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Those Of You Who Still Work, How Do U Cope?


janineerrn
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Hi All,

It has been awhile since I posted. I hope you all are getting along without more difficulty.

I was forced to go back to work. My privte disability dumped me and social security was well, just a pain. I was fortunate enough to get a job as a nursing supervisor for a company that helps keep the elderly and disabled at home and out of nursing homes. I enjoy the work and the people I work with understand my illness and are very flexible about letting me do work at home. I was able to save my house from forclosure and keep my car from getting repossessed.

Nothing has changed with my POTS. The combo of high dose lexapro, Innopram LA, Klonopin, and Reglan keeps me functional. I also changed a lot in my diet. But the fatigue from working is unreal. I work and come home and sleep. How do those of you who still work handle it?

My husband is making me nuts. He thinks because I went back to work that I must feel better and expects me to be my old energetic self. UGH.

Im going to read ll the posts now and catch up with whats going on here. Thanks for any advice in advance!

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I wish I had some good answers for you. I am no longer working; I had to stop three years ago but I worked for 5 in a situation that sounds similar to yours.

The only reason I was able to remain working as long as I did was because I worked out of my home, pretty much set my own hours (with limits though), had a boss that was flexible and not a micro-manager. Like you, I would come home and crash and I would sleep most of the weekend. I had no life except to work. Eventually, even that became more than I could do.

It is very hard to get others to understand that you are not necessarily better...even if you "look" good.

The only thing I can think of that helped me some are things like....easy meals and freezing portions when I could. If I had to brown beef for anything I would buy extra and prepare some for taco's, some for spaghetti, some for meatballs. I invested in a good foodsaver (because I don't like freezer burned food and I could portion control much better with the foodsaver). If I was buying chicken-- boil some and use some for a casserole, some for chicken and dumplings, some for chicken salad.

I tried to make several dishes at once if I was able to get in the kitchen at all.

I had to be very strict with my schedule--set aside a day and time to pay bills and review mail on a weekly basis. I tried to multi-task as much as possible and I had to keep lists for EVERYTHING.

I would put a load of clothes in the washing machine while brushing my teeth, empty the dishwasher while my toast was in the toaster...stuff like that.

I can't do these kinds of things now and I don't know if any of that will help you or not.

Depending on where you live and if you have a little extra income, there are some places were you can buy prepared meals. Check out this site http://www.supersuppers.com/locations.php

What about hiring a responsible teenager or college student to help dust, vacuum, run errands for you?

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when im feeling ok and my pots is now only really moderate to minor (although ofcourse at any time theoretically out of teh blue it could return to its moderately severe to severe state) im fine pretty much, just feel a but out of it and have trouble focusing on people when im standing or tired.

At its worst its a shocker and it ruins so many aspects of your life, and work is the main one for some reason under those neon lights and stuff.

My little helper is licorice! It works wonders by giving a shortterm boost to BP and longterm by increasing blood volume. I find the tea too strong and i move into migraine territory, but low doses or just lollies with it in it boost me out of a pot hole very quickly. Give it a try.

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Hi,

I am somehow dragging myself through full time work at the moment (hours cut from 56 to 44 for me last month after a month off sick). I do find work exhausting but it is also an improtant part of my life. I was such a career driven teenager and worked so hard to get where I am now that I couldn't cope psychologically with having to give up work.

When at work I make sure that I always have a bottle of cold water with me to sip - means I have to go to the loo a lot which my colleagues find odd but it seems to help. I try to avoid standing. If we are standing in a group I am always the one that goes to fetch something or go to the computer to look up info - and excuse to keep moving or sit down. If forced to stand still I wriggle a lot - pumping my calf muscles and squeezing my arms and chest muscles, it seems to help for a minute or two. When I get desparate I just sit on the floor - my colleagues have had to get used to me suddenly sitting at their feet!

I am also really careful about meals. Never skip a meal but eat small amounts more often. A large meal drops my BP and makes me tired so I snack more, toast is really good.

I do get really tired though. The last 2 weeks running I have got home on Friday and gone to lie down at 7pm before dinner and slept soundly till 2pm on saturday! I keep a big bottle of water by the bed and seem to manage going to the bathroom without really waking up properly. Not sure what I'll do this weekend as I am working till 10pm on Friday and then 9-5pm on Saturday and Sunday.

Flop

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I no longer watch TV, which gives me some extra time for housework. I no longer cook either and my husband has taken that over- plus the grocery shopping. I do need about 12 hours of sleep lately. I think because "I waste no time" my husband doesn't dare complain.

As terrible as it sounds, I have the benifit of haveing chronic Hepatitus C. My husband has seen co workers who have had it less time then I- go into liver failure and die. SO this makes him think I'm doing well! I have done the treatment and my current level of damage is low so my problems are dysautnonia related.. You know how people make they own conclusions because they trust their own judgement above "facts". Its the you look good syndrome.

ANYWAY I think if you expect people NOT to understand- that helps. Also I don't explain things- I leave them in the dark and that has the effect of "Oh man I wonder what's wrong with her".

That works for me. :unsure:

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As ramakentesh stated, for many of us, POTS can be mild--but then can also swing back into more debilitating states. I am functional with medication and can work nearly full-time and have energy for after-work with no problems most of the time. But recently I have been having trouble again with symptoms and had to take some time off. It is different for each of us, and things can change over time. Some of us are not affected as badly as others. I need to make sure to stay hydrated and take extra salt each day, along with my medications. I also need to get 9 hours of sleep a night.

Katherine

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My POTS is also relatively mild, with flare ups, like most of the others who are able to work....but like you, for the first year after I developed POTS it took all my energy just to make it to work and back. My job is pretty bad and could be 80-90 hrs a week if I were "full time". After that first year, I decided I need more of a life and scaled my hrs back to 80%. That has helped a ton, and any flexibility you can have in your job always makes things easier.

I'll echo what the others have said - the basic POTS treatments, like fluids, salt and compression hose are all key. I have tried to establish a routine where I do minimal cleaning (I have a housekeeper who does the heavy stuff every other week) and strategic cooking/takeout, like Poohbear. I know exercising can be brutal, but I found that exercising whenever I could gave me extra stamina over time. I literally started off at 2 minutes and worked my way up.

One other thing that helped me at work was to walk around and do a couple of laps around the floor every few hours - it helps to practice walking and also counteracts the pooling. I was embarassed to do this, but over time it got easier and people at work even came up to me and commented that I was walking faster...I didn't even know they all knew I was sick, LOL!

You may want to search on this topic, as there have been a lot of great suggestions in prior posts.

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I commute from Long Island to Lower Manhattan everyday, which is a 90 minute ride (each way) on the train. I use this time to rest before and after my day. My work day is about 13 hours long. Most days, I pass out on the train ride home... which really helps. At home, I have two kids that keep my evenings busy. I usually get about 3-4 hours of sleep each night, which is more than enough for me.

Similar to other responses, I carry Gatorade with me at all times and I make sure I eat small meals all day. I have a hard time standing for any period of time, so I usually grab a chair. By the time Friday evening arrives, I'm usually wiped out. Saturday & Sunday are recovery days.

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My symptoms are milder than some. My biggest impediment is eds-joint instability-- between pots and eds, I just don't stand well. I change positions all day long. My job is pretty flexible-- teaching and research at a university. I have a reclined in my office that I read, grade, and meet students in. I teach from a seated position.

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I went to the doctor last week for a checkup. I explained that my main complaint is overwhelming fatigue. All I do is work and sleep. She said to work less. I said that I would take that advice if I were Canadian, but I really didn't feel like giving up my health insurance.

So how do I cope with working? Not well.

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Guest tearose

Gosh jj, your schedule reminds me of my "olden days" I just can't do that anymore! Please don't burn out!

I am still trying to find part time work. I think between my tons of experience (aka,age) and my seat cane, I am being discriminated against!!!

having a cold, grumpy day, sorry...

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I work about 40 hours a week, - full time, but my work is sitting

Even though, sometimes it is exhausting...

When I have a flare up, I take off from work for about 1 week or a few days to recover. I am glad my insurance and work allows me doing so, because I cannot imagine how I would do without all these days off.

I cannot stop working. We cannot afford it. Therefore, I always try not not be too much off from work...

Compared to many other people I have read, I cannot say that my POTS is unbearable. I have some flare ups and many things I cannot carry out, but I can still walk and work.

I cannot exercise and I cannot carry the heavy part of the housework. In fact, I cannot do most part of it. My husband does. I cook and do minimal cleaning. Even cooking has to be limitted. I cannot cook too much and become too tired or a flare up will start...

When we need some grocery shopping we go together. I do not carry weight but just select the items needed. Even though, most part of the time, around 30 minutes after getting to the grocery, I feel the symptoms get worse and we have to finish in a hurry to relax in the car... Sometimes, I am having a flare up later or the following day. This has happened since 2005...

At work, I am always drinking some water or juice and eat small snacks, cookies, salty almonds... I also have a hard time standing for a long period of time (as mentioned by Flop), so I usually sit. By Fridays, I am also wiped out. Saturday & Sundays are recovery days, sometimes to rest, sometimes to recover from a flare up.

I try to avoid standing and if I am standing in a group, I always move my feet and legs and try to sit as soon as I can. I avoid speaking loud.

I try not to walk too fast and try to sleep enough. I avoid going late to bed and not to exhaust myself too much.

Well, let?s say etc. for the rest, because I would be writing a long, long post...

Thank your for reading.

Love,

Tessa

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I work full-time. To be able to work I need: 1) meds 2) exercise 3) low carb diet 4) lots of sleep. If any of these things are not happening, then I'm sicker and have to suffer it out at work.

During the workweek, I don't go out anywhere, I come straight home. Not even to dinner or anyplace as I need to go to bed very early, need lots of sleep.

And the support of my DH. Sometimes with men you have to tell them over and over what you need and how you feel. If I don't say anything for awhile he thinks I'm "better", even tho I just don't want to discuss it anymore. We've been married 26 years and he still doesn't always get it.

I'm trying to make it to retirement, which is 12 years. But I can't think of it that way, thats too overwhelming. Some days I get to work and think I won't make it an hour. So I try for the hour and sometimes I shoot for noon and then "surprise" I make it all day.

Every day is a big challenge. Take it one day, and sometimes one hour, at a time. Communicate to your husband what you need from him, try to make him understand. He won't *really* understand tho, so the bottom line is that you have to take care of yourself and do the best you can.

Take care and hang in there !!

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  • 2 weeks later...

I work 9am to 5 or 6pm at a desk job primarily. Can you lie down during your lunch time. I find that lying down for 30 minutes during the day helps me. Also, I started using a motorized scooter during the day which helps to conserve my energy when I do have to go around the building. If I did not work, I would easily be on half the medicine that I am on now. Can you maximize your doses of meds or add more meds? Salt tablets allow me to hold in more of the water that I drink without urinating it out all the time. Are you wearing compression stockings?

I could not do what I do if my husband did not help me. He helps the kids with all of their homework. I don't do the laundry or clean the house.

I was in a similar situation as you 4 years ago. My job was too much for me. I would come home and just stay in bed all night until the next day of work. I felt like I was not there for my husband or children. I felt like I was drowning physically. I was able to cut back on my hours at work dramatically and still be the only bread winner for the family. I had to switch to a different employer. I was lucky to have that opportunity but I still struggle with a lot of fatigue. I hope that you can find the right balance.

Karyn

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Thank you all for your posts.!

I keep myself tanked with water and snack on salted almonds, olives etc.. My biggest problem is fatigue with nausea a close second. I had a big attack last week. It was the first one in a long time, a full blown passed out, sweaty heart racings, vomiting fest that lasted about an hour. I took a long weekend and stayed in bed, after the big attacks I have no choice, my crdio says the atacks are the equivalent of running a marathon.

I have no choice but to work. The sad thing is that when I was getting disability and able to stay home, my quality of llife was so much better. I did yoga and I was able to take nausea meds. I cant take them now because they make me too fuzzy headed to work. Im down to 5 pills a day from over 20, which is good.

I dont know, I guess I will get through it.

I dread the summer heat!

Thanks for the support you all, I really needed it.

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