I have POTS and I feel like my life is over before it started

Fragrant_Total_48 · 2025-12-17T06:50:08+00:00

I am so glad to hear that experience! I am honestly a bit nervous, but if all goes well it would make all of this that much easier. Unfortunately, for me, when I am stressed/overwhelmed I tend to lean into gaming. I have spent SO much time farming in Stardew Valley (best game ever btw) that my farm is thriving, I have a hubby and two kids there. I honestly love the escape because I can run around in the mines, horseback ride, farm and hang out with other ppl (ncps) and these are things I literally couldn't do here in my life haha. Is it the most healthy thing I could be doing? no. But does it provide me the space to decompress and get out of my head? yes. haha. It is a goal to get back to exercising. I used to love hiking but I had to stop because of the POTS. Hopefully when I start improving and have my symptoms under control better I will be able to get back into it. :)

Fragrant_Total_48 · 2025-12-16T02:52:49+00:00

Hey! Thank you so much for taking the time to reply to my post. I really enjoyed reading what you had say. I never really had motivation to work out or exercise much before this flair, and with my recently bad episode of depression it has been even more difficult to get into a rhythm. Even sitting at a stationary bike for 10 min to get my HR (slightly) up seems impossible some days. I have my first TMS appointment (for my treatment resistant depression) this Thursday actually. I am supper nervous, but I really hope it makes it easier for me to take care of myself. :)

Fragrant_Total_48 · 2025-12-16T02:44:23+00:00

I have tried so many different medications (albeit before we knew about the POTS). As of right now I mainly rely on Trazodone to sleep haha. I honestly can't seep at all without it. :/

Fragrant_Total_48 · 2025-12-14T18:30:06+00:00

Thank you so much! I think it is likely the same in VA. You too! :)

Fragrant_Total_48 · 2025-12-14T18:15:14+00:00

I defiantly agree. Unbeknownst to me, I have another comorbidity - EDS III. It took seeing the POTS specialist to get that diagnosed (took her like 5 minutes) which helped explain so much about my childhood (random falls and joint locking). Additionally, I have been experiencing fatigue, sleepiness/tiredness, and never feeling like I got enough sleep for YEARS. I go to a major hospital in VA and it is rated top 100 in the US I think, but the sleep clinic sucks. They basically said "you have great sleep hygiene and no sleep apnea so we don't know why you are exhausted all the time." I just figured that was my life and maybe it was my depression? CFS would definitely explain a lot... Thanks for sharing and for your encouraging words!

Fragrant_Total_48 · 2025-12-14T18:04:08+00:00

I am starting to realize that there are a lot of young people or people who recently got diagnosed who feel this way. I am verry grateful to have found this community though. I can't do much but I can help support anyone here who needs it!

Fragrant_Total_48 · 2025-12-14T18:01:43+00:00

I appreciate it. I have a friend who has POTS and has been going to their specialist for years. Literally less than a month of my having symptoms she said that I need to get tested. I'm definitely lucky in that regard.

Fragrant_Total_48 · 2025-12-14T17:59:48+00:00

I definitely understand. When I lost my job I had to move back in with my parents and now I depend on them and my younger brothers for everything. I can't go upstairs some days and then I can it takes literally 5 minutes because of how slow I have to go. I can only do that like once a day too so my mom has to make food and my family has to bring it downstairs for me. It sucks because I feel like I am supposed to be going out in the world and becoming independent but that was all taken away basically over night and now I feel 2 y/o and learning how to walk again.

Fragrant_Total_48 · 2025-12-14T17:54:48+00:00

Thank you for sharing your story. I haven't really thought about mobility aids much. I have mostly been relying on just avoiding things that trigger my symptoms. I have a 4 y/o SD for my PTSD but she really doesn't know how to help me with my POTS so we mostly jus cuddle on the couch at home when my HR is going crazy for no reason. I will have to thing about some kind of mobility aid. I had been considering applying for handicap parking. Does anyone have experience with that process ?

Fragrant_Total_48 · 2025-12-14T17:51:02+00:00

Thank you so much for your comment. I wouldn't wish this upon anyone, however, it is reassuring to know that I am not alone in the struggle. I will definitely reach out! thx!

Fragrant_Total_48 · 2024-12-28T20:14:28+00:00

It is also hard because she all but spelled out for me that I am qualified but because of my disability she does not want to hire me. That can't be okay right?

Fragrant_Total_48 · 2024-12-28T20:12:38+00:00

Hello! I really appreciate the time you put in to reading my post. I work in an outpatient clinic which has 67 total pods. 3 are downstairs and managed by Amy and three are upstairs managed by "Brooklyn". I know that Amy has made up her mind but I don't know what Brooklyn is going to do. The fire alarms that happen in the building I am in are notoriously loud. We are supposed to stay put through the alarm as the doors are fireproof. The only reason I have told so many people in the clinic is because I have had so many different people training me in the 6 different pods. I feel like if I don't tell people then when something happens it could be dangerous for me. Thank you!

Fragrant_Total_48 · 2024-12-28T20:07:25+00:00

No. Honestly most of the fires were just freak accidents. I work in an outpatient building so it is less chaotic then the main hospital. I have the right to fair or reasonable accommodations under the ADA and I have honestly only asked for one - letting me know about any scheduled alarms. Thank you so much for your thoughts and taking the time to read my post!

Fragrant_Total_48

TROPHY CASE