For Those Who No Longer Work...

[Gena]

Let me try to explain my question further...

For those who had to give up work altogether or move into a part-time job, was it because you physically could not sit or stand all day or focus or other physical/mental reasons?

Or was it due to the stress of the job itself causing your symptoms to flare up to a point where you decided it was not worth it to push yourself and cause flare ups?

The reason I ask is b/c I work full-time and can function fairly normally most of the time (although I struggle with dysautonomia on a daily basis. However, I don't get too dizzy or faint - which would definitely prevent me from working!

My POTS flares up when my job stress gets unbearable. During those flare ups there may be weeks or months at a time that I don't sleep, have arrhythmias, my BP is rock bottom, have adrenaline rushes, etc. - but I still am able to perform in my job, albeit at a much lower level than I'd like!

For those who had to give up your job, did you find that it eased your symptoms / flare ups at all after you quit?

Thanks for your feedback.

Gena

[AJVDK]

This one is alittle hard. I had to quit, due to the fact I was taking so much medical leave, and d my last two weeks on the job, I was taking in my oxygen to get though the day, with the sob, and custer headaches. When I stopped working things got a little better at first, but things have just gotten worse for me. My doctro are trying new meds, so I am not sure how much that plays in as we keep changing up things. I am hoping to stable out and go back to work. I am not sure what I will do at the last five years I was a manager, in a high stress job, so I am not sure that would be good to go back too. I went to college for photography, and there no way I could stand all day, as if I go very long now I am in my wheel chair.

One thing I know is to live one day at a time. I have found it gets me though each day.

[Poohbear]

I had to stop working primarily because of near syncope (which was really dangerous since much of my time was spent on the road), severe uncontrolled tachycardia that was not responsive to medication and fatigue. I had plenty of other symptoms but these were the ones that intially took me out of work.

Migraines were also a big issue.

I tried cutting back my hours, working from home and kept getting worse so eventually I went out on total disability and haven't been able to go to work in any capacity since that time.

I really miss my career a LOT!!!!

[Ernie]

Hi,

I stop working because I was fainting every time I stood up. I could not wash myself, cook or go to the toilet.

[lalalisa]

I developed dysautonomia while working as an administrative assistant. At the time I didn't know my diagnosis but for a couple of weeks I would (somehow) get to work and sit down at my desk and realize I was just too symptomatic. I would end up leaving within about 30 minutes crying the entire way home because I actually couldn't perform my normal tasks anymore. (sometimes I'm not sure how I drove home!)

The stress of not knowing what was wrong with me at the time added to my symptoms for sure but I've been unable to work now for 3 and 1/2 years. I've even looked into various work-from-home options but find everything too overwhelming right now (my mental clarity/stamina is a big issue).

I'm glad you are able to work and hope you can continue.

Lisa

[DancingLight]

Gena,

I don't have any answers for you b/c my symptoms were so severe from the start right after I graduated from college that I never actually made a real 'choice' about whether or not to work. I resigned my job before I ever started it!

But, I wanted to chime in with support b/c it sounds like you are struggling a bit and I wanted to send good thoughts your way...

And say that I love the name Ruby and I am so glad your new puppy is doing well.

Emily

[worththewords]

I was working in the music industry when I started getting very sick and eventually diagnosed. I had to quit due to the stress of the job. It was a very high stress job and highly demanding. I noticed I did start to feel somewhat better when some of the stress was out of my life.

I tried other jobs but soon found that it was just too hard to be reliable considering how unpredictable this condition really is. Some days I can wake up and have a good day. Other days I can wake up and need to just go right back to bed.

I'm a full-time college student now, taking all of my classes online. I'm sure whatever I end up doing with my degree I am going to have to do for home or have a very flexible schedule.

[Gena]

Thanks to everyone for chiming in. I'm just afraid if I continue to push myself in my job that I will crash harder than ever and truly not be able to work again. Ideally, I'd like to work part-time. I love my job and what I do and I don't want to give it up completely, but until I win the lottery, I guess I'll have to keep on truckin!

So based on the responses so far, it looks like most people had to quit because POTs just completely disabled them and prevented them from working. I sometimes feel like a whimp b/c my body cannot tolerate stress very well since getting POTS two years ago.

Em - good to see you posting more frequently again. I tried to PM you, but I think your mailbox is full as it wouldn't go through.

Would love to hear about more experiences on this topic from others. Thanks!

Gena

[DancingLight]

Yup, the PM box is full and I am getting noodged to clean it out by a certain other little Sunfish!

Feel free to use the email option instead!!!!!!

Em

[JaneEyre9]

Hey Gena,

Don't feel like a wimp. Stress definitely causes POTS flares and drains us quickly of our "spoons."

I have felt the same fears about "pushing myself" leading to a crash, and sadly, my fears were confirmed. I pushed to go back to work last summer and ended up passing out in the middle of a big meeting!

The event really got the message across about how sick I was, and it helped me to recognize that it wasn't wise or safe for me to continue pushing my body to do something it just couldn't do. Also, my symptoms were much worse after this crash/syncope.

Is it possible for you to arrange a part time schedule with your job? A lot of times supervisors will accomodate someone with a disability who wants to work part time because the employee ends up producing more effectively when the schedule accomodates their problem.

I hope that things work out for you... in the mean time, take care of yourself!

[tammyokc]

I loved my job and worked at the same place for 12 years. I worked for two years with full-blown POTS but was so dizzy and had such high tachycardia that I felt like I was having a panic attack 24/7. I tried to hide it and keep on smiling but after almost passing out each day and not knowing how I made it back and forth to work in my car sometimes, I knew it was too dangerous to be out on the road and walking around. I hate to admit it because I loved working so much, but the only reason my symptoms have improved over the year and a half I've stopped working is because I don't have the stress of trying to keep up the facade of feeling well. Just getting a shower, putting on makeup and getting dressed has taken so much stress off of me. I still am disabled from POTS but not having to be somewhere everyday has been my best medicine. I was so dizzy from looking at the computer all day and trying to be professional, that I made myself much worse by staying. I even tried to go from 8 hours a day to 6, but I just kept getting worse. My employer was awesome and they did everything to accomodate me, but I know now it was the best decision.

I pray you can continue to keep it up. I just had to finally decide if "white-knuckling" everyday at work was worth making myself worse!

[yogini]

Hi Gena,

I just saw your post and wanted to say that I am pretty much in exactly in the same situation. I can go to work and I generally feel OK, but when things are stressful, my POTS symptoms really flare up. I can still make it to work and function enough to do the job, but not my at best. But these times are really miserable and each time I really wonder why I am doing anymore. When I first got POTS, working was a lot harder, but it is actually getting easier to deal with over time. I have been trying for the past year to something a little less stressful, but it's not so easy finding the time/energy to search for a job. I don't really have any advice, but just wanted to say me too!

-Rita

[morgan617]

I worked sick my whole life, but when my symptoms got really bad in 2000, I told them I had to cut back or quit. Someone picked up one of my days, but then I found even that was too hard. For me, I think the physical and emotional stress of my job (a nurse) didn't make my symptoms worse, they would have happened anyway. But it sure didn't help either.

I was still working up till the day of my ablation. I worked a 14 hour shift. I was never able to go back after my ablation, but looking back, I wonder how many mistakes I made that I wasn't even aware of. It is scary, not like...did I put pickles on a burger for someone that didn't want them,...but more like, did someone get a MED they shouldn't have. Nothing has ever come back to bite me, but I still wonder.

In retrospect, I should have quit, at least nursing, long before I did. However, I wasn't trained in anything else, having done it for 30 years.

I haven't worked since 3/18/03 and my health has steadily declined over the last year or so. So, I don't really have any answers for you. I couldn't work or go to school now, if my only other choice was being on the street or dying. Did working when I shouldn't have been contribute? I'm pretty sure all the years of a stressful career did not help, but I will never know.

I would go back to work in a New York minute if it were possible, because it's just as stressful being ill and watching the effects it has on your family and finances. But I know I will never work again. If I did, it would most certainly not be in the health field. It's a moot point at this point, but I sometimes wonder. morgan

[bttrflyamby1981]

It was both for me.

I was pregnant too so that played a role. I know though that not much has changed. I need to be able to control when I can sit and how much I'm running around. Not many jobs allow that. Plus stress can make me sick or give me a migraine.

I was a hostess, I was running around and always having problems. I sat on a stool (I stradled it like if you were on a horse) to do some of the work, but they alowed that because of the pregnancy.

I stay home with my children now and babysit a few days out of the week. I also started Mary Kay! Both "jobs" I'm my own boss and decide what I want to do. It's great!

Amber