Attempting to work AND POTS

[MaryJo]

I am feeling a bit despondent at the moment, and I often feel guilty that I have been unable to work due to POTS/EDS. I have a good academic record (albeit I had to take time out to complete), and sometimes I get cross with myself and think that if only I could try harder then I would have made it. I am quite severely affected by POTS and EDS which causes many dislocations/subluxes each day, but the main thing that hinders my ability to work is the terrible fatigue.

As I was never able to work, I have got to the stage where I am unsure if I am now just putting obstacles in my own path. However, I wondered if anyone else felt guilty and as if they were just trying to make excuses for themselves. I can't understand it because i have never been lazy and still push myself hard, and with the medical diagnoses, but there you are.

MAybe it occurs, to some extent because most of us have taken a long time to get diagnosed and therefore may have experienced lack of belief to the extent that we now think we are imagining being ill.

Thanks for any comments.

Love

MaryJo

[nantynannie]

Hi Mary Jo,

I feel very guilty that I am not working. I feel lazy and worthless. Just when I think to myself, "Why aren't you working?" (this is usually in the afternoon, in the airconditioning, and only for a short time) I remember that I had a hard time just getting out of bed and moving downstairs to the couch this morning. Still, in those moments when I am able to get out of the house or enjoy myself for a bit, I feel guilty that I am not working anymore. I forget that I will have to pay for those moments for days afterwards and there is no employer on earth who will put up with that type of attendance. Still, I don't think the guilt is avoidable. I am not sure, but I know that you are not alone!

Ann

[Poohbear]

Hi Mary Jo!

I have NCS and POTS and have been diagnosed for close to 9-10 years now. Initially medication helped me, then that stopped working and I got worse, that was six years ago and I had to stop working. I was out of work for about 8 months. I was given a pacemaker and improved enough to gradually return to work. Eventually (actually considering everything it was a relatively short period) I was able to return to work at 100% capacity. I still had a lot of fatigue, I still had my struggles and my job schedule was highly flexible which was a must but I managed. I moved and took a better job and worked for nearly 4 years. Again, the type of job I had was highly flexible and I was a representative in one state and my boss was in another. I was a very good, trustworthy employee...I always got my work done but some days I would have to cancel my appts and double book on a day I felt better. I would cram in the paperwork however I could get it done. So I worked really crazy hours and I had no energy for anything else. My life was 100% work; that's all I could do. Then about 20 months ago things got worse and I held on as long as I could to my job but I finally got to where I couldn't do it.

It has been very hard for me. I actually loved my job (though at times it was frustrating). I didn't realize how much of my self worth and self esteem were wrapped up into my job until I became unable to work. Though I miss it a lot and cry some days over it I also know I can't work right now. I have good days and I've even had some weeks where I thought "With the increased activity I had this week I think I could try to work again" and then, without fail, I will crash for at least a solid week if not more. So, I know my body can't tolerate it.

I do feel guilty and it is stressful for me not to work but I also see where physically I'm slightly improved not trying to work.

I guess my advice to you would be if you are really unsure and you think you want to try working contact the local vocational rehab office and see if they are able to assist you. They can help you in various ways and if you try to work and can't, then you will know you did your best.

Good luck! You are not alone!

[MightyMouse]

MJ, I sure to empathize with how you're feeling. While I'm still able to work, it's a constant struggle. I worry that as I get a bit older, working as I do now will be an impossibility. The joint pains and pops from EDS can be very frustrating.

I'm always telling my doctor how much I would like to do this or that which I no longer am able (like hiking, adventure vacations, high impact aerobics like running), and that my brain and motivation are there but my body just wont play along nicely!

I get mad at myself sometimes too--wanting to push on, but again, when my body fails to comply, I become utterly frustrated and downright mad at myself. My spouse always knows when I get cranky, that I'm not intentionally directing anger outward, it's spilling out from being so mad inwardly at the limitations. I have to be careful because it can be come a nasty cycle where my spirit gets crushed in the process.

I have to force myself to think about the things that I can do, the blessings I do have, the people in my life who make my load a bit lighter or even a LOT lighter, etc.

When we speak of the rollercoaster this disorder presents, it's more than just a physical thing, it's an emotional and spiritual thing too... I try to ride out the lows as I know there's an upswing somewhere ahead; albiet sometimes hard to envision.

Nina

[Dawg Tired]

I certainly understand how you feel. I had to quit work after a 9 month struggle and finally grinding myself down to the point I went in one day and only managed to sit upright for 2 hours. It was to the point I was either in bed or at work and that was all I could manage. I couldn't even manage to come home after work and sit in a chair to eat. The fatigue took over my life. It will be 3 years in September since the last time I set foot in my workplace. I have days of feeling guilty about not being a person who contributes to mankind even though I had worked steadily since I was 14. I am now 46, so I had worked and paid Social Security for 30 years. But I still felt guilty. I am better now since I do a few things at church but it isn't the same. I don't mean to be a downer. My sisters point out that our great grandmother had the same problems I do and she was always just considered to be in "delicate health". That used to be acceptable; for some reason it seems that now society views those things differently. I wish I had an answer; I didn't want to accept my limitations for a long time and my co-workers would find me in a heap on the floor. At least I was working with a group of nurses and once we figured out what was going on they knew what to do.

Last summer I decided to "help out humanity" and volunteer to be a nurse for a 5 day summer church camp. I spent the week on the couch. No matter how much denial I want to be in - my body will betray me! So, yes, I do sometimes feel guilty for not being able to work. But I am learning to deal.

[Ernie]

Hi,

I don't feel guilty for not being able to work anymore. I am angry at the medical community for not taking care of cases like me (and us) and trying to help us better. If I would have been diagnosed in my younger years I would not be disabled today. I would exchange my pension check anyday to have my health back and go to work.

Ernie

[ethansmom]

I have struggled with guilt over not working since the beginning. I was a new college student at age 19 when I got sick, and had only been working for about 2 years when I was forced to quit. I have not held a full time job since then, although I was able to work part time when pregnant with my first son. That's the only time...once I became a Mom that became my job, and now with two kids I couldn't even consider working because the child care would eat us alive

I sell on e-Bay here and there just to help out, but overall I feel really bad that my partner has had to compensate all this time. We have had some struggles especially lately, so I really hope that one day this illness will allow me to return to work at least part time. I am going to midwifery school next year and after my program is complete and my older son starts school, I am going to try to be a part time midwife- it's a stretch but it's what I really want to do and I refuse to let POTS get in the way of that at this point. I am stubborn and it has taken so much away from me.

I think all of us can relate to your struggles and feelings- it's great thaqt we can come here and talk about it!!

[Sunfish]

Until this past year, I'd been able to work...sort of. In 2002 there were a good 5-6 months when I couldn't attend classes, spent a month in the hospital, & had to quit my part-time jobs, but somehow I managed to crank out enough papers on my laptop to stay in school; if I'd been in the "real world" of work at the time I would have been out of work for certain. Since starting work in June 2002 after graduation it's been a very up & down sort of thing. I'm thankful to have been able to work but for the first year or so I pretty much couldn't do anything else. And I had to lay down during my lunch hour under my desk in order to make it through the day. I was determined to make it work & don't regret doing so, but am at a different place now in terms of realizing my limitations. I spent 6 weeks on leave in 2003 when I had neck surgery but the big kicker came this year. After trying to get back to work after I was hospitalized in November, I've been out on LTD since being in the hospital over new years. I know that I couldn't not be working in my full-time, not flexible office setting now. I was too sick until about a month ago to even think much about it, but now that I'm able to try to do a few things out & about - even if it means with a wheelchair - the whole thing is playing mind games with me more in terms of the guilt factor. Like if I have a decent day I'll think "could I have worked today?" And the reality is that perhaps I could now...for a day. And for that I'm super thankful. But it would be for a day & then I'd be back in bed. I will say that being on LTD has probably helped my mentality....the fact that my not working is "approved" helps me realize that I can't be working right now. I know that there are plenty of folks unable to work who don't have any benefits & my heart goes out to you all, but it's just helped me a bit in terms of my mindset/ reassuring myself. I'm hoping to try for school in the fall b/c it will be a lot less confined than my work environment. I can go to a few classes & do actual work while laying down. But even this is scary as I have no clue how it's going to go. My mom would be much happier if I were to wait another year, hoping I'll be better, but we don't know that...objectively speaking, there's just as good a chance that I'll be worse, so personally I have to at least give the school thing a shot. But it's scary. And it is hard to know how far to push. In terms of work and so much else. And if being "able" to work means that there can be absolutely nothing else in one's life that seems pretty rotten to me too...no matter how great a job. My ramblings are now only sort of tied in to the original question, but yes...I've struggled with the guilt thing. I ran into someone from my office the other day when I was at the mall - in a wheelchair - and afterward my mind was playing horrible games with me in terms of "what must they think that i'm at the mall but can't work"? Of course objectively I know that an hour at the mall in a wheelchair is not the same as full-time work, but I can easily get going down that path if I allow myself to.

and now the ramblings will stop before I get even further from where I began....

:-)melissa

[DancingLight]

boy, this series of posts really spoke to me, and i just spent a bunch of dinner time discussing my feelings on this topic with my mom...

our society puts so much emphasis on the work stuff. there is no question i dread more than 'what do you do???' ugh. i have been known to turn the other way and pretend that i don't see someone to avoid this confrontation.

i feel a lot like all of you and esp. what sunfish and nina said. i have a HUGE spirit and passion for life, and a body that won't cooperate. if will power could make us better, we would all be living illness free lives by now! that is for sure.

i also feel a TREMENDOUS amount of guilt over not working. and not only not working, but not contribute to keeping the house running. my poor mom. she is still taking care of me at age 29 like she had to when i was a little kid. she's a professor and it's just the two of us in the house. i hate watching how hard she works. i hate that i cannot have dinner on the table for her for a treat.

and, i feel your pain when you talk about feeling guilty for enjoying yourselves. i think it's like i don't feel entitled to pleasure activities b/c i don't 'work'.

but, i DO work, in the best sense that i can. i get up every day, get compressed, get dressed, and give this life the best i can. i give every day a shot. and that is all i can do right now. it has to be enough. but it never feels like enough.

aaaaaaaaaaarrrrrrrrrrrrrrrrrggggggggggggggghhhhhhhhhhhhhhhhh....

i'm 29 and have never worked b/c i got sick right out of college...

anyway, at this point, i'm not sure that i even care if i ever work or not. that may sound weird. but it's more about reality. i think i'm gonna have a long struggle with POTS. if i can work, i have so many passions, i'll find something, i know that.

right now, my full-time job is healing as much as i can. and giving back here when i can. this site gives me sense of usefulness, but i wish i could contribute more.

i want more than anything to simply have some quality of life and be independent enough to get my own meals, maybe go to the grocery etc...heck, to leave the house! if more comes my way, like working, i'll find my way and cherish it. but i'm not holding my breath.

well, i'm going to go sit outside in the fresh air, and try not to feel guilty...yeah right! my mom's runnng around the house and i'm being a bum. that's not the reality, but that's how i feel! so, i hear you all!

and, sunfish, i sooooo hear you on what other people think. they are always like, oh, you look soooo good. ha! i'm pasty white. and they cannot figure out why i'm at home b/c i go for little walks to the corner.

okay, that was a serious vent.

this topic is so close to home. and now, i'm afriad i sound lazy b/c i have let go of the 'work' thing. but, that's not how i meant it...i just am soooo far away from that reality right now, that it's too much heartbreak to go there...i gotta take it one step at a time.

later alligators!

emily

[Sunfish]

em -

first, you do NOT sound lazy. you articulated where you are very well & i think it's along the lines of hopeful realism rather than blind hope which can, as many of us well know, end up more frustrating than anything.

second, i just HAD to respond to your strategy of ducking the other way to avoid the "what do you do" question. i hate it. b/c, like you said, there is A LOT we do. in all honesty we do more to a degree at times. i know i've had to work harder to a degree this year...to stay hydrated, out of the hospital (sort of), conscious, sane, etc....than any "work" i was doing while still working. if only i had the gumption to REALLY answer that question when someone asks. the answer would be....well, i take this many pills to be able to stand up & remain conscious, then i make my way to the bathroom and catheterize myself....wouldn't that floor them. hehe.

i have a shirt from swim team in high school that says on the back "the body achieves what the mind believes." poppycock. positive thinking is definitely part of things, but if it were the only thing i'd be training for an ironman!

:-)melissa

[Dawg Tired]

What do I do?? I do medical research!

[Poohbear]

I can relate to all of this!

To add to what Dawg Tired said about "What do you do?" Medical Research

You could all also add "I'm a support for people who are dealing with Dysautonomia and related concerns"

We may not have "work" but we all have a purpose and meaning in this life (though I know sometimes we don't feel or believe this) and we still do work....it just may be that it's not the kind we financially benefit from.

Poohbear

Later Alligators

After While Crocidiles

Hope it's soon Baboons.....just had to say this for Emily!!!

[becky]

Hi mary jo,

I don't work either and i do feel guilty, but that's more because it's so difficult to explain to people how tired and dizzy i feel all the time, i still think that other people will think i'm making it up!

i haven't worked for a year now - i've had pots for three- i was working at a gym in the admin department but they sacked me because i kept passing out and i did'nt have a diagnosis for what was happening to me, my fiancee and i had just bought our first house, it was a nightmare, my last day in work i managed 10 minutes before i passed out over my computer!!

I've just started a part time i.t. course because i couldn't stand being in the house on my "well" days, i thought that as i hadn't passed out for four months and apart from some quite bad vertigo i'd be fine, we are now five weeks into the course and i have managed about 10 days - i've passed out twice in college so far but they are cool about it so i don't let it stress me, if it takes five years i'm going to finish this course.

i think at one point i stopped believing in me and started listening to the doctors who said i was mad and thats where i got my guilt from, i don't feel as guilty now, if i could do anything about it i would so whats the point in worrying?

sorry this turned into a bit of a rant, i always forget what my original point was.

i think it was, just take it easy, listen to your body, if you do become well enough to work again you will, don't stress and don't push yourself, cos your body will punish you for it later on.

take care and feel good

becky x x x

[purplefocus]

Hi everyone. I was just considering this morning of calling around for interviews for a job.........and I came in here and seen all that ya had written. I haven't worked now for almost 2 years, I still have daily symptoms but I feel so guilty not helping out more than just my disability check. I miss so much being a nurse that I think (mind over matter) that I can make myself better to where I can tolerate it. I really don't even know where to start......I want to work back in nursing, but I don't feel it would be safe for my patients so I am just at a lost right now.......plus the argument with my husband, his concern that I will just cause more problems than I already have. I''m sure most of you are understanding what I am saying. This disease is so frustrating. Mary Jo, I also think sometimes am I just being lazy. I know I worked my butt off for 20 years so why would I get lazy now? I guess because I often don't look sick on the outside then people look at me like.....what's wrong with you. Seems like alot of us can relate.

purplefocus

[Brwneyedchica]

I've been working fulltime for awhile now, but I don't know how much longer I can do it. I feel awful everyday, so exhausted, nauseated and dizzy, it's all that I can do to get through the day. It's much worse lately, i've had awful abdominal pain, they think I have an ulcer. I'm at the point where I barely function now, I go to work and that is it. It takes all of my energy to just wash clothes and pack my lunch for work. I will be 22 years old next month and I just don't know what to do. I'm very seriously considering quitting my job, selling my car and begging for financial help from family. I just don't feel able to work anymore. I feel awful, like i'm a quitter, but I don't think I can keep up with the physical strain this is putting on me. I thought about taking medical transcription classes and trying to work from home, but i'm just so exhausted that I don't even think I could manage that right now.

[Dawg Tired]

By the time I quit I was either 1) in bed or 2) at work. I was not able to drive myself to work the last 6 weeks or so. My employer had put a recliner in my cubie! My co-workers would find me on the floor... I had no business even being there but they were really trying.