Is Anyone Working?

[Bigskyfam]

My diagnosis came quick so I've been off work for just a few weeks. Hoping to go back. I was on my feet 8 hrs a day. Would anyone care to share their experiences? I've medically withdrawn from school already

[E Soskis]

When the disease really hit hard, back in 2008, I had to take a desk job. Since then, I've still had periods where I had to take extended times off (several weeks at a time) from the disease or complications of the disease related to other surgeries and illnesses. I have Intermittent FMLA and renew it every year. I would suggest that you protect yourself with the Federal "Family Medical Leave Act" so that your employer won't turn around and fire you just for being sick. FMLA guarantees you up to 12 weeks unpaid leave per year off if you are out due to your medical condition.

[Bigskyfam]

Thanks for the post. Just don't know what to expect. Still all new to me

[Chaos]

I always worked part time so couldn't get covered by FMLA, even though I'd worked for the same employer for many years. I too was on my feet 8-11 hours a day and had a pretty physical job so couldn't continue with that. My doc put me on medical leave "for 8 weeks" to get symptoms under control. That was 21 months ago. Still haven't been allowed to go back to work.

[gjensen]

I am out of work. I was a commercial construction superintendent. Looks like I will have to figure something new out. I cannot see climbing to the sixth and seventh floor etc. lol.

[KareBear]

I've been unable to work for about 5 yrs now and dont see any sign of being able to work again.

[Macca]

It took me 15 months to get a diagnosis and I had no treatment over that period. I felt so ill during that period that I had to stop working six months after the illness began. I'm based in Australia and have income protection insurance, so I was able to claim 75% of my pre-illness income. That helped a lot and meant I could focus my efforts on recovery, in particular graded exercise and pacing myself. My symptoms have gradually become less severe and I've found reasonably effective medication, so I was able to return to work. I do a desk based job and now I just need time off every 3-4 months to deal with a 'flare' of symptoms.

[gjensen]

Macca, that is what I hope for. I might not be able to do what I have always done, but it would be nice to have a shot at doing something.

[Bigskyfam]

Thank you guys so much. My employer had been patient.No indications for work from my doc...she did say when you can get back to work you'll have to sit... Our last visit wasnt great... After my experience with betablocker, i told her i wanted to start with sodium/ fluids/exercise... No meds at moment. She said you won't see improvement if you don't follow the plan and left the room. Her nurse came in and give a rx for compression stockings... No strength or dx code. So I can't get them. I'm in

Limbo. I think I'll have to be proactive and do something. Just wish someone could tell me what I should do... I don't know fmla/short term/long term... Who initiates it etc. my sick leave is gone... Now we are struggling. My hubby is working and helping with household and kids when I can't. I'm the only one in my area with pots.. So I feel alone. I don't know what to tell my employer. Mecca your situation with work sounds ideal. Hopeful

[Chaos]

Can't help you with FMLA, but for me I had to go to employee health when my doc put me on medical leave for the 8 weeks. They were the ones who started the short term disability process. I only qualified for one week of short term. However, they also said I should begin the process of applying for long term disability at that time "just in case" as it can take a long time to get it. Then if I was able to return to work it was no problem to not use it but if not it would be available. I stalled a long time in applying as I was convinced I was going to be able to get myself back to work but eventually they pretty much forced the issue. I still plan on getting back to work somehow/sometime but at this point it's not realistic or feasible.

[Rebeccawithdogs]

When I was first diagnosed with POTS, I could barely make it to the store for food, let alone work. I called in sick a lot, begged my doctor to take me off work, etc. But when I ran out of sick time, I had to work. It was the most difficult time in my life physically. My supervisor was supportive, she came up to me one day and was very excited. She told me that she had just found out the Yellow Wiggle, from the kids group, the Wiggles, had come back to work after a rare illness, POTS. Though forcing myself to work was the hardest and unfair thing I ever went through, ultimately I think it helped. POTS for me, has improved, and God I pray it does not come back to the way it was. I can understand those who can not work. Would rather not have worked but it was a necessity and I did not by any means have a desk job. I don't know how I did it, it was miserable. Still find myself very fatigued and POTS in the am, but it used to last all day. Good luck and God bless

[margiebee]

Not to sound "braggy" or anything, just offering my perspective, I work part-time and go to college full time. I probably push myself slightly past my limits, but I just genuinely can't accept not being able to do these things. I work a sales associate job, so I work with my managers on allowing me to sit down frequently, take lots of drinks, etc. I do take weeks off sometimes. And I only work about 10-15 hours a week. But I feel that this helps me keep a sense of normalcy, and not get too down on life thinking "I'm so sick". Its a balancing game for me.

[Bigskyfam]

That's great margiebee! That is encouraging. I can only hope I'm in the same boat. I went to store with hubby today. Wiped out. But blessed that I tried and could.

[Bigskyfam]

Margiebee do you mind if I ask if you are on meds

[Bambamjr2013]

I work in a warehouse on my feet for 8 hours a day. Its a struggle but God gets me thru. Thank Goodness.

[lynnie22]

I work in my own business, but not on my feet. I sit in my work. Still, there have been days I've had to cancel clients last minute, hate how I can't really plan how I'll be feeling. The first two years of POTS were pretty mild, only the last year has become difficult. I think there are good periods and bad ones. I don't know much about FMLA. I only know that the last time I was sick, a long time ago, with what was then diagnosed as CFS, I was on disability. Got better after a couple of years. I think balance is the key word for all of it. Not overdoing it. It doesn't work.

[Bigskyfam]

Another one yay what helps you get through? Meds? Breaks? Water?

[margiebee]

Bigskyfam, I take Effexor, it helps keep my blood pressure up pretty well!

I also wear compression socks to work, just to keep the blood moving up to my head while I'm standing.

[lejones1]

I work part time (about 25 hours a week) and take one class at a local university. Right now it's the perfect balance for me - I love getting out of the house and actually doing something, but I still have to lay down for a few hours every afternoon to be stable and functional. I also use weekends to rest up.

I've had POTS for 18 months - it came on suddenly after an illness and I had to quit my job and move home with my parents. I tried twice to work full-time - unsuccessfully - and both times ended up mostly bedridden for weeks or months. Both times I wasn't ready - I was just being stubborn and felt like I had to.

This time I was "stable" for a couple of months before I started working - leaving the house several times a week, etc. The first few weeks working were difficult - like my body was adjusting to spending more time upright. But I'm lucky to have a flexible boss who lets me take a day off if things get bad. I'm not on medication - I just use compression stockings and lots of water and salt.

Also, stay positive about your possibilities for the future! This spring I was housebound/largely bed bound for 4 months. I struggled to walk to kitchen, so the idea of working again seemed so far off I didn't even consider it as a possibility. Then suddenly, with no change in treatment, I got a lot better. I know I could always relapse again, but I'm trying to focus on the possibility of working full time once I find a medication that works.

My advice would be...assess how much you can reasonably do and stay stable, and then try to do like 10% more. If you have to spend most days on the couch, jumping straight into full-time work is probably not a good idea. On the other hand, getting out of the house and doing something, if it's physically possible for you, is so good for morale. Also, I think for me it's helped train my body to get back to a normal routine and movements. Try to find a flexible situation - whether it's taking a class or working for yourself or finding an understanding employer.

And tips for getting through - well as I said I wear compression stockings to work. I drink 20 oz of salt water with a splash of juice first thing in the morning. I work in the mornings, so I try to shower at night to avoid getting really dizzy right before work. I've been open with the people I work with about my condition, so if I sit down on the floor in the middle of a conversation they're not surprised. I don't do this, but I know a guy with POTS whose employer got him a laptop instead of desktop, so he can work laying on the floor if he has to. There are plenty of little things you can do!

[Relax86]

I got back to work. I work in outpatient Physical Therapy so I'm on my feet most of the day. I do have opportunities to sit and do charting. I was off of work from Jan 2012 until mid Feb 2012....I went back mon, wed fri until Mid march. Going back to work slowly was helpful. In my case it also seemed better to move a little because the more I sat the less I could get up. Don't get me wrong, when I did get up in those early weeks I felt terrible. But small steps were important. I used salt, hydrocortisone, midrodine, tons of water, coconut water and slow progressing weight training to get back to work. I always wanted to start to run but I couldn't and still can't control my HR when I take a fast pace walk. As far as cardio my body won't cooperate - plaguing me when I push to try. So now that I can grocery shop, carry the bags, work, play - all with slight modifications I don't push to run like some of the forum folks.

Regarding applying for long term disability I do need to learn about it. I'm also an amputee with a dislocated hip from a birth defect. POTs/dysaut took me out worse than the leg ever did but inevitably I will not be able to work until a regular retirement age. My POTs symptoms seem to be under control, but they flare fairly easily when triggered. It never fully went away. I am grateful for the recovery that I did make because I know some here on the forum are just so sick and can't seem to find a way to get better. But this bout (my 3rd) only let me get about 90-95% better on my best weeks.

So I say ~ it can be done ~ fight to get your life back and life like you will. Think that you will. Meditate that you will. Good luck ~ Tracy

[Bigskyfam]

You guys have been such a blessing! I'm learning so much and I'm in the medical field, go figure. Started cardio/ picking up compression socks/ v8 on tap....

[POTLUCK]

I am working. I was off for a long time. Interestingly, it is not breaks that help me, it is the opposite. Sitting is hard on me, exercise and getting my blood flowing helps, so when I can I get up, and walk quickly, prefer to carry things places myself. The hardest part is when it is necessary to stand in one place. Sitting is easier than standing, and walking is easier than sitting. Plus walking has the added benefit of improving how I feel for a short time afterwards. Overall my running outside of work has been the reason I am able to work again. I do still take Propranolol LA 7.5mg BID which I make myself every week by splitting 60mg capsules to make them smaller into gel capsules I buy. The reason I do this is the regular propranolol wears off quickly so it would not last all night for me, the Propranolol LA lasts longer but does not come in small sizes.

Hope this helps.

Happy Thanksgiving,

[corina]

Thnaks for sharing POTLUCK and happy Thanksgiving to you too!

[Aeris5000]

It's been so hard, but I've managed to keep a full-time desk job since I got sick in August 2012. I wasn't diagnosed until I got the tilt table test in May of tnis year, so I went about 9 months with just 20 mg buspirone a day for the anxiety. By the time I got the dx, I had already exhausted my 12 weeks of FMLA, so my neurologist granted me 7 weeks short term disability. Getting that time paid for was a nightmare, though, and I only got paid for half the time. Since coming back full time on 8/19/13, I've only missed four days of work, which I'm really happy about. I feel sick every single day, but I manage it somehow.

Like Rebecca on the first page, I don't have a choice in working or not. My husband resigned from his job due to illness last year, before my POTS. Between looking for full time work, driving me to work, and taking care of me, I've had to support us financially. I'm blessed to work at one of the top POTS hospitals in the US, and I force myself to keep working. I just tell myself that I'm not going to faint, no matter how bad I feel. My coworkers have been pretty nice about the whole thing and my supervisor has been very supportive. But I still have to follow policy, and it can be stressful.

[Bigskyfam]

That's good to hear. I have to work to help support our Fam... Mine is in the back office on my feet 8 hrs a day. So I'm concerned. I've been off for a month. I'm at the point that I can go on short excursions... But need to sit. Did all lifestyle changes for past week... Holding off of meds as long as I can