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Who It Working Outside Of Home???


KellyErnst
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I have continued to work full time since my POTS symptoms developed. It was EXTREMELY difficult in the beginning and very scarey not knowing what was wrong. I would work all week and then weekends not even leave the house until Monday morning, I would just rest up. Working meant no energy for anything else, no socializing, no household chores, I put what little energy I had into holding down a job. When I look back, I really only missed 1 or 2 days total in 2 years due to POTS and this was after my first acute episode. I have had to "hide" my illness at work which I do not recommend but I refused to quit working, and I really couldn't due to all my financial responsibilities. Eventually I was able to tell my boss I have "low blood pressure" not something life threatening and I have to sit if I feel dizzy. I put in terms he would understand.

I could barely walk from my car to the evelvator or the restroom for the first 6 months but after I got stable on meds and eliminated the acute epiosdes of presync it was easier, not great, but I could do it. Now I still have mild daily symptoms but they are more under control and I am so glad I kept my job. When I saw Dr. Grubb for the first time in June he said it was GREAT that I still worked and he made a point to encouraged me to never stop working for many reasons, insurance, independence, etc. I know I am probably unique, since I don't pass out and also I have a job that involves sitting at a computer so I can function without standing. I've had my job a long time so I know it well, that helps. Each individual has to do what s best for their personal recovery, for me I wanted to keep working.

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I had to leave work for months. Fortunately I did not lose my job and had already arranged to come back part-time prior to POTS becoming a problem. I now work 4 days a week, primarily so that I have adequate time for my 3-year old daughter. I plan to go back full-time next year.

Everyone is different, it seems, as far as how incapacitated they are, and how long it takes to find a treatment regime that works. Average "recovery" time is supposedly 4 years, according to published literature/my specialist.

Katherine

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When I first got sick with POTS I was out of work for about 2 years, then I went back to work on a part-time basis and within a few months went back to full-time. Since then I've basically had a full time schedule (going on 5 years or so now). I'm lucky in that I don't pass out though, and feel pretty normal when I'm sitting. Luckily my job is computer based and I can handle sitting at a desk all day :) Before POTS my job was not computer based, and I actually switched careers in order to have a job I felt I could handle better. It all works out in the end though because I enjoy what I do now a lot more than my previous job ;) Also, I'm very lucky in that I can work remotely and so often work from home.

Working up to full-time is a good idea. I find once I get used to spending that amount of time at work it's not that bad for me. In fact I sometimes find I feel more tired on the weekends because I end up pushing too hard on things like cleaning the house and I crash. At least when I'm at work I'm limited in physical exercise - lol :P

Pam

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I work full time too. I tele-commute 3 times a week since I live 70 miles from work (I love those days). I had a hard time last year after my gall bladder was removed and it took me about 1 1/2 months to get back to work instead of just 10 days :) but other than that I have done ok on meds. and continued to work without many problems.

A flexible employer helps a million here.

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I work full time as well. Like the others who do, it seems desk jobs are crucial to this. Other helpful coping mechanisms- plenty of water, wearing layers and having an under-desk blanket to keep my fluctuating temp under control, being able to put my feet up when I need it, being able to close and lock my office door and nap when I need it or just sort of keep to myself and not have to pretend to feel well (if I couldn't do this, some days would just be waaay too much. There's only been 2 episodes thus far where office-mates have seen me potsy- once when I fell out of my chair and landed in my trashcan in front of my secretary in a presyncope episode, and once when I was seriously tachy and shaky during a meeting to the point where my boss had to open my sprite for me. I'm lucky on two fronts- first, I'm really still quite functional, and second, I have the privacy and freedom of a professional position so I can manage my time and tasks according to how I feel most of the time.

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I was reluctant to reply because you asked for folks who are working AND have their POTS under control. I do work full time, but I wouldn't exactly say my POTS is controlled. I have my good and bad days--and last year I used up more than my sick time and personal days--I ended up taking a few without pay. Also, b/c I work for a school system, I have many days off that the average working person doesn't, which I think contributes to my ability to stay employed. The biggest thing is: I have off from work all Summer, my worst season with regard to symptoms.

Nina

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like others, i had time off when first dx'd. then i went back full-time and was going to school and of course was totally overdoing and got really sick again, so then had more time off. then went back to part time work and part time school, became a wreck again, now just part time school (but it's nursing school, so it's like full time with all day clinicals and labs and stuff) and just getting things back under control again with my body.

i still have good and bad days, some seemingly without warning, although i'm nowhere near as out-of-control as i was when first dx'd. i'm working on getting re-conditioned and getting stronger, eventually want to go back to work full time. hopefully, the upward trajectory of my getting healthier and in better shape will meet the downward trajectory this illness seems to be presenting in me somewhere high enough on the functioning scale to work again.

i wish you all the best. it can be done, but remember your health is most important! :-) good luck, peace, lulu

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Hi

I answered a similar topic in this forum just a few minutes ago. I thought of a few other things after reading these messages. I have a recliner in my office. When I have a bad day, I can lie down for 10 minutes for a mini-boost. Also, they adjust the thermostat for me or get me a fan.

I have two children, ages 5 and 10 years. My husband stays at home which takes some stress off me. Sometimes after work I have to stay in bed most of the rest of the day to recover for the next day. I have no social life. I cannot do as many things with my family as I would like. In summary, I do sacrifice activites outside of work to have energy to work.

Karyn

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