Working

[KristinL]

I have my master's in nursing. I finished my degree last May and by the end of August had a complete relapse and have not been able to work since. I had not worked for two years prior to graduating but thought I was feeling well enough to go back...but I was wrong. I am surprised how many health care providers have POTS and are unable to work. I still hold out hope that one day I will be able to return to part time work or even prn. I like many others love being a nurse and would love to be able to help others again.

[sandymbme]

I was working as a department manager of an upscale retail store when I first got sick. I LOVED my silly retail job, and was devastated when I had to leave it. But I just could not handle 50 hours a week on my feet. I had intermittent FMLA leave, but it wasn't fair to my staff or my employer to be so inconsistent with my attendance. So I got a desk job doing customer service type work in a call center for a bank. But since July of '09 I have only managed to work about three months. I have been on leave this time since May, and my short term disability leave expires November 5th. I am terrified of what the future will bring, because my employer is now saying my long-term disability insurance lapsed. (Like I would have EVER elected to stop that coverage!)I am terrified of what will happen if I lose my benefits. At this point, I can't say when, or if, I will ever work again...

Sandy

[sugartwin]

I totally agree with Dianne that it takes a high level of medical literacy to get a diagnosis. I was trained as a science/medical journalist, someone who reads journal articles with new science/medical findings and interprets them for a lay audience (a field that's all but dead thanks to cutbacks) and when my doctors drew a blank I started doing research on my own behalf.

The less a doctors knows, the less they let on to their patient. I had to rely on overhearing conversations between doctors to know that I needed to start with conditions that damaged/deranged the autonomic nervous system. From there I discovered POTS and from there, EDS.

I can work, in a sense. I'm a writer, so I write and submit articles and poems and what not. However, I certainly don't get anything like a regular paycheck though and cannot support myself.

[britishangel6]

I would love to work on my good days but the most difficult thing for me is that things change from hour to hour and i never know until the day that that day is good (if that makes sense-lol).Wish there was something i could do from home.

I worked in telephone triage for 3 years and would love to be able to do that from home but dont think its a possibility.x

I'm with you there, not know even hour-to-hour how I'll be. It drives me crazy not being able to predict my "health".

I believe you said you've been made redundant due to your health? I'm looking at telephone triage now. It's ashame that you can't continue that.

[comfortzone]

Another nurse for 24 years till I became unable to work at my nursing job end of 2008 because of my physical frailties. Yes it was partly my nature and partly my fearlessness in attacking the insurance issues, the doctor personalities and issues, my insatiable desire to know what was wrong so I could fix it ---- when doc after doc tried to sweep me under the rug. Quite frankly I would not let them. I look back at the calenders from those two years till now and doctor visits equalled a near full time job. Literally. Sometimes three appointments in one day alone. One appt. would lead to a dead end I'd press for the next. One might be semi-fruitful - I'd press for the next. And I'm STILL seeking more definitive answers two years later. I will not be done - well till I'm done or made to quit my research.

I would do this for each and every one of my patients as best I could. The less than desirable climate of management in some hospitals made it near impossible to advocate for patients for fear of stepping on someone's toes, or insulting someone, of being reprimanded for being insubordinate LOL.... you know it didn't matter. My patients were my patients and I'd do for them what I'd do for me -- if they desired my help.

So yes perhaps there is some truth in our doggedness to get the answers we need and we have the guts to do it. We know there are many fish in the sea as far as medical caregivers and what doesn't work for one person - may work well for the next -- but you have that sixth sense or nursing intuition to tell you if someone/something's smelling rotten - and sure enough when it comes to unusual cases - the rotten ones seem to be those with ego's unable to handle a simple "I Do Not Know" uttered from their lips. Bless the wise ones who admit such and weep with you at least.... The other danger of course the 'I know it all' when they've only just met their '1st' one in YOU.

Balancing listening with appropriate questions, teaching with learning, proven science with anecdotal victories - it's a juggling act to be sure.

I'm now looking for a desk job. My EDS is trumping my best cards lately....with one of my joint replacements acting up more than usual just two years after it was put in. Which I guess brings me to my chosen name LOL

Nowwhat!

[firewatcher]

I guess I get to buck this medical trend. I am a professional artist. I have free-lanced/run my own business since before college. Since I have always worked from home, I have been able to almost always control my hours and environment. I think that the physical differences that the researchers are finding in "artistic" brains with respect to neurotransmitter modulation helps me to be more functional with all this. While these differences probably predispose me to dysautonomia (many artists suffer from migraines and have a higher prevalence of Parkinson's) a lifetime of "dealing with it" has helped me to adjust to my worsening dysfunction.

[comfortzone]

I guess I get to buck this medical trend. I am a professional artist. I have free-lanced/run my own business since before college. Since I have always worked from home, I have been able to almost always control my hours and environment. I think that the physical differences that the researchers are finding in "artistic" brains with respect to neurotransmitter modulation helps me to be more functional with all this. While these differences probably predispose me to dysautonomia (many artists suffer from migraines and have a higher prevalence of Parkinson's) a lifetime of "dealing with it" has helped me to adjust to my worsening dysfunction.

Interesting - My Aunt is now in advanced age - but her entire life was life as an artist. She has Parkinson's - and is the only one of 6 sibs that does. It's getting quite bad I hear... But she's lived a good artist life in the Southwest - a perfect fit for her painting, writing lifestyle... She was always viewed as a bit fragile by nature as well. I hope to visit her sometime soon - an amazing lady.

I had to tell myself your quote - Of no such thing as chaos - only unperceived patterns - as I climb out of piles of cardboard boxes from my recent move and attempt to bring some order to it all....I just kept telling myself that --- lol --- that there was a bigger picture of a great 'order' emerging sometime soon. I'd love to say at two weeks it's all done - but not quite yet..... I wish I could accept that I just can't do what I used to do ... - but I am not there yet and will on occasion just have a mini meltdown and cry ... only for ten seconds or so - then quick suck it up! Life is too short to get frustrated on such little things

[jesse1919]

I'm an engineer at a big company. I got POTS overnight a year out of school. I was out of work 3 months until I got diagnosed. Luckily I didn't get fired. Then part time a few months until I started Midodrine. I've been full time 5 years now. I'm a zombie in my free time. Many weekends I don't leave the apartment and sometimes (like today) I have to say "thanks but I'm not going to make it" to my friends. My sleep is erratic and I ususally don't feel well in the morning (for 8 hours after I wake up) so I get in at 10, 11, 12 and we don't officially have flexible hours. So I get reminded of this occasionally. It's 5AM now, ugg. I'm not as productive as I used to be, just a little slower at everything. BUT I'm working, I have insurance and I'm doing well financially at least. Still I wish I could work less hours and try to have more fun. I hear people say all they do is work. They have NO idea.

[emadden514]

I work at a large financial services company. I take inbound phone calls. My company is great to work for and my boss has been very supportive. I was out of work for 27 weeks before going back 10/15/10. I started back at 20 hrs and I'm up to 32 now. I'm hoping to increase soon. The cooler weather and right med combo seems to be helping. I find myself very fortunate.

Elizabeth

[McBlonde]

I was in hospital administration just getting to the top of the career ladder when I got sick in 2000. Looking back, I know that I had symptoms prior to being knocked completely to not being able to get out of bed in 2001. Gradually, after moving to South Florida, I got better (at least not confined to bed. Being the Type A that I was, I thought I could just push through this and that if I could just go back to work, even at a lower level, I would (somehow) regain "myself".

That was the biggest mistake I made, both for my health and financially. I used every once of strength I had to work trying various much lower paid jobs at doctor's offices, recruiting, etc. It got to the point where I was so sick in the AM that I couldn't make it in before, 9:00, then 10:00, then 11:00. I stayed late and did my work, but I was nowhere near the A level I was in graduate school or as a hospital executive. Thankfully, the doctors I worked for helped me realize that I didn't need to be working. It was making me sicker and sicker. I applied for SSDI in February and was approved 5 weeks later. (Shock!)

The thing is, you are penalized for trying to work part time or at lower level jobs. To figure you benefit, they look at your last 10 years of employment and average those to figure your benefit due. I should have applied when I was bedridden in 2001. That was the top years of my earning power and my benefit would have been the max you can draw. Instead, what I did to myself by trying (and failing) to work was to lower my average salary earned. It made a difference of $500 less a month.

Even if I hadn't been approved at first in 2001, I could have appealed and continued to try to work failing at it.

My problem was that I looked at it as giving up. I shouldn't have done that because you can always try going back to work while drawing disability and see how it works out.

I hope this will help someone else. I am thinking especially of the long time nurses who can't work now and are struggling to work.

[comfortzone]

That was excellent of you to share your story - it just may help someone. Especially as in nursing - there are just a few states - California is one of them - where if you go out on a leave of absence because of illness or injury - the State of CA pays you half your salary (provided you've been working for a year or two at your job) - untaxed - so it can almost equal your normal pay -- for up to one year (if you worked enough hours the year before)... So you can hang in there and make your decision...am I going to need this entire year off to try to build up strength etc? Will I likely be much better at the end of the year...or not. Then if it looks like it's going to be a heck of a year and you feel like you are losing the battle = apply for SSDI right away ... don't even wait the entire year...so that hopefully you get approved just before your California employment disability (or one of the other four states) pay runs out. All SSDI is saying is that you believe you cannot work for an entire year ... once approved you can certainly try to work again - just as you say.... but your amount will be at a higher share because you went out - when you were making decent wages. And as you say - if your state doesn't have that benefit - then when you go out on leave because of being bedridden or hospitalized - you really need to size up the situation....are you housebound? If you are and things don't look real promising - time to get the ball rolling - all they can say is no. But appeals are an option - all the while you are still seeing doctors regularly anyway adding to your documentation as you try to figure out what it is that has you so sick or how to treat it best if you do know.

[McBlonde]

Exactly, Nowwhat! And.... the important thing is that the date you apply is the date that they will pay you back to if you have to go through an appeals process. For instance, if I had applied in March of 2003 and had been denied and appealed and denied and appealed and then approved in November 2005, SSDI would back pay you all the way to March 2003.

[carinara]

I work as a secretary. Having POTS for such a long time now i have found soooo many little helpers and tricks that get me through my workday. I stick to a strict routine concerning sleep, food and many other things. The good thing is, that i dont have to get up often and if i have to, it will only be for a few minutes. My sister and my partner also work at the same company that way i dont have to drive myself. I work 28 hours a week and in the afternoons i never make any plans to go somewhere because i need to rest and do little things around the house and be with my daughter.

I also have a secret hiding place at work in case i need to lay down for a little while. A while ago, i decited to

condition myself to the point where i try to see my office like my living room at home which means that if i get sick, i dont want to run away anymore i just want to stay there and lay down and wait until its better again.

[hilbiligrl]

Hi all. I was going to college full time, entering pharmacy school, working almost full time at CVS pharmacy as a pharmacy tech, plus I help(ed) my husband with his towing business. I could actually drive the trucks and recover wrecks and tow cars, etc... and could go around the clock...... but I always dealt with weakness, severe extreme fatigue and general all over sickness every day for many years..... I was handling it ok up until I had a bad episode in april 2009, I struggled to get through my incompleted classes at college, and after finishing that semester late, I never recovered. I had to quit work and school in october of 2009 and i've been bedridden since. I can now hardly take care of myself, or fix my own food, let alone take care of 2 middle schoolers or even help them with their homework. I can only manage to drive maybe 1 day a week now due to the severity. I have worked like crazy all my life and now I can't. I hate it. Hoping i can become stable in the next year or so to figure out the rest of my life. I guess we will see. Whats funny is im 33, and my husband is 56 and he has been treated for 6 years with congestive heart failure. Looks like we both may be on the same heart meds... lol.

hilbiligrl (tennille)

[Sarah4444]

I have been fighting with this since at least 1985. My mother is a doctor, and I had hoped to be one too, but I now realize I had my first episodes of severe orthostatic intolerance in my mid to late teens and then had to fight my way through university sick as well. I was able to get grades high enough to go on, but my body was alreading giving out. I managed to get a teaching degree and then an master's degree, but had to do the latter lying down on a lawnchair. I kept pushing myself for years, thinking at one point I would get better and then could pick up with a career. But having kids has been physically very challenging, and I have only managed to work 4 years part-time since graduating many years ago. I have been bedridden and unable to function this year (a little better now), but I wonder if pushing myself through things I was physically really struggling with has made me worse over time.

[Nela]

I definitely cannot work at this point. It's not necessarily that I do not want to, but it's just so discouraging. I've always been one to take pride in my work and I really hated feeling like i was letting people down. I absolutely hated the tension it caused with my employers and also the strain it put on co-workers. I never made it to a career and in a way I am grateful I didn't. I just had regular jobs like working in a shop or restaurant. Working in a place like Tim Hortons pretty much ruined me. I loved the job (surprisingly) but constantly being in this adrenaline rush really took a toll on my body. When I worked there, I never had a good day and it was really really hard to perform to my own satisfaction. In then end, it was my employer that got too concerned after a client noticed I had blue lips. My employer sat me down and saw that I was shaking and blue (though I had kept on working) and we had a good heart to heart. He didn't fire me, I simply quit. I knew that I couldn't do it anymore...

I got really lucky though as my boyfriend asked me to move to Holland to live with him around that same time. I'm here since May now and I have not worked since. I still have those days where I feel like I got run over by a truck. I never know when those days will be but the good thing is that I am at home. He works and I take care of the home. Luckily, he understands and is not pushing for me to return to work. Maybe, in the future, if things get better, I will try again. If not, I am perfectly happy with this arrangement. Plus, housework is not so easy! Hehehe.

[mountain girl]

I too work in nursing. I was an LPN supervisor at an assisted living where I still work, but now as a medication aide, so my responsibility is less, less stress and less money. I developed syptoms in June 2008, when I had decided to go from evening shift to night shift. I now work only day shifts and that seems to work best for me. I just worked about 8 weeks for the day shift suprvisor who was off for surgery. It gave me increased self confidence to see that I could do it, but I did have a tachycardia spell that was worse than usual after a busy day at work and it seems my hr has stayed up the last two weeks, so I wondered if that was my body's way of saying I was doing too much. Believe it or not, I think the combination of mental multi tasking and responsibility made some parts of the supervisor job more difficult than the med aide job. Yesterday I was back in the med aide job and did not feel as tired at the end of the day, although maybe I was just having a good day. When I was diagnosed, it was by a cardiologist whose nurse suggested it to him after testing. I did feel some drs I saw treated me with more respect because of being a nurse, but my pcp at the time and the er drs I saw in the beginning made me feel like there was nothing wrong with me but anxiety, which hurts. Yes anxiety goes along with pots, but it is more than just anxiety. Even though I make it through the day at work, it is difficult, and I feel like it takes me time to recover after working, like I am hungover tired I call it, but I am afraid to go through what it takes to get disability, I have heard that is very stressfulin itself, so for now I push myself to work, and trying to just do part time.

[autumn]

I work in the media, and my shifts have always been in the afternoons and evenings. I've had health problems for as long as I can remember, back to when I was little, so I've had plenty of time to figure out ways to make it through school and then work. My problems have definitely gotten worse over the years, but I'm so thankful I've never had to give up school or work. Right now, I have just enough energy to get through a workday. Because my shifts are later in the day, I can stay in bed fairly late and take my time getting ready, and I'm usually exhausted and in bed shortly after I get home. I'm not terribly productive in my free time right now.

[peregrine]

I'm a graduate student (currently on my fourth year, so I basically just work in a lab all day), so I have flexible hours which has been the main reason I can keep working. I haven't changed my hours per se, but have gotten a lot more proactive about clever scheduling and not attending seminars, etc.

[POTSMama]

I work tangential to the medical field - - I have a PhD in Audiology and have seen patients part time over the years, but also taught at the university level and worked in industry. I have found, to my annoyance, that I have to mention my PhD to get attention/respect from new MDs I go to with my symptoms (even if my Ph.D is in a field entirely unrelated). My PCP is great (he always treats his patients with respect), but when I went to the allergist, he tried to push me off as an "anxiety" ridden person (who wouldn't be anxious if they suddenly couldn't work or eat?). Then when he found out I had a Ph.D and was a researcher and I brought in some articles from the medical literature, a sudden change in attitude and he started taking me more seriously....Grrr, it shouldn't be that way. I wonder if a lot of the people on here are from the health field because we are more likely to want to research our problems and not just leave it up to the doctors, so we join discussion forums to learn more.

Carol

[ramakentesh]

Ive held a job in the finance sector for about 11 years. I was prettymuch well for the first two or three of these years, then out of the blue at 26 POTS arrived, ankylosing spond arrived, I felt tired all the time and things got tough. At this stage my position was fairly relaxed, i worked with good people, one of whom was sicker than I was so they were quite cool with what ever quirk I needed.

But the main thing was now that I realise i wasnt that sick or because I was younger I could cope ok. I would eat licorice, drinking lots of gatorade and if I felt poorly I would take a day off without a second thought (I purchased extra leave).

i tried medications - florinef made me feel super anxious - others either did nothing or made me worse. So i stuck with licorice which worked for me.

that was before my most recent relapse in 2008. Since then Ive just struggled the whole time. I was so sick that if I went to a meeting between 1-2pm I would literally have to lie down or run out of the room as I was so out of it and fighting to remain conscious that there was no purpose in me being there. I took a fair amount of leave but looking back I should have taken a lot more.

My problem was I got transferred and promoted into an area that were far less relaxed and who looked on my sick leave requests with suspicion. Even with doc reports and even after fainting a few times in front of people I got that feeling. But it was also because I was so sick with POTS and AS i wasnt thinking clearly and i was overly concerned about keeping the job and pay the bills like a normal person. So I struggled through spending all of the day, then less of the day then just an hour or so a day trying not to faint. This is sitting down too - not walking around. I simply could not ever do a walking around all day job. I can walk all day around my home no problem for some reason, but twenty minutes in a shopping centre is a scary thought LOL.

I exercised hard since this relapse and over time for what ever reason I have improved although relapses have been occuring. I also took chinese herbs at time that seemed to calm me down (i think the herb is actually a beta blocker). From Jan to Oct this year I was playing in my band again, working fulltime, running extra training sessions and running 5 kms three times a week.

I have trouble with stress now days and my work is highly stressful even for well people so I wouldnt say I enjoy it. But being a male I want to provide for my family and I always feel depressed about the possibility that one day this condition may stop me from being able to do that. If only I could win lotto LOL!

One thing for sure is that I have become a much better saver. the constant wondering about what thefuture holds has turned me from being a bad spender into a saver. ive also become a person who doesnt really relax. I just come home and recover knowing full well the next i may wake up ok or wake up like death.

I get frustrated with doctors because they tend to just spin you a line about accepting it or about my relapse being because I didnt exercise hard enough ( i ran 5kms the night before it came on).

[aunie]

I also worked as an ER triage technician for eight years. I finally couldn't handle the long shifts, even only doing it 2-3 days a week. The last two years I tried working in an office, but even that became too much. I have been home for 15 months and it doesn't look like I will be going back anytime soon. I wish I could find something I could do from home, I need something for myself, I just don't know what yet.

[kmichaelson]

I just submitted my letter of resignation for my full-time job today. I've been struggling for about a year to hang on to my job (with FMLA, adjusted schedule, etc.), but once my FMLA ran out, I haven't been able to go back full-time. I've been feeling like a lot of people in this thread described, like I'm giving up by quitting my job. I come from a family of workaholics who define themselves by their jobs, so I think I've had an extra hard time coming to terms with giving up my work--it feels like I'm giving up a huge chunk of my life and my self-worth. Also, I really liked my job and love the people I worked with, but at this time I am barely able to do a few hours of work a day, let alone 9 hours a day, 5 days a week.

I feel incredibly sad right now about having quit, but I also think it will be a relief once I get past the sadness because it's been a great deal of stress trying to do what I've needed to get done at work and feeling like I'm letting people down by not being there. Hopefully I'm leaving on good enough terms that if I recover one day enough, I could go back to work in this field somehow (at least I hope), so I'm trying to look at this as what I need to do NOW rather than the end of my life, which is what it sometimes feels like! (sad laugh) I'm also hopeful that I can do a bit of work from home--not nearly the same hours or pay, but at least it's something.

I suppose I should also look at applying for disability, but I really know so little about it I don't even know where to begin. At least I know there are some resources on this site I can look at.

[ramakentesh]

I come from a family of workaholics who define themselves by their jobs

Im the same. My father worked 50 hours a week for most of his life and I never heard him once complain. So I feel in some strange way kind of ashamed that my body is holding me back from at least working 40 hours a week.

[E246]

I have been a free lance artist all my working career - in tv, theatre and even had a three year residency in 3 hospitals. Then did a post grad in Fine Art and a few years ago set up a company with a younger male sculptor designing natural play areas and landscapes. Thank goodness i did this as my earlier work was very hands on and i could never do this now. I would be active all day, on my feet, and then running another business with my husband outside of this.

My episodes of illness crept up on me slowly i think for years but mostly over the last 2 years.

I used to work on site and i am physically very strong and would barrow stuff around, mix concrete and lay turf.

Since this hit me full on Nov 2010 i have moved more and more to the designing and running the business as it has expanded and we have taken on 3 more people. I used to be able to do all the meetings but i hit a flare 6 weeks ago and have not been able to leave the office- which is still in my house. We have a workshop which has an office but i am too ill to set it up there. My daughter in law works with me and i know she would like to be with the others at the workshops but i have often needed someone with me especially when i get prolonged surges and tachycardia.

I fel really lucky we started this as my partner is brilliant and wants me in even if i can only work erratically. He knows I am a workaholic and that if i say i am too ill to do something then there really is something wrong.

I really, really do not want to let go of what is the culmination of so much work and passion. Still struggling to believe that i won't be better tomorrow.

Often when i am working i can just forget i am ill and sometimes when i just ignore my symptoms they do pass. I just can't imagine why i would stop as has been suggested and just do nothing so for now i am going to keep on going.

I agree with a previous post - i use my status as a successful post grad business woman with medical family and friends to counter suggestions that i am over anxious and over reacting. it is ridiculous but true.