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Kelly
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Hey everyone, im getting really worried, ive been off work and college for 6 months now, as i have been so ill and unable to walk from one end of my house let alone go out to college. so i left college and decided togo back in september and re do the whole year. however, it seems as though im never going to get better, my G.P. thinks that i'll be feeling poorly all sumer as it is so hot and the heat makes my pots really bad. and if i feel the way i feel now i will never be able to go back to college i desperately wish that i could go back to the way i used to be . . . . i know i cant but i can wish!! i really want to get a job and earn some money so my parents dont have to pay for everything for me but im too ill at the moment.

how does POTs affect your work lives do you have to work part time because of the illness or do you not work? i just want some advice!!

Hope you are all ok

kellz

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I was of work for 6 month last years due to a very bad POTS episode myself. At the worsed time, i couldnt even get up and if I did so, i had very bad spells.

I experienced the same bad Episode 4 and 8 years ago. But i must say, that the Episodes settled down after a while. I always took the evening hours to walk as long as my body would tolerate it and even when i was at my worst, i persistet on a dayly trip around the village in the car.to keep some routine and get out of the house. My mother picked me up then and even just walking to the car was realy difficult. But like I experienced before, my body got a little adjusted again. Iam back at work for 29 hours a week. (because i have a child as well)I make sure that i just get up if i have to. I have found so many little tricks to make it trough the day! I was diagnosed with POTS about 10 month ago and know now whats been going on with me in the past 10 years. When i had a very bad Episode 4 years ago, nobody even knew that i had POTS. Then i returned to work after 4 month not even knowing what was exactly wrong with me. Back then, i tried to function like a healthy person, but felt bad all the time. Now since i know so many of my Triggers, i can manage. Dont get me wrong, iam still not doing great healthwise. I still have to do all the housework sitting down in a chair and be very carefull about so many things, but you probably know yourself how it feels looking at something in front of you and not knowing how you are going to get there because you cant get up. With that experience branded in my memorie, i often feel like tarzan now. I hope that it slowly gets better and better and I do hope, that if I get another real bad Episode like that, that all them things I learned from this site and my doctors will help me to cope with it easier then the last few times.

I wish you all the best, and I do believe that in time you will become your own health specialist and that your body finds a way to regenerate.

Carinara

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I could only work 3 hours per day at first. I could only be upright for that long. Then after a month, my boss requested that I slowly build up to more I really didn't feel like I could and it was a BIG constant struggle. Very slowly I returned to a normal schedule. What I do agree with is that I believe that building up slowly has helped me recover. I think forcing myself has helped my system to do more. I mentally had to do that- I was going crazy laying in bed. What I don't agree with is that Pots patients for the most part can be expected to function in a job for 8+ hours a day, 5 days a week. I work 40+ hours a week now and I feel that although I can do it, it is not healthy for me and I have constant setbacks because of it. At least in my experience, a healthy schedule (if you can do it) would be 20-30 hours per week and that includes school work. There are some places where that type of schedule yields health insurance and that is ideal. I feel my limit at 5-6 hours per day- then I start to get fuzzy and want to online shop for clothes.

So, to quit rambling- my experience has been that it is important to push against your boundaries, but not to the point of setbacks. You may find that you can work longer hours at a seated job than you could at a standing, moving job.

As for school- online classes are fabulous! I would not count school out all together. There are lots of options. I completed my MBA online while having Pots. It is all about timing and what is right for you. I can't say these things are in anyone's control- but there might be some solutions that will work for you.

Kits

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I agree with Kits. Completing your degree online is really a viable and respected option now!

My bachelor's degree was earned the traditional way, and with my Fibromyalgia (and possibly POTS), it took me 7 years to complete it.

I earned my master's degree online, and it only took me 2 years to complete. I haven't had a single employer ask me whether my classes were online or traditional. The key is to find a good, reputable institution that offers both options rather than an "online school."

As for work, I am currently not working because of discrimination at my prior workplace that started once I became sick and needed to lie down to work. However, I am looking for a new job now, still operating under the theory that I can work while reclined. I have had several interviews (2 are promising with 1 preparing an offer!), and my experience has been when I am upfront about my condition, they have shown admiration for my "positive attitude" and are very willing to help me work. As long as I can do the job, they don't seem to mind if I do my work reclining, sitting, or standing on my head! :ph34r:

If you find that you can lie in bed and work on the computer all day and feel basically okay, working from a reclined position may be an option for you to consider. :blink:

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I had a horrible slow decline of health and spirits at my last job. When I was diagnosed I had a job that required me to stand for 9+ hours a day. I would go to work for a couple of days and then have to be taken to the ER. In my stubborn determination to keep a job I loved I made myself so sick I could not function, period. My husband begged me to quit, but our health insurance was through my job. I was finally forced to admit that despite my best efforts I could NOT suck it up and make it work.

I now have a full time desk job, and while it sometimes exhausts me, I feel more like a "normal" person working full time. I agree that 20-30 hours would probably be ideal, but I have to work full time to keep the benefits that allow me to see all these fancy doctors! :ph34r: I think any decision to work is a loaded one, you have to weigh your priorities and decide where you would like to spend the minimal energy you have. For me, working is such a big part of my self-worth that I figure what I sacrifice in energy for other activities I save in panic attacks about health care!

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I get by on a desk job too - and feel exactly like you do. I don't really have the option to work 30-hours/week (although I agree...I think that would be ideal...or a 4-day/32-hour work-week so that extra day could go to my 'chores' and 'life stuff.') But I've actually found it hard to find a job that's not either part-time (15-20 hours/week) or full-time (40ish hours/week).

I count my blessings in that I usually work 40-44 hours/week at a full-time gig. I have friends who have 40 hour jobs that have to put in 50-55 hours for and I couldn't do that.

It's sometimes difficult, and sometimes I think I push myself too much (with work + home stuff)..but I manage. I think you're body starts adjusting and you somehow get by.

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Hi,

I'm sorry to hear you are not feeling well and I can honestly say I KNOW how you feel! For me, I was able to finish college, get married, and start a career before my POTS set in. I was a case worker for a mental health place and worked with troubled kids 9-12 hours a day. I was constantly on the go, in the community, etc... then I got pregnant and it got really bad. I cut back my hours but that didn't help. I ended up having to quit. That was a year ago. I stay at home with my daughter now, and I think that is harder than working!!!

It's great that some people push themselves and are able to work, but for me, I know that pushing myself means going to the grocery store, being able to get groceries, and coming home without passing out or feeling like i'm going to. So I understand truly not being able to work and I know there are several others out there who feel the same way. I would agree with what others have said. Start out slow. And by starting out, that may not even mean working, just getting yourself conditioned.... which may just mean walking up and down the stairs once in a day. Just depends on your severity... From personal experience, the WORST thing you can do is nothing. Sitting and doing nothing will only make it worse. As HARD as it is, you have to have a schedule.. maybe just cleaning your room and going for a drive everyday. But something.

I hope this helps. I'm so sorry you had to quit school. Just keep your head up. My husband is wanting to go to seminary school and become a minister, but I feel like I am holding him back because of my health.. I struggle with that a lot. I would also suggest the online thing too. Maybe you could take one class a semester or something... just to keep the brain fog at a minimum. I know I have trouble with that!!!!! Good luck!

Rachel

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