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How Many On Forum Are Able To Work?


maggie
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I want to quick thank all who answered my first question in regards to how many older people with pots on this site. The replies I received were so supportive. I have noticed that some who post write about working. I am amazed that there are some who can work with this. I was dx in oct 05 and still don't have the stamina to work. How many on this forum can work?

Maggie

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I haven't been able to work full time since my 30's, still worked part time for a while, haven't been able to work at all for about 10 years or so. I'm now 52!

I made a big mistake and didn't file for disability in a timely matter. Yes, there is a stale date in order to file for it. I didn't know that. I put off filing because I kept thinking I was going to find out what was making me sick and that I was going to get better.

:angry: Believe it or not I still have that hope, that I will improve, once I get the proper treatment and they finish all the testing. I don't really look sick and I try to keep a smile on my face, so many don't realize how hard it is for me to do things and don't even realize that I'm not well.

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i worked 60 plus hours a week always feeling like i was ging to pass out . i would drive home crying in pain, exhausted, so thristy. was working 3 jobs at once. that all ended in 1999. :angry: i have slowly lost myself.

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I first got sick in September 08', and have been out of work since October 08'. I never ever expected to be out of work this long. I am hoping to go back this summer starting out with 4 hours a day, but even that's a stretch for me as I can only go for about 20 to 30 minutes of any activity before feeling faint or actually fainting. I too, am surprised and in awe when I see that others with POTS are able to work or drive, though it gives me hope. :angry:

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I have long-term disability insurance which kicked in after I left my job as a nurse May 18, 2007. Someone else here quoted the exact last day they worked. To me, it's like the day someone died and I'll probably never forget it. Every 3 months my LTD rep calls for "updates," asking if I still have the chest pain, brain fog, etc. and if there is any job I think I could do. Last time I said "Sure! As long as I don't have to drive, can lay down while working, don't have to talk, and don't have to process important information then yes, I could probably do something.... but wait a sec, I'd need a day off whenever I need it, and I probably couldn't work more than 3 hours at a time maybe 2 or 3 days a week..." She got the picture. Poor thing, my rep is actually really nice she's just required to make these inquiries every 3 months.

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Hi,

I have not been able to work since 2005. I am 27 years old and was a graduate student when my symptoms progressed to the point of disability. I had to take a medical leave from school two years ago because I can no longer function well enough to complete the clinical work portion of my degree. I was studying for a PharmD degree and completed all of the didactic coursework, but could never manage the physical clinic setting. While still in the program, I did well academically and loved school, so I stuck in out through the classroom component hoping that I would get better by the time clinicals began. I even took exams laying on the floor and had to have a friend tape most of the lectures for me my last year because I was too sick to leave my apartment. I don't know that I will ever be able to do any work, especially outside the home. It's difficult because I was really looking forward to completely a residency and working in healthcare - instead, I have become healthcare!

Take care and know that our survival with this condition everyday IS our work!

~ Broken_Shell :)

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Hi Maggie,

I had to stop work about a month before my diagnosis in July of 2007. Not even close to going back yet...Maybe a poll would be good for this topic?

Cheers,

Jana

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I am one of the lucky ones who is able to work. I found working full time was too much and wasn't doing me any good. I'm working 4 days a week now (and have been for some years). This seems OK as long as I don't work too much overtime.

I think there a two main reasons I can work and some others on the forum cannot. Stating the obvious, my symptoms aren't as bad as for some here. The second thing is that I've had dysautonomia for life and have naturally progressed into a job which was POTS friendly. I am well aware that even with good symptom control, there are lots of jobs that just wouldn't be possible. I have great sympathy for people in those professions who suddenly develop POTS.

At school, and long before I knew about dysautonomia, our careers adviser asked me what I wanted to do. My reply was, I'm not bothered as long as I can sit down all day and eat whenever I want. 20 years later, not a lot has changed really, except an occasional lie down is appreciated!

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Hi,

I am unable to work and am on medical leave from grad school. I will likely not be able to return to program I was in or function in the career that I studied for. I am still unsure where to go from here...

Here is a link to a similar past thread that I found helpful when I first started posting here. It has some of the "older" posters and some who no longer post. But, it is great to look at the topic again due to there has been many people join since this thread.

http://dinet.ipbhost.com/index.php?showtopic=9310&hl

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Like Cath_UK, I am one of the lucky ones who can work. I too have been symptomatic all my life and have "adjusted" my life and work accordingly. I am and have always been self-employed until recently, when I have taken a part-time, set my own hours job (very few of those out there!) When I had my major crash in Aug. of 2007, I could not work at all for 9 months. My ability to work waxes and wanes with my symptoms, but the more I work, the worse I get. If my work was not my passion, I would drastically cut back or stop altogether.

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I had to leave my high-tech managerial career and the place I loved for over 23 years in August of 2007. I am currently 46. I had an amazing and supportive work environment and over the years created as many coping strategies as possible including a couch in my office, a reclining computer chair with elevated foot rest, teleconferences to replace committee meetings as well as working from home some of the time. But when 'some of the time' became 'most of the time' and much of the time I was too sick to work even from home in bed ... I had to admit it wasn't going to work. It hadn't been working for some time. And things were not looking like they were getting better.

My decline since leaving nearly two years ago has been dramatic and continues to loose ground. I wonder if I wasn't living on pure adrenaline those last months in 2007 and once I left my career my body finally threw in the towel.

I realize that I can never go back to that high pace pressure schedule, but I do hope in time, with rest and perceverance to improve to a point where I can enjoy the little things again. You know, like being UPRIGHT!

LOL

~EM

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I am 44 and still working full time--although it is very difficult. I am uncertain for how much longer I can continue working at this pace--doing so takes everything that I have, and leaves me a wreck every night and weekend.

Nina

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I still work full time, though this year I'm on sabbatical, so it's been more relaxed. I've had stertcehs for up to a year when I couldn't work, at the time because of joint problems. Now that I'm on meds, I'm relatively functional. I still have bad days. I have a job with flexible hours and that allows flexible positions. I also didn't start having problems until after I'd finished grad school and been employed for four years. (I'm an academic, so my work involves teaching, which I do seated, writing/research (seated/reclining), and meetings (seated/reclining). Last summer I was a wreck and couldn't sit up. I just know I have to pace myself and not over do things.

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Not able to work. In fact, several years ago I had to give up most activities I was involved with. It was the only way I could manage to feel even a quarter human. If I had not had the wonderful husband that I have, I would not have been able to care for my children.

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I am 44 and was just diagnosed 3 weeks ago. I work full-time as a high school social studies teacher and have four kids (ages range from 3 to 12). My POTS isn't as bad as many of you, but I still experience total exhaustion. I just hope it doesn't get any worse!

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I lost my job that required I sit (which was perfect) and sell chocolate, and now I'm not sure I can find another one that was so easy. I'm having so much nausea lately though, that I'm not sure I'll be able to work. I don't plan on looking for a job until I feel better, and I just recently went back to graduate with my degree finally. I guess I need the definition of work refined-----I can work as long as the job requires me to do as much as I do at home, which is pretty much nothing. =x The job also needs to be okay with me taking unlimited sick days and be late all the time. I don't know if that job exists in this economy..

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I kept trying for months...but couldn't. If I worked a full day after 3 days I'd be unable to walk and landed in the hospital 4 times in 2 months. Then I tried part time but even tht was just too much. I loved my job and I sat all day...but I need to lay down frequently and for long stretchs...they frown on that in corporate america!! :)

Job now is trying to get better...

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I've been working since I was 14 with periods of time off for asthma in the past 6 years. This past year, things have gone downhill. I was diagnosed in Dec'08 after being off work for the first 5 months of '08. My asthma has also flaired like crazy this past year, and I worry about if there is a connection. This year, I've been off for almost 8 weeks of the year. I'm scared to death of what might happen if I can't work at some point. I'm 40 and single, with not a lot of family support. My sister is frankly terrified that I'll become dependent on her if I can't work in the future. We were raised in a family in which working is the defining factor in life. Pretty much, unless you are actively dying, you work. My mother worked full-time, went to college full-time, taking only two weeks off for radical double mastectomies, then went into full chemo, doing school and work. It is pretty hard to cope with this kind of an illness when the possible ultimate outcome is foreign to everything you were taught to value.

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I talked to my boss about my health problems. Since i was off work for a few months in 2007(because i had a very bad episode), he was really concerned and told me, that he didnt want to lose me as his secretary. Many things have changed since then. Now he gets up and gets himself some coffee, instead of me bringing it to him. Whenever standing or walking is necessary i can ask some of our students to do it for me. It also helps me very much, that my sister works at the same company as i do. She is always there for me in case i have a bad day and can't get up without having symptoms. I avoid asking her for help because i am stubborn and want to do it on my own, but it's really a big help to know, that somebody is there to help if necessary.

To get through my workday, i try to sit all the time. When i do have to get up, i make sure that i take all the necessary things with me, so i dont have to get up again for a while. I make sure that i do get up and walk around for a few seconds every hour to help my bloodcirculation. I eat at my desk and i have got fans positioned around me in case it gets to hot or somebody is smoking around me. I also made sure that my office light is not as bright anymore! They turned one big light off, so now it's darker in my office. I have my telephone, printer and copy machine all around me, i also have my drinks and snacks next to me.

I have a fan and a water sprayer under my desk. When it gets to hot i just spray my compression stockings with water and let the fan cool my legs down at the same time. I have also a little fan right in front of me.

These are some of my little tricks on how to get through a workday.

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I want to quick thank all who answered my first question in regards to how many older people with pots on this site. The replies I received were so supportive. I have noticed that some who post write about working. I am amazed that there are some who can work with this. I was dx in oct 05 and still don't have the stamina to work. How many on this forum can work?

Maggie

i am not able to work anymore... im a 22 male too. Im trying to file for SSI and disability but i have to wait for the official pots diagnosis. Its taking forever bleh.

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When I first got sick (Dec. ?06) I was out of work for about 4 mos. and thankfully was able to work from home. Following that I came back doing a 4-hour per day schedule and slowly (over the course of months) worked my way back up to a full day (plus 2.5 hour round trip commute) schedule. Most days I?m at my desk and able to get thru the day just fine. Other times, if I?m running around to meetings or just overdoing it, it?s difficult. I?ve not had to leave my office early due to a POTS episode since Feb. ?08. I definitely feel like I?m getting better ? not 100% yet but keeping my fingers crossed.

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