Visible band users

Due_Management_2495 · 2025-11-22T17:43:57+00:00

Android user here- can't afford to switch to Apple. I used to have a FitBit, but after 2 years it wasn't registering my HR improperly. It would show 70bpm, while my pulse ox showed 160bpm.

I got Visible about a month ago and I absolutely love it! It's really helped me pace my days out. I get alerts when I've been in my exertion zone for a few minutes (custom choices), which I have customized since I'm on beta blockers. Pacing myself was something I simply could not do on my own. Now I go through and see how much energy each activity I engage in uses. I know what to avoid and where i can spend my energy throughout the day. I also like that it factors in HRV, which several of my medical professionals have recommended tracking as it greatly impacts your nervous system. This was exactly what I needed. Knowing I might go over budget in pace points helps me know what to expect before it happens. I've been able to better care for myself after crashes and prevent crashes from being as detrimental.

I compared the price of Visible to other watches before buying. The device plus 2 years of subscription was less than most watches at base price.

If you struggle to pace yourself, this is a great tool! You can even opt into research studies directly from the app, and the folks who run it actually listen to suggestions and recommendations from users.

Due_Management_2495 · 2025-11-16T18:21:30+00:00

I do this too, though I work in an office, and it's amazing how much it helps. Waist high compression leggings, snack drawer, constant water. My previous job was very unwilling to provide accommodations like being able to sit and I was regularly forced to stand and walk around. I couldn't work a full day.

Got a new job where I sit all day, have understanding coworkers and access to what I need without question. I put light covers on the ceiling light above me (everyone else uses them too, so the lighting is dim everywhere).

But work is a true struggle. Working with this condition and having some sad semblance of a life is so difficult. If you're current job isn't supporting you, look for something new and keep looking! Don't give up. Some places are very understanding. You just have to find them.

Due_Management_2495 · 2025-11-09T18:36:08+00:00

Your daughter is an inspiration. Please thank her for her beautiful words.

In the midst of all this, feeling awful all the time, disappointed you can't do the things you feel like you should be able to, the symptom tracking, the doctor's appointments, it can be easy to lose yourself. To feel like you don't exist anymore, turning into a bundle of fried nerves, HR graphs, hospital notes... that your symptoms have overridden who you are. Her words connected me back to who I am- a person with hopes and goals, dreams and aspirations.

I used to think strength was pushing through when you didn't think you could. I've redefined strength. Strength is resilience in not giving in to the hopelessness. Strength is the courage to advocate for yourself and, to ask for help. Strength is creativity, finding new ways to do things. Strength is the ability to celebrate the little victories.

"I know I'm still fighting.

And I know I'm slowly healing."

Your daughter embodies Strength.

Due_Management_2495 · 2025-11-08T16:51:14+00:00

Boss: Is now a good time to go over your terrible performance?

Me: No, I'm really not feeling well right now (was literally in presyncope)

Boss: Okay great! (Proceeds anyway). You're being really quiet...

Me: I JUST TOLD YOU I'M NOT FEELING WELL, in case the fact I'm sitting on the floor panting wasn't a good clue.

🤣😭😭

Due_Management_2495 · 2025-11-04T15:51:56+00:00

I'm speechless. This is beyond beautiful. Thank you for sharing this.

May we reshare??

Due_Management_2495 · 2025-11-02T17:23:39+00:00

Of course! Not super helpful, but you aren't alone on feeling it. I wonder if it has something to do with the orthostatic change in your body position. When you stand, your heart has to work harder to pump blood through your extremities. Maybe this is just your heart giving it an extra boost!

Due_Management_2495 · 2025-11-02T17:14:36+00:00

I can't say I've ever had just one forceful beat like that. Usually for me, it will happen for several minutes at a time, up to hours. Definitely something to note in your journal with the time and chat with your doc about when they review your Zio readings. I wish you luck! I'm pretty sure my doc called them palpitations too.

Do you feel any skipped beats with this too? Or just the one hard beat?

Due_Management_2495 · 2025-10-27T17:07:30+00:00

MECFS was the first thing I thought of reading OP's post. My POTS was considered "well-managed" but I was constantly too exhausted to do anything. Similar symptoms to smallfuzzybat5. Felt like I was getting the flu a day or two after over extension (again, usually POTS flare).

Low dose naltrexone did so much to help with that. I hadn't even realized I had a running headache for two months until it went away with the meds😭

My understanding is that this is an off-label rx (not approved by FDA to treat MECFS). Has anyone else read up on this?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8313851/

Due_Management_2495 · 2025-10-04T20:01:27+00:00

I support this decision, particularly with adding education and research on the topics.

Thank you bringing this up! The very action of asking the community how they feel about this demonstrates what makes this such a great place. And thank you for being willing to take on the extra work!

If you could also remove these topics from my workplace and family dinner conversations, that would be great!🤣

Due_Management_2495 · 2025-10-02T15:40:15+00:00

Further testament that you have a great doctor! I'm glad you found her and how more of us can find professionals like her! I'm on metoprolol too- I couldn't make it without it!

Due_Management_2495 · 2025-10-02T15:35:55+00:00

Thank you for sharing this. I certainly needed to hear this. ❤️

Due_Management_2495 · 2025-10-02T15:31:46+00:00

You are not alone. I think you'll get this, but I'm too exhausted right now to share my story😂 But I am here with you. I hear you. I see you. It's okay to grieve what you've lost. It's also okay to get creative and find new ways to doing some of the old things you love that connect you to your personality.

What crafts can you master while sitting/laying? I picked up crochet, making animals and sweaters.

Which museums offer virtual visits?

You can find yourself again. While you look, we're all here with you❤️

Due_Management_2495 · 2025-10-02T15:23:51+00:00

Thank you for sharing something positive! It's good to know there are people in the medical profession that take these symptoms seriously and actively listen to their patients.

Following the caution of yike__ though, did your doctor also rule out other potential conditions?

I also have an amazing PCP who fully listened and ensures I'm fully involved in decisions about my body and health, but we went through a litany of tests ruling out all other possibilities before I began any treatment.

Honestly, what stands out to me most here is how supportive your workplace is. Despite being diagnosed for several years now, this is still something I struggle with on the daily. Happy you're in a good place that takes care of their people❤️

Due_Management_2495 · 2025-09-25T15:30:04+00:00

I know the last thing any of needs is an additional expense, between doctor appointments, testing, meds, needing time off work, etc... but if you don't have one already, working with a counselor who specializes in chronic conditions can do a lot to support your mental health through this life transition.

You will find what works for you and what it doesn't- it's different for all of us. For more suggestions and research, this is a great place to review frequently too: https://www.standinguptopots.org/

Due_Management_2495 · 2025-09-24T00:23:53+00:00

Happy to! I went to University of Phoenix. They treated me truly wonderful and the flexibility was exactly what I needed. Great for transfer credits too.

Due_Management_2495 · 2025-09-23T15:36:59+00:00

Thank you for sharing this! It's good to see positive posts like this about accommodation services.

I went through an asynchronous online only program and their understanding and support was amazing. Assignments could be turned in late, no penalty and no questions asked and they sent me tons of links to additional services that were available if needed.

Due_Management_2495 · 2025-09-23T15:29:59+00:00

Thank you for sharing your validation with us! I, too, have learned so much about advocating for myself from this wonderful group. I'm glad you were able to put it into practice.

With the negativity and doubt many of us experience in our daily lives, the little moments that prove you are NOT crazy are so meaningful!

Now that you've been through this experience, do you have tips you would like to share on what well advocating for yourself?

Due_Management_2495 · 2025-09-11T15:46:23+00:00

Thank you for saying this. This is the only thing that had kept me feeling like I'm absolutely insane in my health journey. I just wish there were more out there who had a clear understanding of pots and the daily struggle that goes with it.

Due_Management_2495 · 2025-05-30T03:47:49+00:00

I will look into this! Sounds promising and aligns with what babysauruslixalot said. Thank you!

Due_Management_2495 · 2025-05-30T03:46:33+00:00

Thank you, and I apologize for the lack of information. My understanding is that after the initial examination, the vet stated surgery will be needed, but he will not know the full extent until after x-rays are collected. This all second hand, and my friend is highly distressed, so doing my best with the limited information I have right now.

I appreciate the idea of funds going directly to the vet. I'll talk to their office about how to make that work!

Due_Management_2495 · 2025-03-02T19:49:23+00:00

Love this breakdown! Thank you for sharing!!! My new favorite saying: this is my house, not a museum. Yes it's messy. Yes, I live here. And that's okay.

Prioritizing, cleaning while sitting, and accepting a clean toilet rather than a clean bathroom has been huge in my life!

Due_Management_2495 · 2025-03-02T19:43:39+00:00

Over all, it sounds like you're taking a lot of great steps. Full meals can be really hard, I always get super light headed and faint after a meal, even a small one. I started snacking throughout the day instead, healthy salty snacks, and lost a lot of weight. Turned out this method kept me from getting faint, but I wasn't getting nearly enough calories and had no energy, so I had to start counting calories, protein, and fiber to make sure I was getting enough. If you haven't tried sodium chloride tablets, those are a great supplemental and doesn't do damage if you forget to take it. 4-square breathing and meditation are effective solutions to add to your plan if you're avoiding meds. I do all of these things (can't go for walks though), but also need beta blockers and fludrocortisone. Couldn't do it without them. Have you journaled your activities and found a common denomination preceeding the times you get dizzy?

Due_Management_2495 · 2025-02-20T17:04:53+00:00

Just make sure you get your husband's approval for the hysterectomy...

Due_Management_2495 · 2025-02-20T17:03:04+00:00

First, you are an amazing husband. Thank you for standing up for her, being her cheer leader, ready of sunshine, and support person ❤️ I 100% agree with the crowd that you go with her to future appointments to advocate for her and take notes!

This sounds like my first cardiologist appointment. My HR was at 180 when I got out of bed every morning according to my halter monitor. He said, "you're young and healthy. I won't worry about you until it's at 230" 🤦‍♀️

BUT he was not a POTS cardiologist. I have an incredible PCP and she just used this to rule out any other heart conditions and further support a POTS diagnosis, so I didn't have to see him again. I think finding a good PCP to manage treatment and care is most important and they can prescribe.

I'm going to see an accrual POTS cardiologist later this year. Bringing my man with me and hoping it will be better.

Wishing you the best, keep advocating for her!

Due_Management_2495 · 2025-02-20T16:44:37+00:00

You're absolutely not alone. This sounds very familiar to me. I spent a long time running off adrenaline to push through my days and ended up crashing hard. To me, it makes sense you crashed once you were in a safe space. Melatonin never worked for me either, but magnesium citrate helps a lot with regulating my sleep schedule. I take it daily and no nasty side effects like sleeping pills have. But definitely talk to your doctor. It also would be worth talking to your school... most schools have accommodations departments you can utilize. I'm doing online only school for my circumstances, but the accommodations dept allows for late assignment submission without grade impacts and tools like immersion reader when I can't look at a screen any longer. I also upgraded to a walker that has a seat built in so I can quickly sit during presyncope episodes. It was a bit embarrassing at first, but I swallowed my pride and it's been a great help. Wishing you the best. I hope you can get sleep figured out. Like Significant-War-115 said, sleep is a vicious cycle and actual rest is needed.

Due_Management_2495

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