Breakfast- a breakfast I love is oatmeal and salted butter toast. It gives me protien and some salt to start off my day

Having an extremely difficult morning? Don't be afraid to ask for help if it is available to you! There are days where my girlfriend makes me breakfast. You are NOT weak for asking for help. In fact, I think you're pretty brave.

If my doctors aren’t gonna take me seriously I’m going to make them

I went to a cardiologist, and he didn’t take me seriously at all. I got an off vibe from him. I asked the nurses, the receptionist, and my primary care doctor for a tilt table test. My cardiologist said no to getting me a TTT, all because I got better with water and salt intake (almost as if I have POTS???)

After bawling my eyes out m called a different cardiologist and hopefully they’ll actually listen to me. I just want a diagnosis so I can move on. I feel crazy.

My plan is to purposely decrease my salt and water intake so they take me seriously when I finally get a tilt table test. I’m ready to take drastic measures to be taken seriously

good luck with a second cardiologist appointment. I have only done the nasa lean test but got a diagnosis of pots through it. the instructions tell you to avoid excess salt and water 12-24 hours beforehand.

don't do this but i will also avoid taking painkillers before going to a doctor so that i will be crabby and exhausted and sore because i look fine when i'm coping

Its weird I made the same post about purposely making my symptoms worse on Reddit and it got taken down. You're not really supposed to talk about that. Its understandable but idk how else to get my doctors to take me seriously. And thank you! I hope it goes well too apparently they're a really good doctor

Thanks so much for your feedback! And that sounds really calming :) I encourage you to do it more often. In my settings, I'm able to put my phone on "Down Time" which allows access to only a few apps. I'm not sure what phone you have (I have Apple), but you could try that!

Digital Detox Helpung With Chronic Illness

I did what I like to call a "digital detox" by limiting 90% of the apps I could use on my phone, especially social media. I do this because I find so much negativity in the community. Trust me when I say I know being chronically is hard. But there is no reason any of us need a 24/7 reminder of it.

I also find it difficult when I'm stuck at home for a good majority of my days, with no work, it's hard to keep myseld entertained all day. I end up relying on my phone and I get incredibly sad in the process.

As some of you may know if you watch my YouTube, I was off social media for 7 months. I found it beneficial. While I'm ready to be back on social media, I needed a break

So I only used my phone to film my journey, listened, to music, and text two people. My time spent on my phone was half of what it usually was (really just using the camera app.)

Would you be interested in me uploading to my YouTube channel my journey of a digital detox while living with a chronic illness? Should I do this more often? Would you consider doing this?

Things my disability has made me more grateful for:

My support system. I have been around some, let's just say, very mean people in my life. I've curriated a chosen family I couldn't be happier with. With special thanks to my girlfriend and her family for giving me a temporary place to live and taking care of me

Self care. Before while I did take care of my body, I didn't take it as seriously as I should. When I had to use the restroom, shower, brush my teeth, drink water, eat I didn't always attend to my needs. Now a days, even though they are way harder to do, I put in extra effort. Because I deserve it

My art. I have a lot of self esteem issues with my art, and even have shut downs on occasions from a piece not being “perfect.” But at the end of the day, when it’s just me in bed, with my art book, and my markers, I can forget about being disabled. I can fully put effort into something I love and have worked so hard on. And my efforts pay off. I can tell my art is improving

No, I am not I am not glamorizing being chronically ill and disabled. This is the best way I’ve learned to accept and cope with it though

TW- my inspiration for the art piece is rather sad

A young angel, drowning. Their wings wet, and they can’t fly to safety, snd they can’t call for help. Losing your innocence so young is so difficult, but you’re not alone. You have many supporting you, including me

TO ALL FELLOW CHRONICALLY ILL AND DISABLED PEOPLE

What would you like to see in artwork to help represent you? People with mobility aids? People that look like you? Give many any of your thoughts and ideas in the comments, my inbox, or my DMS

gentle check in for my fellow POTSies. does your body feel:

heavy

weak

shakey

sweaty

or generally overwhelmed?

if yes, here's a little reminder to hydrate, get in some electrolytes, take ur meds if you forgot, and adjust your positioning if you can! sit down, lay down, stretch your legs, elevate your legs, etc. if you've been in one position too long, you may find a little bit of movement to help.

i know for me even sitting upright too long can exhaust me and i dont realize until im out of sitting up spoons. i just did that today now, after some wandering around the house, im having my Horizontal Time (bed). after this i'll likely take a 5 minute walk.

there's no shame in needing rest. there's no shame in needing a break from something to go stretch or get water/food. there's no shame in only being able to do very light exercise. it's okay to listen to your body and do whatever is best for you!

Digital Detox Helping With Chronic Illness

I did what I like to call a "digital detox" by limiting 90% of the apps I could use on my phone, especially social media. I do this because I find so much negativity in the community. Trust me when I say I know being chronically is hard. But there is no reason any of us need a 24/7 reminder of it.

I also find it difficult when I'm stuck at home for a good majority of my days, with no work, it's hard to keep myseld entertained all day. I end up relying on my phone and I get incredibly sad in the process.

As some of you may know if you watch my YouTube, I was off social media for 7 months. I found it beneficial. While I'm ready to be back on social media, I needed a break

So I only used my phone to film my journey, listened, to music, and text two people. My time spent on my phone was half of what it usually was (really just using the camera app.)

Would you be interested in me uploading to my YouTube channel my journey of a digital detox while living with a chronic illness? Should I do this more often? Would you consider doing this?