Is anyone here using supplemental oxygen 24/7?

My restrictive disease is getting worse and most likely I will be using supplemental oxygen at night while sleeping added on to my bi-level, if not 24/7. As someone in their 30's I find this incredibly different to accept mentally. I work full time right now but it's a struggle every day and I am definitely slowing down as is. I enjoy things less and less now as well. I know I just need to get over it and realize the O2 will keep me alive longer but easier said than done.

I'm used to kids staring at me already since I have a crooked spine and am really short, but adding on a nasal cannula and carrying a portable oxygen concentrator seems so depressing. I'm still single for a while now and I feel like it's going to be that much harder making friends and trying to find a companion. And seeing all these people I already know who are all going to ask what is the matter and am I okay. On the outside I look physically healthy, but inside my heart and lungs are under a lot of strain.

I don't mean to complain, it's just very hard because throughout childhood I had very limitations, and that is just changing so fast. I just feel like if I am doing so awful at 30 or so, the future is only going to get crappier.

It would be neat if there was a community out there where basically everyone wore supplemental oxygen, that wasn't a nursing home!

Sorry for the sort of off topic rant - just trying to get a bit off my chest.

raisedfist wrote: ↑

Wed Nov 20, 2019 7:42 pm

Sorry for the sort of off topic rant - just trying to get a bit off my chest.

We're not the best place for this, but I'm pretty sure we do have a few folks that are on continuous O2, and hopefully they'll pop in, and may have suggestions, they may even know some other forums.

My brother uses O2 at night, on his cpap, but not during the day, so I'm only partially up on the situation.

You've got my best wishes.

What you describe sounds very difficult. I think you're right to try to reach out to people who will understand -- this is a lot to handle on your own. You might ask your doctor whether he/she knows of any groups that might offer you some support, and you might also ask for a referral to a therapist. I hope either way you find someone to help you with this heavy load, and I wish you the very best.

I was thinking some more about your creativity in getting in touch with a board for apnea patients to see if we could help. I imagine you are way ahead of me on this, but you might also try chat sites for people who are short, or have spine disorders or COPD.

And although it doesn't sound as though you would describe yourself as disabled, in the same spirit of creative thinking, you might want to try googling "dating sites for disabled people" as you search for ways to find new friends and people whom you might date. There appear to be a lot of good sites that pop up in that search. I was especially struck by this site, which ranks dating sites and also has advice:

https://www.disableddatingexpert.com/

palerider wrote: ↑

Wed Nov 20, 2019 11:23 pm

raisedfist wrote: ↑

Wed Nov 20, 2019 7:42 pm

Sorry for the sort of off topic rant - just trying to get a bit off my chest.

We're not the best place for this, but I'm pretty sure we do have a few folks that are on continuous O2, and hopefully they'll pop in, and may have suggestions, they may even know some other forums.

My brother uses O2 at night, on his cpap, but not during the day, so I'm only partially up on the situation.

You've got my best wishes.

Thank you sir! I just did a right heart catherization procedure today and it turns out my heart is still going strong. My heart is pumping well and the right ventricle is working fine. They are going to give me a medication that will hopefully reduce my pulmonary artery pressures, as they are a bit elevated--but the same mild elevation as 3 years ago. I also scheduled an appointment with a specialist that manages people like me so I am hopeful that I will be in the right hands.

raisedfist wrote: ↑

Thu Nov 21, 2019 4:18 pm

palerider wrote: ↑

Wed Nov 20, 2019 11:23 pm

raisedfist wrote: ↑

Wed Nov 20, 2019 7:42 pm

Sorry for the sort of off topic rant - just trying to get a bit off my chest.

We're not the best place for this, but I'm pretty sure we do have a few folks that are on continuous O2, and hopefully they'll pop in, and may have suggestions, they may even know some other forums.

My brother uses O2 at night, on his cpap, but not during the day, so I'm only partially up on the situation.

You've got my best wishes.

Thank you sir! I just did a right heart catherization procedure today and it turns out my heart is still going strong. My heart is pumping well and the right ventricle is working fine. They are going to give me a medication that will hopefully reduce my pulmonary artery pressures, as they are a bit elevated--but the same mild elevation as 3 years ago. I also scheduled an appointment with a specialist that manages people like me so I am hopeful that I will be in the right hands.

I hope so!

Miss Emerita wrote: ↑

Thu Nov 21, 2019 4:08 pm

I was thinking some more about your creativity in getting in touch with a board for apnea patients to see if we could help. I imagine you are way ahead of me on this, but you might also try chat sites for people who are short, or have spine disorders or COPD.

And although it doesn't sound as though you would describe yourself as disabled, in the same spirit of creative thinking, you might want to try googling "dating sites for disabled people" as you search for ways to find new friends and people whom you might date. There appear to be a lot of good sites that pop up in that search. I was especially struck by this site, which ranks dating sites and also has advice:

https://www.disableddatingexpert.com/

Yeah it's hard I don't know anyone like me at all in real life. People with physical problems tend to live in the shadows, which I can't blame them since people in general can either be real nice or just plain jerks. I sometimes start my day with a kid just staring at me and asking their parents about me out loud, and while I am use to it and mostly don't care much at all anymore, some days I am already stressed out so the bit of extra stress tends to get me down.

I've tried therapy before but I've found that I am only really "depressed" due to my health problems. When I feel well, I am more or less happy.