If I Want To Be Able To Work?

[lieze]

Do I need to just retrain my body to be able to stand and be active for 8 hours?

If some of you are working how do you pull it off?

Have any of you taken time off or backed down on hours and then been able to return to work?

I'd be happy to just work 1-2 days per week right now.

[MomtoGiuliana]

I don't know about re-training your body. It's true that too much lying down can make orthostatic problems worse and exercise definitely helps many POTS patients. But some people no matter how hard they try are not going to be well enough to work, and in fact pushing too hard can make you even worse. There may be treatments you have not tried that might help. Time may help.

I worked part-time for 3 yrs and then went back full-time in 2007.

[Tammy]

I so want to be able to work. I miss it so much when I'm 'feeling up' to missing work. Mostly I know that every time I try to push my body to be on my feet too long, it just seems to make things worse. Hopefully you can find medications that will allow you to get back to work. I have tried so many and they seem to make me worse. Frustrated and totally understand how you feel

[firewatcher]

"Tilt training" has shown some promise to stop or reduce the number of faints, but I haven't found anything that would allow me to have the energy to work full time. Maybe if I was seated all day. Honestly, you are already working full time just raising the kids. They are my biggest drain: unexpected emergencies, house-stuff, just keeping up with them. As you get a better hold on your symptoms, you abilities (at least with physically coping) will improve and you may get back to work.

[marni4u]

I've been working full-time and continue to do so although, not by choice. I have no other way to support myself so it's either work or be homeless. I do have difficult days but somehow I manage to get through them.

[Kujiforo]

I can't work at all. I had to quit my job last year when this started and haven't been able to work sense, much less even stay sitting or standing for a good amount of time to work. Or stay conscious sometimes. Nobody would really tolerate me having to lay down whenever I need to, on the job. So, until the problem corrects, I won't be working. Its rather frustrating. Especially when family yells at you to get a job.

[TXPOTS]

"Tilt training" has shown some promise to stop or reduce the number of faints, but I haven't found anything that would allow me to have the energy to work full time. Maybe if I was seated all day. Honestly, you are already working full time just raising the kids. They are my biggest drain: unexpected emergencies, house-stuff, just keeping up with them. As you get a better hold on your symptoms, you abilities (at least with physically coping) will improve and you may get back to work.

I'm curious. What is tilt training?

[poppetkazutaka]

At first I was a supporter of working but lately I just don't know if I can do it anymore. Of course, that might be because I'm slowly poisoning myself to death with all the cast off from my autoimmunity that the doctor doesn't want to treat and the kidney issues but...who knows considering she won't help?

If I could stay at home I could get my other books written, and get the one I have written published. Then that could be my work! I wouldn't need to be on my feet for writing. :3

[iheartcats]

I'm looking for work - it's a hard market right now. And add that to having a 'disability' and it is so stressful. I will continue trying to get a position, do my best, and hope I can work full-time without issues for the first year.

FMLA kicks in after one year in the USA so, even if you don't need it, it is there to protect you. Mentally I know the first year will be hard as that protection isn't there (even though one hopes one doesn't need it) if that makes sense.

I've always had a 'desk job' so that's what I'm seeking. I'm fortunate in that my career wasn't a standing/running around one like young childhood education or nursing. But...some people still manage those jobs on here. It's the you won't know until you try thing, I guess.

[scarfgirl]

I tried to retrain my body. It didn't work. If that were possible; I wouldn't have 'let myself' get sick in the first place.

I quit my last job because after standing for a few minutes, all my customers started sounding like Charlie Brown's teacher.

If I can beat this last round of brain fog back, I'm gonna work through government programs set up to help people on disability find work.

[janiedelite]

I really want to work, but haven't worked for 3 years now. Last August, I decided that I wanted to see how much I could really do even if I felt poorly while trying. I decided the easiest route would be to start volunteering so I started helping out at the middle school where my husband teaches. Most of the time, I'd be correcting papers, filing, or typing, so I could sit down. I would also help occasionally in the classroom or make copies, so I brought my seat cane while doing this. His office was close by and I'd usually go lie down every couple of hours on the floor. I usually only volunteered for 3 or 4 hours at a time, 1 or 2 afternoons a week.

When you go to work, you have to shower and fix your hair, get dressed, drive or ride a bus, and then still function for another 8 or 9 hours. I realized that I was a good volunteer because I worked hard while I was there. But I had to miss a lot of days because I was too ill, and most employers wouldn't tolerate that for long. I didn't gain any more stamina by pushing myself. But it felt good to help others.

I do think that if you want to work, starting by volunteering at a local school or charity is a good way to begin. If you're ill, they won't hold it against you. You can do as much or as little as you can. And if you're applying for SSDI, you should keep a record of the days you volunteer, how you felt while working and after you're done, and if you had to skip helping because you were ill. I did this and it showed the SSDI judge that I wanted to work, but that I just wouldn't be a predictable employee.

[firewatcher]

"Tilt training" has shown some promise to stop or reduce the number of faints, but I haven't found anything that would allow me to have the energy to work full time. Maybe if I was seated all day. Honestly, you are already working full time just raising the kids. They are my biggest drain: unexpected emergencies, house-stuff, just keeping up with them. As you get a better hold on your symptoms, you abilities (at least with physically coping) will improve and you may get back to work.

I'm curious. What is tilt training?

Tilt training is a progressive adjustment training to upright position. Basically, you stand, barely leaning against a wall until you feel presyncopal or your symptoms tell you to stop then you sit/lay down. Each time, you try for longer periods of time. Eventually the body will adjust (for certain people) and compensate better for the upright position and you won't faint when upright. There have been several studies showing its effectiveness for NCS and OI. I think you have to do it several times a day for many weeks.

For me, I think I would start shaking so badly that the wall would come down, but I don't have hypotension. I also feel better if I keep moving around, my HR is actually lower than if I were standing still.

[lieze]

Really good input here thank you everyone.

I'm still in that stage of trying to figure out what I can do-what my limit is.

[lieze]

I feel better moving around too firewatcher.

I never have enjoyed standing in one spot for very long.

I think doing dishes is one of my most challenging tasks for that reason.

[ramakentesh]

I work but its been harder sense my current relapse - sitting all day makes me very dizzy and some days are very tough. Other days are fine.

[toddm1960]

I still work fulltime also, 8 hours sitting the whole time if I choose. I've been able to keep pace, but over the past 4 years my proformace is lower and lower. I'm now at the point where I'm in bed 60 minutes before I get to work, and I'm back in bed 60 minutes after work. My energy envelope is smaller each passing month, I'm at the point now where I have no life outside of work. There is a tipping point where working is reducing the qualitity and quanitity of life.