Are you able to go to work with AD? How?

[ParrotPal]

Am quite new to AD.  Do most of you that have historically gone to work daily continue to do so, or have you had to stop working or switch jobs/careers, etc?  

I was doing a lot better a few weeks after the "big flare" and the main remaining symptoms are with the POTS/IST - but in the past two days, the intolerance to heat has come back and making me feel like am totally feverish and burning up, yet temp still in 97's (which is higher than normal for me), and mild chronic headache with fatigue is also back, along with uncooperative digestion again.  How does one maintain a career or job with AD?  I just think that forcing myself to "show up" while feeling sick all summer added to overall stress and exhaustion and feeling sick all the time, but smiling along the way to hide it at work, all just added to the "big flare" and put me over the edge.  I keep wondering how can I return if "this" is "it".  I'm on my feet a lot, running around inside a hospital, somedays to multiple places in and out of the car in the heat of Florida (where a car temp can be 140 when you get inside), and the ambient heat index ran between 105 and 110 the entire summer.  Even just walking from my car to the grocery or to the hospital filled me with so much heat, I couldn't get rid of the burning feeling for the entire day and night, until I would wake up in morning.  I try ice packs, eating ice, drinking cold liquids.  I don't sweat. Those remedies help while using them, but then back to burning.  Even when people touch my skin it feels like it is burning, but no perspiration, so no cooling, just more exhaustion and stress.

[vbc2000]

Thank you for those words of encouragement and for the blessings :)  I'm so glad you found a doctor that is going to be able to help.  It is really hard to deal with all this and live a life that is meaningful and not all about our illness.  Keep up the good work...I'll be trying too :)
Stephanie

[ParrotPal]

To Everyone that commented above.  Thank you so much for sharing your answers.  Each of you is truly a hero.  I just can't imagine how difficult it is to go on like that on a long term basis.  I have taken a leave since about 5 weeks ago or so.  I do not know when i can go back, as I spend most of my days on my feet moving around a hospital and talking with people, oftentimes standing still due to small cramped rooms with no places to sit.  Just the thought of the headaches, nausea, dizziness, wooziness, faint feeling makes me sick and frightened about the idea of returning just yet.   I saw an electro physiologist yesterday that knows a good deal about dysautonomia and sees a lot of POTS patients.  He explained to me about the kinds of meds that can treat it, but said in his mind the very best option is life style changes and reconditioning and retraining the physiology to deal with the POTS for a lifetime of positive effects vs. treating without making changes.  He said it is work and takes commitment and can take in the neighborhood of a year to make the difference.  Since I plan on living decades more and don't want to take yet more meds, I am going to work on the other and see how it goes.  it will be hard, but I have to try.  I know how hard it is to even think of adding more lifestyle changes and exercises to a schedule when one feels sick and exhausted all the time, especially if working and taking care of other family members.  So I can imagine that a lot of people can't do it and thank goodness for the meds that are available to help.  It is a conundrum in that one needs energy to to get better, but one has no energy to get better.  Maybe just a few minutes a day is better than nothing.  

I send out blessings and prayers for strength to you all.

[bluewind95]

I'm working now, but the schedule is killing me. I get to work at 7:30 am. And I sit in my desk (usually working) till 1pm. Then it's lunch time. I don't take the 2 hours we're allowed because I take the time with my boss and a coworker and they don't and... yeah. So by 2 or 2:30, I'm back at the office. And because it looks bd if I don't.... I'm generally working. And then, workworkwork till 6:30 when it's the minimum time we're allowed to leave. And I still get ugly looks sometimes because I leave "early" when the others stay longer (... they also arrive to the office several hours after I do...). And the schedule is so erratic... had to come last Saturday, and it was *17 hours* straight. I have not recovered my strength properly yet, and I even got a cold, what with the physical stress that was.

I find that, in my case, while it IS possible to half keep up with the pace, I am simply not working anywhere near my full capacity because I am too tired. Yesterday, what with the symptoms flaring (they seem to be getting worse the more tired I get), and with being sick with a cold, well, I went to the bathroom and promptly fell asleep. Today seems like it might be a day like that... And, really, I find that pushing your limits so hard only makes you miserable. Working is good, both for the body and the mind, but you do have to be mindful of your limits and not constantly push past them.

[Mom2four85]

I've fainted and had problems since age 9, had bouts off & on througout the years where I'm healthy then get extremely sick, but wasn't dx with anything until age 42; but have worked until last year.

In May - June 2009, I got extremely sick, had to have an ablation due to cardiac related stuff and my EP did a ttt and dx me with NCS/OI, and a mix of all kinds of things I wasn't dx with that made me so sick.  Neuro thinks autoimmune (SLE) is thrown in the mix but no positive ANA.

We have an Autistic son so I've pretty much worked at home in our pool business and had my own business so I can set my own hours for the past 10 years.  After June 2009 and my surgeries, I had to cut down my hours at our business to about 10 hours pay (only to pay for insurance) because my condition worsened and the meds made me worse to where I could barely sit up.

I was fainting even with meds and a pacemaker/icd and HR's in the 50's & 60's, malignant heart arrythmia's, NCS/OI, depression, heart damage where I could barely walk 10 ft without getting sick  SoB, CP's and SSI denied me.  

An attny told me if I got any income at all, even though SSI says you can work and make up to $1,000 mthly in 2010, I would be denied again.

[Marinella82]

I was having frequent episodes at work till my blood pressure was in check.  I even went to the ER 15 times this year because I kept fainting in public and at work.  I was put on midodrine about 3 months ago to raise my BP and ever since then i have not had another episode but I do have to check my BP about 3 times a day.  It's not a cure but it does seem to help me from fainting and getting dizzy.  I also take propranolol wich is a beta blocker.  I work 40 hours a week, 8 hours a day 5 days a week.   I am on my feet most of the time cause I work in retail management.  I have a note from my doctor that says I can work but may need breaks once and a while and must have fluids whenever I need them.  I am the only one allowed to have gatoraid or water at the desk and on the sales floor.  If I do have an episode I have a note that says that I have to take off 2-3 days off to get my energy back and feel better.

[vbc2000]

Hi There,
I work a 35 hour week and the only way I'm still able to is because my husband and I work at the same office, and he drives us to and from work.  He has more vacation time than me and when he has to take off and I can't, I never make it in the whole week.  I can't even drive myself :(  It's not that I get bad behind the wheel...that's never happened thank God, but the driving to and from, and working just depletes all my energy.  I am a secretary so I sit most of the day.  I can also regulate my business.  I can also retreat into my record room to rest and every lunch hour I'm in there - laying down...on the floor!  It really is the only way I make it thru the day.  If I have to go out to lunch or there's an office party...I'm drained.  It takes so little :(  Just getting ready in the morning is exhausting...and again, if I weren't able to recline on the way in while my husband drives, and rest thru the day and recline again when I come home...I would never be able to do it.

I would like to think this kind of suffering I go thru every day would convince SSI that I could not work, but I suspect they would say something like "well you do work" so I would never get it.  I would like it, but it seems like an insurmountable task to fight for it...and I don't have that in me...now anyway.

You work those long days right?  I don't know how you do it.  If you are having a bad day, please know I'll be thinking about you, hoping you make it thru.  I guess for now, we have to do it.  Maybe we will find a better treatment, or maybe we will be able to stay home one day.  I wouldn't even think of taking SSI if I really didn't think I needed it...but I think I need it.  I definintely can't afford not to work, so I kind of feel trapped.  I'm really thankful I have my husband to carry me sometimes.  Hang in there :)
Stephanie

[lilmissposey8088]

Hello. I was just diagnosed with POTS a month ago but have been dealing with it for about 10 years now I guess. It finally got to the point that I was no longer able to work or continue my nursing studies this summer. It is different for every single case though. Some of us on here continue to work. It really depends on how severe your case is. I am very orthostatic intollerant so I can't maintain working without real bad conseqeunces the next day or a couple days after.

I'm sorry you are going through this. It is a hard thing to live with and wrap your head around. It was the hardest thing for me to make the discission to quit nursing school with only one year left, but I am still hoping that with the right meds and diet that I can go back. You should listen to your body and make the decission for your self on what you can handle and what you can't. It's hard to accept not being able to work and I wish I still could.

The answers are never the same for one person to the next and what works for one doesn't always work for all with dysauto. So keep your head up and keep trying.