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Angela

How Many People Can Still Work?

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I don't have POTS but, do have an autoimmune dysautonomia. I am blessed to work in a place where my co-workers are understanding and helpful. They often recognize when I am in crisis before I even realize it myself and are quick to react. I have gone from very physical work to office work with some teaching and training. Most days, I sit in my little corner of the office working quietly on the computer with few physical demands placed upon me. Driving can be a challenge - mainly when I am having flares or right after plasma exchanges. I don't live far from the hospital so, I can be home in a matter of a few minutes and have only had to be driven home a couple of times when my blood pressure was extremely low. Exercise is not an option for me - all of my physicians tell me not to worry about it and do only what I feel like doing.

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I work 40+ hours each week. I have drove the whole time. Granted I've never passed out and if I'm feeling that bad I dont drive fast or far.

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I had a job I loved being an archaeologist for the Hualapai Tribe along the Colorado River/Grand Canyon but gradually started to get sicker, and found out I had dilated cardiomyopathy and congestive heart failure from the doctors at the Mayo Clinic in AZ. I moved down to Tucson to be with my fiance and worked for the county as an archaeologist, where it was mainly a desk job, clearing earth-moving jobs before the county would start work on a particular project. I made it there for a little over a year, and then had to quit completely after I was diagnosed with severe autonomic neuropathy/orthostatic hypotension/etc. I would start out okay on Monday, but by Wednesday had to leave early, and couldn't make it in on the last two days of the week. I really miss working and my job - I loved it!!

As for driving, I don't drive on my 'off' days, which makes it difficult to get to scheduled appointments if someone is not around to take me.

As for hair, I only wash mine once to twice a week!

Cheers!

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No I haven't been able to work since I was 21. POTS is the reason why I stopped working in the first place...At my retail job many years ago, I started to have panic attacks and nervous break downs in the middle of a shift....I'd just become highly emotional, start crying for no reason and was becoming unreliable. I would shake, have tremors and always felt the need to sit down on the ground in between customers. After every shift, I'd sit in the break room for up to 1-2 hours just waiting for my body to chill out. At this point I did not even know I had POTS, so I thought I was just dying! People made up some wild theories at work...I started using drugs or I was pregnant.

If I could find a desk job, I could probably do 10-20 hours a week as long as it didn't involve stooping down or prolonged standing. However those are soo tough to get these days. I never finished college either (due to POTS..../sigh), so I have no degree.

Nowadays I do drive, but I still don't really like doing it...I'm much more comfortable if someone else drives because that way I know if I start to feel really sick, I won't be stuck somewhere.

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I do work. I substitute teach which is nice because I can take days off if I am tired. Don't know if I am ready for a full time job yet (to be a teacher) but I do know work gets me on a schedule and keeps me moving.

I hope to work up to more hours. Bad part is when I work I am too tired to work out which isn't good either.

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I don't drive(since the doctors suggested that i don't-though not so much because of pots but because of the eeg abnormality which may be epilepsy-still no definite answer on this one).I work as a teacher but if i was on another field of work i m pretty sure i wouldn't be working.Even now there are days that i m so sick i can't go to school. On two occassions i collapsed in front of my colleagues and students(very traumatic experience).I;m lucky because the headmaster and everyone in the school have been really understanding.I try to give my 110% when i am well but there are days that i am in the class and i can barely talk(because of breathing problems and fatigue) so i have to invent clever ways not to show i am unwell.I think that if i wasn't working i would be better healthwise but i love what i do and i would be sad to abandon my classroom.(plus it would damage the family's finances since my salary is an important source of income)

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I have hyper pots and work full-time as a college professor. Thank goodness for technology, as I can teach 50% of my load online if I need to. Currently I am only in class for 2.5 hrs a day M-W, with Thursday and Friday "off". I still have to attend meetings and work on research projects, but most of that i can handle sitting down or even from home (except the meetings). My supervisors have been incredibly understanding so far, allowing me time off for treatments and appointments. Still, I am currently going through our university's process for being declared disabled and getting work accommodations under the ADA so that I am legally protected should administration, or their attitudes, change.

I highly recommend asking for ADA protection if you can get it. This prevents your employer from using absences and illness to fire you. I have to miss a week at a time to go to Mayo Clinic, and technically since I'm faculty I don't get sick days, so my supervisors could very well hold this against me if they were so inclined. With the ADA, I can specify time off for treatment and as long as they agree (and it's reasonable) they can't use this later to discipline me. I'm also being given a temperature-controlled classroom so that I can keep it much cooler than other rooms, and am allowed to defer my classtime to online work if I am especially symptomatic. This was way more than I asked for initially, and more than I hoped for. Once the ADA is invoked, institutions (especially public ones) are very concerned about providing accommodations. Assuming everything goes through, which I've been assured it will, I will even have the option of 100% online teaching if I should become bedridden.

I used to teach 8th grade. There's no way in **** I could still work if I did that. My heart goes out to those of you who do. The only reason I'm still working at all is for the health insurance. I would have quit two years ago if I didn't need the insurance. :)

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