Are People Able To Work With Pots

[ellepee]

Hi-

I have been out of work for well over a year now. I have been diagnosed with POTS but am not sure if that is the only thing going on with me since I seem to have so many seemingly unrelated symptoms. Is POTS itself enough to make someone disabled. I'm so frustrated and don't know what else to do, and trying to figure out if I should try and more actively pursue my doctors to see if there is something else going on with me because even with the symptomatic traetment I am on, I'm still barely able to function.

[Ernie]

Hi,

Welcome aboard.

I was able to work all my life until I severely crashed 5.5 years ago. Now I am a couch potato even with multiple medication. Every case is different. Some can work full time, others part time and some like me cannot barely do simple things.

[Dizzy Dame]

Hi Elle,

I am a student at University of Maryland, but can only attend 1-2 classes a semester because of the severity of my symptoms. I am completely unable to work, so when I graduate, I'll have to go on Social Security if I qualify. I know others are able to work full time, or part-time. Some improve enough that they go from being unable to work to being able to work full time after a few years, so nothing's etched in stone.

- Lauren

[Jacquie802]

Hey there,

Tricky question..LOL...I am currently looking for a PT Job due to the fact that I was denied SSDI. It happened at the worst point though, because I had to stop the one med that was helping me. I really don't know what type of work I am going to be able to do. I am looking for a desk job with minimal hours...just enough to help me pay some bills...It does depend on the severity of a persons illness as to whether or not they can or cant work.

Jacquie

[AJVDK]

I worked up until Jan. 1st.this year. My doctors all said it was time for me to quit, and go on SSDI. So I am working on that long road. I am hoping over time I will beable to find a treatment that wirks and that I will be able to return to work one day. I am not sure at this point when that will be I am hoping sooner then later.

[Guest sonotech]

Hi Elle,

I understand the frustration that you are feeling. I worked for about 6 (difficult) years while having to make constant excuses to my employers for my absences. I had not had a diagnoses at this time and couldn't really explain my illnesses. I was forced to quit a job (that I had for 2 yrs) in 04/2005 due to multiple absences and then went on to LOSE 2 MORE JOBS from 06/2005-01/2006.

So I am currently unemployed due to POTS and am unable to work. Have applied for SSDI but still waiting for an answer. I really pushed myself working for years cuz I didn't know what was wrong with me and felt that there was no reason why I shouldn't be able to work. It was mentally tough.

When I finally got diagnosed in 01/2006 after yet ANOTHER hospital stay, I finally felt relieved to know why working was so difficult for me.

So, try not to feel guilty that you are UNABLE to work, and YES, POTS can definately become disabling depending on the severity of your case.

Laura

[dizzygirl]

Hi--I've had pots all my life.. varying in severity from time to time.. But I was able to work from the age of 16 to 20.. I was let go a few times on jobs b/c I missed alot of work due to being sick with pots! only I ddint know that I as sick with pots..

When i was 19..I had to reduce my hours that I worked.. and stop going to college.. then 7 months later i had to stop working all together and a month and a half later applied to SSDI..

the entire year of 2002..was horrid--I was finally officailly dx in 2003 when I was sent to dr. grubb-- he put me on amed that helped me. and I returned to college.. and went full time the first semester-- then kinda went down hill after that.. and had to stop going to school AGAIN!!

i couldnt imagine having to work or go to school now..my pots in quite severe right now and has been for over ayear... I too like ernie.. am a couch potato---and find it close to impossible to get daily living things done...

BUT I would love to some point be able to get well enough to atleast go to school part time. or even work!!!!

..

[halmad85]

My symptoms have only been going since October 2005, and so far I'm still working. But each day I struggle and suffer. My husband is going to school right now to be able to make more money so that I can cut back on my hours. Hopefully my symptoms will not progress to disability, but at this point I wouldn't be suprised if it came to that.

Wishing you better days ahead

[futurehope]

I am unable to work. I had worked 31 years of my life so I pretty much think that's this is the way it's gonna be.

There has not been one day in tha last three years (since I've gotten diagnosed), that I thought I could sustain either part-time or full-time work, or I would have pursued it.

[sstephan]

hi

Welcome Elle. I am new to the forum as well. That is a question I wish I knew too. I currently teach full time. Some days are better than others. Luckily, my boss is supportive. He is used to me coming into the office all shaky and tachy and just waiting for it to pass to go back to my classroom. He just asks that I not let the kids see me like that. I have been scared that he will ask me to take a medical leave. RIght now I am not that bad but have had very bad times too. I wish that someone was able to tell me the prognosis for this illness but I guess it varies from person to person.

Take Care,

Susan

[calypso]

I work part time as a copy editor at a newspaper, part time as a massage therapist and take care of my toddler full time. My paid work hours are usually about 25/week. It's tough, but I get through it. Willpower is important for me, although many others here have willpower but just can't work because they don't feel well enough. I consider myself lucky.

Amy

[bttrflyamby1981]

Hi and welcome,

Everyone is different, I myself haven't tried to work outside of home for almost 3 years. I don't know if I would be ok or not? I guess it woud depend on the job, stress level, and amount of hours put in.

Goodluck,

Amber

[vemee]

Hi, I have had pots probably since my teen years but was just diagnosed a year ago when it got real bad and I had to retire from firefighting. I am going through the social security process now. Sometimes when I am having a good day or run of days I think about dropping the social security attempt and getting a job, however then the symptoms return and I realize I am not consistant enough to be a good employee. Also at 49 the kind of jobs I could get is limited to ones that require a lot of standing which I could not do.

[JenniferInOhio]

Yes, I would be able to work with POTS as long as it wasn't a physical job or a job that had me standing all day. Fortunately, I'm a stay-at-home mom.

[HoldOnToHope]

Taking phone orders for catalog companies like Lands End, LLBean, etc. might be good jobs for folks that need to sit rather stand all day. Large drink, feet propped up.....salty snacks! Heck, better than being home on the couch watching old reruns!!

For those in college - you miight want to look in to getting additional credits on-line. It's the way of the future. High school kids can do the same thing. You can take the class at 1am or 1pm - if that's your best time of day. Work ahead when you feel good....take a week off when you're down for the count. An online education is the perfect solution for kids and adults with POTS.

[lthomas521]

Whether you can work with POTS depends on two things: (1) how sick you are, and (2) what kind of work you do. I was able to work even while I was pretty desperately sick, but I do a completely "sit-down" kind of job. If I had a job that involved standing up or (worse yet) bending over and standing up, I wouldn't have been able to work. Housework was pretty much out of the question. The other thing in my favor was that I had developed really disciplined work habits when I was reasonably healthy, so there are a lot of work-related tasks that I can do more or less on autopilot.

The problem was that my job took up all my energy, so all I did was work and sleep. I had no real life. If I could have worked only part-time, that would have improved my quality of life immeasurably.

POTS can be seriously disabling. I don't expect that someone with a bad case of it would be able to hold anything other than a desk job, if that. I believe that a really sick person shouldn't even be trying to work for pay, especially if doing so would endanger his or her health further. That's why we have disability insurance.

[MNsue]

When I was 24 I was diagnosed with Chronic Fatigue Syndrome after a bad bought of Mono. At the time, I had just started a job with a health insurance company. I was lucky to have a wonderful group of co-workers and a boss that supported my recovery by letting me work part-time. Over the years I would get better, then worse again. My company was merged with another and the management changed hands. The new management was not as understanding, and the job required a 60 hour work week. I could barely do the 40 hours and took naps over lunch in the parking lot to get through the day. My health went down hill, so I had to go out on disabilty.

Luckily with time my health improved, and one of these wonderful co-workers introduced me to my current employer. He needed someone to work part-time, and I wanted to be "normal" and have a job that I would love. I have worked as a benefit consultant for over 10 years with the same firm. My employer has a wife with CFS, so understood the ups and downs of a chronic illness. 4 years ago, I had a flair similar to the one I am experiencing now (probably undiagnosed POTS). I felt that I did not want to do my job poorly and did not want to let my co-workers or clients down, so I offered to quit. My employer refused to take my offer and set me up so I work almost entirely from home.

I know that I am extreamly lucky to have such a wonderful employer. I also think that my loyalty to my employer has made me a good sales person for the firm. I hope and pray that the kindness that has been shown to me over the years will continue to benefit my employer for years to come.

If my employer was not so willing to accomidate my illness, I am sure that I would not be working. I wish you all the best with your employment options. I hope my story will give you hope that there are good employers out there.

[dianaD]

When I first got hit with this, I tried to work for a few days, then the "hyperadrenergic" part kicked in and I stopped in my tracks. It has been almost 2 years now, and my briefcase is still on my desk at my office!

I have some professional disability insurance (praise God), but I would LOVE to be able to work at least PT. I am, however, able to do some bookwork on my computer and some building management stuff when I feel strong. And I have 2 kids that I can' kind of take care of, but it is VERY tough, we lay around a lot, and they don't get baths all that often. It's just SO hard...

Diana

[ellepee]

Thanks for everyones responses so far. I just had no idea what to expect. I was 24 and hit with all this so suddenly and was working full time and going to grad school at the time. At first I was trying to push myself and was working off and on but after a month of that I had to stop work and school completely. I wish I could get back to things at least part time, but besides standing being an issue I can barely handle car rides with out vomiting now (never mind actually driving) and I have difficulty reading due to constant dizziness which is keeping me from school. It seems as if I'm going to have to start the SS disability process.

[Suzanne]

Hi Elle, it is tough for you being young and wanting to achieve and succeed in a career. I feel for you. It seems from all the posts that there is a wide range of capabilities with POTS. You may need to take time to slow down, get some good medical advice and care and then reassesss. I would definitely not give up hope of working again, it just may be in a different way to your current plans.

I have had POTS for 3 years and worked right through until this year and it was very tough. I just had to stop, my employer is supportive and is recreating a role for me when I am well enough, it will be more home based. I was in sales and walking up and down stairs for much of the day and didn't know it was so draining for my illness. I must admit that I am much more relaxed now that I am home full time, it is allowing me to get some help for my illness and not having to worry about how i will make it through the day at work is very beneficial for my health.

I hope you can figure it all out and your health will pick up soon.

Hugs

Suz

[UnicornIsis]

Hi,

A lot of us will say we're not able to work. But you have to remember that most people that have this and ARE able to work either haven't been diagnosed becasue its not bad enough for them yet or they just haven't gotten the diagnosis yet. So those people won't be on here most likely. And the people that ARE on here are mostly the ones that aren't able to work because we have more time to post and need places like this more. So you're already getting a biased answer just by asking your question here.

I got sick at 19 in college. It was the middle of the semester. I went home at Thanksgiving Break and didn't go back until next semester. I was feeling better then when I had left but I never really got back up to full strength and didn't really realize that at the time. In the middle of the next semester a bit before Spring Break I think, is when I started passing out. I went home to try to find out waht was going on. I went to doc after doc after doc. And finally I decided not to go back for the rest of that semester just so I could make it to doctors appointments and try to find out what was going on. By summer I still was no closer to a diagnosis and made the decision against my parents wishes to stay home the next semester so I could concentrate on finding out what was going on.

I never went back to the college I was attening 2 hours from home. Once I was diagnosed and I found Doc A. and I got stablized I was able to start aking one class a semester, a night class that only met once a week, at the local community college. I had to have my mother with me and some of my major medications, the dosages were adjusted so I got the maximum effect of them at the beginning of the class. I also had certain accomodations made. I was allowed to keep my legs up in another chair. I got to class 15 minutes early so that I was able to calm down from walking the stairs and exerting the energy of getting into the class and getting my mind focused and ready to learn. By the end of the class I was having trouble focusing. I'm also ADHD like most of my family. I learned while still in college that if I kept a thing of silly putty in my hands to fidget with I could concentrate on the professor. So I carried silly putty to class and used the heck out of it by the end of class just so I could concentrate long enough to find out what the next assignment was and go home. Then I'd go home and crash. We'd get mcdonalds or some sort of fries on the way home so I could make it home, but most times I slept on the way home. It was over an hour there each way. I'd eat a lot of salty food once I got home and sleep a good 12-16, sometimes 18 hours. I wasn't able to do much else when I was taking classes.

I can't stand up for very long and I can't even sit still for very long before having to move around a bit. We know I can't work right now. I just don't have the energy or concentration it would take anymore. And let me say, that its not, not being smart or not being able to concentrate from the start. In high school I had a 4.0 GPA and I graduated 1 of the top 10 in my class, not 10%, but one of 1 through 10 people that all had 4.0 GPA's. In college I maintained an A-B average and granted, I went to a rich girls-school, but I was on scholarship. I had to keep those grades and the classes I took weren't the easy fly through classes. I was doing extra work outside the classes and got a grant my first semester there as a freshman. I was developing my own major with the approval and help of 2 profs. I used to be able to concentrate like mad!

I'm not allowed to drive and I'm not even supposed to be on my own because of all the meds I'm taking and the shakes I get where I lock up and can't move, and the way the Dysautonomia affects me. I can't concentrate long enough to finish cooking something sometimes. I forget cloths in the washer and dryer, luckly they can't burn down the house when I forget them. So things like cooking unless I'm sure I can finish it I don't do it unless my husband is home and awake watching me.

Maybe if I get more energy and can find a way to get there I'll try to work, but right now its just out of the question.

This probably will make you even more depressed when you finish it reading it, I know I'm definately not positive at the moment after writing and thinking about all of this. But if nothing else, remember that most of the ones that are able to work, probably aren't on here, or if they are they don't post a lot.

UnciornIsis

[JaneEyre9]

Elle,

I was also working and going to grad school when i was diagnosed. I thought that medicine would help me and that i could go back to my normal routine...I thought I just would have to "take it easy" for a while and not do extracurriculars. Unfortunately I continued to be ill and could not go on working.

It has been very frustrating for me because I was just starting to reach the point of my schooling where I was advancing in a specialty area, and I had great opportunities opening up to me. Life has sure been different over the past year, but to be honest, I see this as a time to heal my body, to get to medical appointments, but more importantly, to take stock of my life and my priorities. I may never have enough energy to do certain things or certain jobs, but maybe this redirection will enable me to do something even more fulfilling with my life. POTS is a huge obstacle, but at times, it can provide us with opportunities we wouldn't have otherwise encountered.

I struggle with the same questions you're asking...about what i should do and how i will work. You also mentioned that you are concerned there is something "more" going on than just POTS. I've thought that about my case too. For you, it sounds incredibly distressing that you get sick to your stomach from just a car ride! You must feel so terrible. I just want you to know that I understand the frustration and the uncertainty. I'm right there with you in spirit!

I hope all these posts help and are reassuring in some way. I appreciate you posting this topic as I am benefiting from the responses, myself.

[sally]

Hi,

I hope you feel better soon to go back to work part time, I can relate to how you feel as I'm sure alot of us on this forum can. You are most definitely not alone in this boat.

I use to work fulltime at a very physically demanding job with a lot of fast paced activity required which totally drained me completely. It was a horrible existence which required my will power just trying to maintain things. I slept a lot on my days off which I tried to arrange my schedule that I had a day off after working two days on, was usually was spent on the couch or in bed just trying to recuperate my self. Everyone at work thought I was dying I think, they were always making comments about how pale I was, about how sick I looked or about my weight which upset me because I couldn't do anything about it or have any answers for it when questioned.

This was when I didn't have any answers for what was wrong with me at that time and I had completely come to realization that my health was just something I would have to tolerate in life with no answers as to why. I cried a lot before going to work everyday just because I didn't have the energy to comb my hair most days let alone face the day with a smile. I also worked closely with a person who had major mental issues as well so the stress of dealing with that was horrendous on my health. It was tough. I tried not to let any one know how I felt at work because I worked in a tough environment with people who (at the time) didn't have a lot of sympathy or consideration for anyone other than themselves (that?s a long story).

Finally after being put out on medical leave for about 4+months flat on my back due to exhaustion and back & stomach problems (I was physically a big mess), went back to work part time and that is a struggle for me at times, but its better to maintain part time work. Although, It takes me about 3 hours to get myself together for work.

The work environment also had changed which made things a lot more pleasant to work and a lot less stress. Thank goodness for that one! I have a great supervisor which helps. Plus my attitude towards people had totally changed about caring what they thought and not letting it affect me and I learned if it is not good for me than I just don't do it, period!

I accommodated myself first from that point on after being out flat on my back. I vowed never to allow any job or another person to run me into exhaustion again. It was a valuable lesson indeed.

[mom4cem]

Hi,

I have changed jobs but I have still been able to work. I now work p/t in the schools during lunch. It does require me to stand for 2hrs, but most of the time I can do this with minimal symptoms since I take a dose of bblocker right before I go to work.

[willows]

Hi, I've had A.N.D. ( as its called in UK) since I was about 15 years old.

A first I did work but became so ill at 17 I had to go into hospital for months.

I then got married had my three children and just ran the house and looked after the children as best I could.

Divorced at 30 I then tried to run my own company , this was O.K. until my now ex hubby put everything onto my shoulders and it became to much and I got worse and worse.

Now aged 50 ( 3 children, four step-children , 4 grandchildren) and unable to work at a normal job, BUT ................I discovered I had a gift for writing and am now on my second novel!

Every afternoon when I go to bed to 're-boot' my body I spend half an hour on the lap-top working ......its feet up , head on a Y pillow, blanket over my knees , video on the telly and tap, tap, tap .

This for me is heaven as I feel that my education has not gone to waste , I feel useful , funny really how such a little thing can have such a big effect on your life !

Some days I'm so ill I cant write a word , other days I do a bit more, its swings and roundabouts and I've learned just how much to push myself ................( cough, cough ) she says' ' she who overdid it last week-end and had to spend three days with her head in a bucket and unable to walk ' !!!! never learn will I

Yes....I'm a comedy writer !!!

Kind regards Willows.