At my wits' end with this condition

[TreeSapped]

Hi, I've been searching the web for some kind of POTS forum to chat with other people and this is the only place I could find, I hope it's okay for me to talk about things here.

 

I'm just at a loss with what to do. This condition stops me from being able to work even part time, I have no physical friends nor any prospects of a romantic relationship because how the heck am I supposed to get out and meet new people... Certainly in the town I live.

 

How do you actually stay positive for the future? I don't want to live a life as a lonely single man but I'm not getting any younger. And I don't want to live off benefits without any fulfilling job but I have no useable skills for work.

 

I don't understand it, what the f do you people do to keep going? I'm sure a therapist would help but again, no money.

 

I'm not sure why I'm ranting here, I guess I just need to vent and hope that someone somewhere with an idea of what I'm going through will understand.

 

I've been fighting against this thing for several years and now I'm in my mid twenties, with everything just as it was before, nothing's changed for the better, the future is just as bleak. " What have You found to help with feelings of depression? "

[sitcedar]

It is okay, I fel you hope you receover this one soon! 

[MTRJ75]

I’m not in a much different boat than you. Read stories about people who have recovered or found some measure of relief and keep convincing yourself of the impermanence of it all. I know harder to do when in a flare though, but try to keep it in mind as soon as one ends. You made it, you’re still here and there’s a decent chance it will eventually get better.

[MomtoGiuliana]

So sorry.  I know how hard it is to be disabled by POTS.  Most people improve with time and treatment.  Are you seeing a specialist and what treatments have you tried?

[TreeSapped]

I'll look up and see if there's any hope in other people's stories, thank you.

 

I had previously seen a POTS specialist years ago, and am currently trying to get a new appointment with them for further advice.

As for treatments:

- Midodrine, Fludrocortisone, Vitamin D and iron supplements, all with little effect

- Sugar-free diet with lots of water and salt, it's fairly well-rounded

- Regular exercise - walks every other day, small workouts most days of the week

[MomtoGiuliana]

It sounds like you are trying all of the typical treatments that can help.

Some people are really helped by IV fluids.

Good you are trying to exercise when you can.

Flare up I had two years ago I was found to be deficient in B12.  That may be another avenue to explore.

[Robert J]

This condition devastated my life. I was a teacher for 30 years when, in my last 5 years of teaching, I became sicker and sicker with doctors looking at me like I was a hypochondriac. I was sent for counseling, etc but I knew this wasn’t in my head. I finally found a doctor who recognized what I had and what I was going through. To manage symptoms and have some kind of life, self care takes about a third of my active hours including 4 days a week at an infusion center for hydration and multi vitamins. 
 

mentally, I had to adopt a new mindset and adjusted expectations. I went from an active life with many positive interactions each day to being isolated at home (I was socially distancing and on home restriction long before the pandemic - when things shut down I actually felt less lonely. 
 

So now I take life a day at a time. I treasure good days and I accommodate the bad ones. I was a planner but now I am more spontaneous. I must live life more mindfully and aware - a sort of Zen approach. The point is changing some assumptions and expectations of life can ease some of the mental stress. 
 

Finally, I learned a lesson about patience. You can improve and obtain more stability even though it is effort filled. Are there days I’ve just had enough? Sure. But that’s when I turn to forums and other supports to help me through it.

 

Life has a way of working things out if you don’t despair and give up. Possibilities for romance will find you when you least expect it. If you’re designated as disabled by your doctor, look into jobs for disabled through your County government. There are often jobs for people with disabilities which will accommodate your health condition.

i wish you all the best.

 

robert

[Sushi]

4 hours ago, Robert J said:

So now I take life a day at a time. I treasure good days and I accommodate the bad ones. I was a planner but now I am more spontaneous. I must live life more mindfully and aware - a sort of Zen approach. The point is changing some assumptions and expectations of life can ease some of the mental stress. 

Well said! Life is very different these days, but it is possible to adjust and find new ways of experiencing connectedness and satisfaction—and even of working. The Americans with Disabilities Act is our friend here. And, strangely, time helps, in that I don’t even remember what my life used to be. Until we have more research leading to more treatments, the only variable is US—and for me that has meant finding a new way to live within my limitations. Without the internet...we’ll I can’t even think how life would be.