Working Or Not....generally Not A Choice

[Sunfish]

i've greatly debated whether or not to post this as it's something i've mentioned/ written in the midst of some past discussions & it has at times been met with some unhappy responses. it's something i need to do though & i'm hoping that by posting it separately it will be more benign in that it will be a general statement & not directed at any one person. i do NOT mean it to be directed to anyone individually but rather as a general FYI to anyone who may not realize how certain phrases/ statements may come across to others in slightly different situations than themselves. so with that mess of a disclaimer ....

as someone who is no longer able to work it is very painful for me to continuously read/ hear references on the forum to those who "don't have a choice but to work", "must work", etc. while i do NOT want to minimize the difficult position of those who are pushing beyond pushing to keep working despite health struggles, the phrases that are used often imply that those of us not working made a CHOICE to do so. in reality, at least for some of us, that couldn't be further from the truth. and since the forum is supposed to be a place for support from others who "get it" i had to say something b/c i'm 100% sure that no one means to be hurtful. while i realize that some people's financial situation may allow them to stop working more easily &/or take some time off with hopes of improving health, etc, this is NOT the case for everyone not working. some of us who are not working aren't working b/c it is IMPOSSIBLE. not hard. not terribly difficult. not painful or exhausting or anything else that comes with working despite illness. simply impossible b/c we are way too ill. finances &/or anything else doesn't factor in to the extent that if it meant we would end up in a cardboard box on the street with no clothes, food, or health care we STILL wouldn't be able to work.

again i am NOT minimizing the difficulties of working with illness &/or the frustration of wishing one was in a situation that would allow for a different choice. i have been in the position of working when i was in pretty rough shape health-wise, when working meant i could do little else (including taking care of my apartment, fixing myself meals, having any social life, being able to attend church, etc), & when i pushed to get to the office when i "shouldn't" have....throwing up between meetings, lying down under my desk or in my car to make it through the day, using any/ all time off for health-related craziness, etc. it was VERY difficult. and yet i was still light years better then health-wise then than i am now & would love to be at that place again. being FORCED to stop working is horrible & something that a good number of people on the forum have had to face, regardless of circumstances/ finances. for most having to stop work is entirely about declining health rather than in any way related to the financial ability to not work. needing to work to support one's self &/or one's family doesn't make a bit of difference if it is physically impossible for someone to work.

so...while my heart does go out to those struggling to work (i have been there & it is INCREDIBLY DIFFICULT), PLEASE don't think that those of us not working are in our current situation out of choice as that's simply not true for the majority of people. many (if not most) of us have had to give up a LOT b/c of our inability to work b/c it was a reality thrust upon us by our ill health rather than something we were able to choose as a convenience. people have lost homes, cars, health care, financial independence, etc. while it is true that i was/am luckier than many in that i had/ have (minimal) long term disability insurance from my former employer, i wouldn't have been able to work one hour longer even if i would have ended up living on the side of the road. there may be a select few on the forum who were/ are able to easily take some time off "for their health" by choice; in an ideal world there would be some sort of medical leave program so that this would be available to everyone, as well as a cushion so that no one would have to worry about bare essentials if health makes working impossible (though that's another topic for another day, & may come close to crossing the line into discussion of political topics.)

this doesn't mean that the forum can't be a place for people doing their darndest to keep working to vent about those difficulties....it can be, should be, & is, as that is a VERY tough place to be. but for myself & others who have had to give up that part of our life, either for a period of time or for forever, references to "not having the luxury to stop working," "having no choice but to work" and similar such things can really hurt b/c, for us, being FORCED to stop working was & is far from a choice, a convenience or a luxury.

thanks for hearing me out & trying to understand another perspective. i hope & pray that it's one you will never have to live yourself, & thank you for bearing with my post, one which is far from one of my most articulate &/or organized! i wouldn't have posted if this situation was something that was specific to only me and it is NOT directed toward any individual(s) so i FORBID anyone from feeling badly about anything that might have been written in previous posts. my intent was/ is simply to give "the other side of the story" as i'm pretty sure that i'm not the only one who has cringed &/or gotten a bit weepy when posts in any way imply that my not working is/ was in any way related to choice.

hugs to all - working or not - as either situation downright stinks when it's being dictated by an uncooperative body,

melissa

[JaneEyre9]

A great point! It goes along with the whole "if you try hard enough, you can do anything" routine. It's just not always the case. There are real physical barriers in life that simply cannot be overcome by sheer will, and when you want to do something very badly, and are physically prohibited from doing it, the last thing you want to hear (implied or otherwise) is that you must not "want it enough." Which incidentally reminds me of the Hillary/Palin SNL skit where the Palin character says that anyone can be president if they want it badly enough, and the Hillary character starts laughing and saying sarcastically "Oh yeah, I must not have wanted it enough!" and rips off a piece of the podium in frustration. haha.

Melissa, just a personal note to you that if there is one person in the world who could overcome an obstacle by utter determination and perseverance, I'd have to say that person is you. You're an inspiration to me in what you can do, considering what your body has thrown at you. Your presence on this board is a testament to how hard you work just to survive and, in the process, make life better for other people while you're here.

[firewatcher]

Melissa, you are working...just not being paid anywhere near enough. You moderate this forum, you go on everyday with an incredibly positive attitude, you inspire so many of us. To make the best of any difficult situation is work and yours is Herculean effort. I applaud you, I admire you and I appreciate you! This is NOT pity, it is heartfelt thanks for your part in making this forum possible and sharing your experiences with us. There are a few, treasured times when I have heard "well done!"

Melissa, "very, very well done!"

[Ernie]

Hi Melissa,

I am completely with you and feel the same way. I admire you for standing up and posting it.

I have no choice but to work myself and kept passing out on my clients. I had to stop working because nobody likes to see a therapist who passes out on them! I had no choice but to cut on my spending and I lost a lot of financial privileges. If it would only be a matter of will, I would also continue to work but my body just does not want to follow my wishes.

[flop]

Melissa,

thank you for sharing your feelings on this topic. As you said I'm sure no-one ever meant to be disrespectful or cause deliberate hurt or insult but it is so easy to focus on our own personal situation and inadvertantly upset others. (That is one of the reasons that moderating this forum is such an important job that you do so well - to minimise any potential hurt or upset to other members).

I am someone that most people would think of as having "chosen to stop working", certainly most of my family see it that way. Perhaps the fact that so many of us try so hard to portray the "I'm coping" and "everything is fine" exterior image actually gives the wrong impression? When people ask me how I'm doing my usual reply is "I'm fine thanks" because I know the question wasn't really a question but a polite greeting and that most people really don't want to know the true answer.

Everyone's situation is unique and I'm not explaining mine to try to get sympathy or to try to compare myself to Melissa's situation as I am light years away from facing the difficulties that she copes with on an hour-by-hour basis. Until a few months ago I worked long hours in a job with a lot of responsibilities and high-pressure deadlines. Ever since I became ill with POTS I have struggled to stay in work. At the age of 25 I was advised to take early retirement on the grounds of ill health - would have been a financial disaster for me (at that stage the "I will succeed" mentality helped me through). During my battle to stay in work I was sacked "on health grounds" - fought and got my job back, faced continual discrimination from senior managers and collegues, was subject to multiple "disciplinary hearings", for issues that were purely due to my health impacting on my work, not for any reasons that I should have been "disciplined" for.

Over the years my family doctor supported me through these battles, mopped up my tears when I had to resign from a hard-fought-for promotion. I have had times where my employers actually had to employ an extra person to do my job for me (with me limping along beside them) in the hope that my health would improve and I could "get back to normal". My doctor always said to me that since my teens I had always had hurdles placed in front of me and that I had always jumped over them, the next hurdle being higher and more difficult to clear than the last. It was he who after supporting me through so much said "Flop, this is one hurdle too many and too high - you have to give in, the more you fight to work the iller you are getting, enough is enough!". My supervisor at work basically said the same thing - over a 6 month period of working with her (in a post that was much "easier" than my previous post) she had noticed that my productivity, happiness and health had plummeted. She said that the work I was doing was admirable but I had got to a situation where I was coping less and less with my job and needing more and more time off sick. The days I was later and later getting to work due to struggling to physically drag myself out of bed, the times I was asleep on the floor, in my car or even whilst sat in board meetings, my deteriorating appearance as washing my hair and ironing clothes became impossible on a regular basis, the number of times that secretaries and collegues has to rescue me as I was unconscious in my office or the toilets or even the car park. Eventually there comes a point where no matter how much you want to work it is obvious that will-power and determination can't overcome illness and disability. I gave in and stopped working just 4 months ago. Knowing how I am now and how simple daily living leaves me exhausted and in bed for hours/days I don't know how I managed to keep working for as long as I did. BUT I KNOW IT WASN'T A CHOICE TO STOP WORKING, had I been an osterich any longer I would have been sacked for being ill and not physically capable of doing my job. Disability discrimination laws can help people stay in work and get reasonable accommodations but struggling to turn up and not doing any profitable work are not "reasonable accommodations".

My situation is vastly different to Melissa's, I am constantly searching and hoping for the right treatment to control my symptoms rather than to simply stay alive. I'm hopeful that I will one day return to work. Unless I get dramatically better I can't see my body ever letting me push it into doing the job I was doing but I hope that in the future there is a part-time job out there that can utilise my skills without making my health worse.

DINET is here to support everyone, from people working full time, people working part-time, people at home with kids, people on sick-leave, people out of work at the moment and people who are permanently incapacitated. Let us stand together as although our struggles are different, we are all fighting together to be one step ahead of where we are now or to avoid falling off that step!

Flop

[MomtoGiuliana]

Thank you Melissa for sharing this. It is very important for all of us to understand and remember that dysautonomia is a spectrum of disorders with a spectrum of severity. I agree with you that, while many of us do use this forum as a very needed venting outlet, we also all need to be aware that patients using this forum range from people highly recovered to people gravely afflicted --we are not all even remotely the same in what we face physically.

I have been unable to work due to POTS as well, for months only--and I realize how very fortunate I am. I also still remember how disabled I was at that time (though nothing compared to what you and others are going through) so I understand, through my experience, that this condition can be severe enough that working or not working is not a choice, even if it meant as you say, living in a cardboard box on the street.

I also think as you point out that there is a certain point along the severity spectrum where it is borderline whether someone can work or not. I think people at that point can be distraught for many reasons--and their personal economic situation can make things even more difficult. As there is a spectrum of severity, there is also an economic spectrum for our group. Some of us have spouses or other family who can fully support us economically with little economic hardship, for others it is not as easy economically to leave a paid job/the work force. It is people at this point on the severity and economic spectrum, I think, who understandably, feel terrified, alone and some jealousy of others who they perceive may not have economic challenges to the extent that they do.

Finally, I agree with what others have said -- you have incredible drive and determination in the face of challenges few of us can even begin to imagine -- and furthermore, you ARE working. What you give to DINET is a significant contribution to others that is highly valued.

[iheartcats]

I think it's very hard, and very scary. I know what you're saying about being forced to quit work. I can honestly say I don't know what I'd do if it came to that. I really don't, and just try to go day to day and not think about it.

After reading this I think this is why my 'bad downturns' scare me so much - is it a short-term thing? Are things getting worse when they were getting better? It's because I really need to work and I'm doing the best I can to keep going. It has meant giving up a lot (activities, leisure time, have to break up my cleaning into 'tolerable' chunks and even hope I can get that done, going out with friends, etc). Work takes most of my energy. And as you all know, because many of you who can no longer work, probably went through the stage where it takes a lot to keep working and you lose friendships, family doesn't understand, etc.

I just try to accept sometimes life at least gives you a choice. And I've had to take the choice to work but give up other areas. I try to remind myself while I'm not feeling great and it's not optimal, at least I'm able to work mostly full-time. I couldn't have a high-pressure job, I couldn't have a job more than 40 hours a week, so that limits opportunities and promotions. It sounds like all of you understand that - I hoped to do more in my career, but I just can't right now. I have to be fortunate for what I have.

FMLA helps when you are borderline...able to work but not able to do lots of other things...I have it as a cushion for when I need to take a day off, go to doctors, etc.

And before FMLA, I've had to use all my vacation for health reasons. That's hard. And even more so when co-workers think you are out having 'fun' and taking extra time...and we're so not!

After reading these posts I'm going to try to be more positive and thankful I can get to work most days. You can't take things for granted and I've been focusing too much on the things I can no longer do.....but if work has to be my choice of what I can do, I should be thankful I even have the choice right now.

[bjt22]

Thanks.

Its a touchy topic. I can't work, either. In fact, I can't manage my family and my household without help. For better or worse, we live in a society that values stoicism to an inordinate degree. Don't get me wrong...I'm often as guilty as the next person in that regard, and in the back of my mind, I often have those "but if I just tried HARDER" thoughts lurking about.

[Maxine]

Sunfish, I fully understand your post, and I really appreciate you posting about this subject.

Not being able to work anymore was devestating, and it still took me over a year an a half to decide weather I was making the right choice, because there were days I could function better, and other days when I couldn't get out of bed, or my function level was really low.

I finally filed for SSDI in 2004. I crashed hard with POTs while still working in Dec. of 2000. I ended up developing further complications due to the EDS and spine instability, and it was impossible to predict how I would feel, not only daily, but from hour to hour. I was finally approved for disability in July 2007. The medical expert at the hearing based my disability more on my EDs then the POTS, and said my prognosis was poor. In one sense it was good because I knew I would be approved for benefits, but on the other hand it was sobering to hear my prognosis was poor. I'm still in denial on that one.

Maxine :0)

[pat57]

I hear you! I think that's what we are all looking for someone to HEAR us. I appreciate your thoughtfull and gentle approach...........

[samannran]

I apologize for the phrase "don't have a choice but to work." Of course, I know that giving up working is extremely hard. My husband lost his job when a factory closed in our area, and he's still unemployed. I am the main breadwinner right now until I am forced to quit driving. We have a child, and we're also helping support my disabled father. That's the only thing I meant by that phrase. I know many others are in the same position. I've been reading posts for two years now and occasionally post something. I will go back to just reading because I, by no means, wanted to hurt anyone or make anyone cry by something I inadvertently posted. That makes me feel awful. Once again, I'm sorry.

God bless all of you. May they find a cure soon!

[corina]

melissa, thank you for sharing this. i too cannot work anymore but i have always wanted to be able to get my job back. and not just my job, it seems that i have been wanting and wanting and wanting and trying to fight myself back into a life i can't live anymore. and that is what i've learned in rehab in the last 5 months. i am now (most of the time) able to stop wanting all these impossible things. i can concentrate on just living, doing the things i still can, trying to do a bit more (i'll always do that as that is just me) but now i can see my possibillities AND impossibillities. it makes life easier for me as it brings a kind of peace.

i think i understand what you mean, although i'm by far not in your position. but i do know that you are such a loving and caring person not wanting to hurt anyone by bringing this up. i admire your courage melissa and thank you for all your precious time that you are here to help others.

sending you a big hug from across the northssea via england and across the atlantic to you in the us

love,

corina

[Sophia3]

Melissa

AMEN! to your post. I get so tired of reading posts that we just need to THINK POSITIVE and we can work throught POTS. after SS for 18 years, not working full time since 1990 and not even part time since 1999 (Gee, I LOOK HEALTHY) Or people who say we just need to be stubborn and not give up.....sigh... I gave up all independence YEARS ago and lost my apartment in 2002 (VERY DIFFICULT I LOVED LIVING ALONE !!)

While no where near the state you are in, I shower once a week (sponge bathe in between) I leave the house on days I can for an hour at most.

To listen to a band that plays gigs once or twice a month, close to me I REST all day in bed and set timers for a few meds and hydrate to just GET OUT for 2-3 hrs but no guarantee. But it's music therapy and often I pay for it for DAYS! But where else can I "Travel" in my mind while listening to Nola music (New Orleans style) I have not traveled in since 1992 except for a drive to see Dr. Grubb once...so I can CERTAINLY ONLY imagine the stuff YOU have been through Melissa....and it was good seeing a post from you.

Oh, and I am one that spends 90 percent of my waking hours reclined or lying supine to cope with laundry a few times a month, putting on make up..or just little things folks take for granted. I cook a few days a month when cooking used to be my PASSION but PASSION does not win over gravity for many.

THANK YOU for addressing this issue because as you said, it CAN come off as insulting to think we can TRUDGE through this illness if we just put our minds to it.

Sorry...did not mean to hijack and make this about me...just wanted you to know I APPRECIATED this post.

xoxo

[juliegee]

Oh sweet Melissa-

Point well taken!!!! You are most definately heard. I remember when my son, at age 12, had to officially drop out of school. the equivalent of your work. He'd formerly been a class leader, straight A student, etc. and he was reduced to measures similiar to those you describe. I had to awaken him several times in the night to take meds (that interacted with other meds) so he couldn't even get good sleep. He vomited the whole way to school, between classes, etc. He had to lean against the car for 15 minutes, once we arrived, just to ensure he wouldn't faint so he could walk in. He'd lost so much weight I was afraid he would die. It was so heartbreaking to see how valiantly he fought to do his job and YOU fought too. When he dropped out, we cried and cried as I'm sure you did when you finally had to leave work. His doctors didn't even have a name for what was afflicting him.

I understand your fight from a caretaker's perspective and you have my utter respect, admiration, and gratitude for all you do for us. As Rachel said, YOU most definately do work. Your work has given my son a better life. YOU gave his affliction a name, resources, etc. Without this forum (and other similiar ones) we might still be seeking a DX and treatment plan. By sharing your story, knowledge, etc; you've helped more of us than you'll ever know. I've personally witnessed YOU potentially saving lives here by sharing your experiences with sepsis, etc.

The tricky thing about this forum is that this disease is so variable. Some of us do improve and others don't. We represent a huge spectrum of affliction, from mild to fighting to stay alive. No one person's experience will apply to everyone. I benefit so much from everyone's sharing.

Thank you for reminding us, Melissa, that not all of us will improve...that not all of us chose not to "work". God made that choice for you. Keep reminding us of your reality, Sunfish.

With Love-

Julie

[Angelika_23]

Melissa, as always, your posts are very thought out and eloquent. I always enjoy reading them. I thought I might jump in here from the "other" side, if you will.

I am a working mother of three. I am having an extremely hard time with my illness right now. I am on the verge of losing my job due to my inability to be there when I am supposed to be there. I can "choose" to resign, or I can be passive and be let go. There is a choice there for me. Not a choice I like. Either one ends the same way. But I do get to choose the way it goes. So when some of us post about choosing, maybe people should step back and really read what we are saying. Some people (including me at times) feel they DON'T have any choice but to work, and that is looking at it from their own specific circumstances. They haven't "gotten there" yet, where they must give in. They are choosing to still fight. Good for them that they still can. This should not be taken as a reflection that they feel others have simply chosen to quit their jobs because they want to.

I would hate to think that I can't vent about my particular situation on here without hurting someone else's feelings in some obscure way. If we are going to have to start watching every single word we type, this isn't going to be a very honest or supportive setting for the people who aren't totally incapacitated.

Thanks,

Angela

[vemee]

I still feel guilty not working but the only jobs that I am now qualified for after 13 year in the fire department are non skilled labor job, which of course involve a lot of standing or long periods of sitting. At my social security hearing the judge asked the occupational specialist if it were realistic that someone would hire me, let me work for an hour or two and then lie down until ready to go again; she said no and the judge agreed with her. However, when I have a good day or even a good string of days the guilt comes roaring in and I feel like I'm better so I ought to get a job. That is unrealistic of course.

[mkoven]

Don't think I have too much to add. I've had times when I was unable to work for up to a year. Now I am able to again, but only because my work is so flexible.

I think people's benefits (disability, health insurance) vary so much, so that it's very different for each of us what will happen when and if we can't work. Without getting into a political discussion, but since not everyone here is from the US, and those of us in the US often forget how patchy our social benefits can be, compared to other places, the consequence of not being able to work can hit people quite differently. It's such a touchy issue, as work can turn into a moral-seeming issue. But for people who can't work anymore, and I really get that this happens beyond people's control, the social and economic safety net may also just not be there, and that is terrifying. I'm lucky to have good benefits and a healthy spouse, but that is my good fortune. I don't mean that being too sick is under our control at all. It's just for people who haven't yet had to stop working, the consequnces of not working can be more catastrophic than for others. Maybe there could be a separate post about how to get various types of disability support, access to social workers to arrange in-home care, etc. When I think about what I would do if I had to stop working again, if I didn't have my husband and his social and financial input, it is truly terrifying, and I wouldn't know where to begin, especially if I felt too lousy to do all the footwork, and no one else could do it for me...

[EarthMother]

Yes, I agree a post on the ins and outs of our disability options and personal experiences would be a wonderful idea. I personally find myself in that unimaginable place of not being able to work any longer and with the stock market crash and our retirement savings disappearing before my eyes the prospects ARE indeed truly terrifying.

Ok, so maybe I'll start that post!

[Ernie]

Hi,

My personal opinion is that when someone says: 'I have no choice but to work' they mean that they have financial obligations and still have the physical and mental capacity to work even if they have to make some sacrifices (ie cutting down on social life, etc.).

If our health deteriorates too much then there comes a time when 'I have no choice but to work' has to be reassessed and the person has to accept to loose financial benefits and many non financial benefits. Most of the time our health declines slowly, as opposed to someone who has a car accident and is made disabled overnight. So for some time, maybe years we can push our body, but for some of us the invevitable is there right in front of us one day or another. Even after years of not being able to work we still feel guilty because our society values our worth or identity on our job or accomplishment. So it's a touchy subject for those of us who would to love to work, earn money and have a life or have their life back.

[Sophia3]

the bottom line it depends WHERE one is in this illness and if it's PROGRESSIVE.

From 1985 I had horrible Chronic fatigue issues blamed on chronic adult mono (which may or may not be bogus...we have ALL been exposed to Epstein- barr)

i worked odd job hours in offices for YEARS to get lots of sleep.

NO INSOMNIA in those days but needed a good 8-10 hrs sleep TO WORK 8 hr days.

In late 80's cut back social life...got a 9-5 job and the fatigue/insomnia started getting HUGE again..and after quitting a full time job in 1990...never went back...did 10 hours a week of evening jobs until 98 or 99 and some research from home that was VERY easy..until a few years ago.

Now between HORRIBLE cognitive impairment, FATIGUE and UPRIGHT issues...sitting does not help me..lying supine is the only cure.

So if you can be upright,active social life and work part time, one DOEs still have a choice much like i did in the 80's but "i had to work around the situation".

I would never choose to live at less than half the poverty level for ONE PERSON.

NOT a choice. then again. daily showering is not a choice either...some days spongebathing is too much...today i did not get out of my jammies...this happens 3 days at a time.

So if one is already pretty disabled in how they dress, clean up, that kind of deal, that's different than just PUSHING and being tired. That's how I was in a good part of the 80's.

So there are many "Variations on a Theme here"...those struggling and able to push..and those that can NOT push.

Once you get to the can't push except on rare days a month, THEN on truly gets the difference.

I can still remember working split shifts in an exercise club in the 80's and NAPPING in between.

Now I can NOT sleep and lately been awake until 5.30 am...that's a whole nother madness.

Years ago somebody did a study and said THOSE that can fall asleep fine have better chances of controlling this illness. Between insomnia and alpha-delta sleep issues, the fatigue progresses when you go around PERPETUALLY SLEEP DEPRIVED

off soapbox.

[Angelika_23]

I agree with Ernie's statement above on this. That statement seems to be tied to people who DO have the ability to push through for the time being. I am at the end of that, I am about done pushing. It is not helping me, it is hurting me.

No one chooses (at least, in their right mind) to live below poverty. None of us chose to have this illness. The choices I was talking about was how we dealt with what we had. That we do have itty bitty choices in things, even if they aren't the choices we'd like to have. I'd like to choose to not be in so much pain lately. I'd like to choose to be able to do stuff with my kids. I'd like to choose to dance again on a regular basis. But those aren't the choices I have at this time.

Right now I can choose how I deal with my feelings. I can choose how I treat other people. I can choose what to watch on TV. These are things I can control, except maybe the TV if my husband is around!

So I guess I'll take what I can get.

Angela

[morgan617]

I haven't been here too much lately. Broken bones, dead computers, etc, but I really need to reply to this post.

I started working at age 13. I have been sick my entire life. When I was in nursing school, I went to school 8-10 hours a day and worked 12 hour shifts on the week ends as a waitress. Since my teens, I have said working was so hard for me, but I didn't have any choice. My first husband was brutal about it and then I had to support myself after my divorce. Since my second marriage, we have always struggled financially. I just got up, did what I had to and nothing else. My family suffered for it, but we needed the income.

I told my doctor continually I just didn't know how much longer I could do it. He just kind of stopped listening, like everyone else. And then one day, I went from a 14 hour day to disability. I may as well have hit a wall going 100 miles an hour. I was just done. As much as I complained for years and years, it never actually occured to me that I really wouldn't work till I was 67. Not in a million years. I look back now and wonder how I ever did it. How many mistakes I may have made I will never know about and the ones I will never forget due to an illness no one believed I had.

We lost our house this summer. We managed to short sale it rather than foreclosure, but we still lost it. Our lawyer is filing our bankruptcy papers Wednesday. We are not having Christmas this year. If I had the choice, would this be our life? God NO. My husband is over 50 and works up to 70 hours a week, but between my son and I, our medical bills have killed us. I know you are similar in age to Jake, Melissa, and I see his frustration at the fact that all his friends have moved on, have lives, have babies, or significant others and he's stuck in some fricken time warp he can't get out of. Is this what he chose? Of course not.

My point here is, when you can't work anymore, you can't. It doesn't matter that your entire world is falling off the face of the earth and you may end up living in your Dodge Neon, praying the heater doesn't break.

I have to say, at times, I am a bit jealous of the people who talk about their jobs. I do know how hard it is. The last couple of years I changed 5-6 times trying to find one I could actually do and failing at every one. The last day I worked? Should have been an 8 hour day, it just took me 14.

I would be thrilled to be a greeter in a store like home depot at this point. I am sitting here in my power chair, looking at my commode chair, as I type this, thinking...how did this happen and why am I not in bed sleeping because I have to get up and go to work tomorrow?????

Through my jealousy, I am happy some of you are still able to work, and I hope you are never in the position many of the rest of us are. Since I hardly know anyone on here anymore, I can't possibly be aiming this at anyone, so I hope no one takes this personally, it is not meant for anyone to do that.

But I do understand how you and others feel Melissa. I go to doctors appointments and for tests, period. So for those of you who just don't know how much longer you can do it, my advice is to appreciate the fact you still can, as hard as it is. Trust me, being home bound, losing all your friends, and possessions has been far worse than forcing myself to get my butt up and go to work ever was. I would do anything to work again, so be careful what you wish for.

My heart goes out to anyone who ever felt like I did working, because, trust me, I know how really hard it was. But when that choice is ripped from you without you getting to make the decision, my heart will break for you then too. This is definitely a rock and a hard place, our lives, whether we are living to work, or working to live, or just existing in some void having no idea what's coming next.

Sometimes I feel sorry for some people who think it can't get worse, because trust me on this one too, it ALWAYS can. I also realize that this is a sensitive subject and there are going to be people who think this is directed at them, or there may hurt feelings, but we are adults and these are the realities of our lives. No one really healthy would be wasting their time on here, unless they were a troll, but trolls don't last here, so everyone understands that we are all in bad places, but bad places is a relative term. I don't work and haven't since March 18, 2003. I will never work again. But I wish like anything I could say, "I just don't know how much longer I can do this", and then get up go to a job. morgan

[MelissaCrystal]

When you're one of those people who can barely stand to get out of bed, but can't qualify for disability, it's really unfair to tell them to stop wishing for disability, don't you think? I think this is really unfair. What if you, being definitely disabled in your own eyes, didn't qualify for disability for some reason? What if a doctor said "well, you can be a telecommuter, you've got your voice, so you can work from home." There are a lot of suffering people out there who are poor and have children to feed that wish they could qualify for disability because every day they feel like they are dying. I know that there are people who are suffering from worse, but it's just like saying what we're going through doesn't compare to those people in Africa. I hate statements like that. Everything is relative for -everyone-, and not everyone shares your view. I personally empathize with the people who wish they didn't have to work.

I don't think it's fair to tell one kind of person to stop wishing for a better life for themselves just because another person doesn't like the fact that they didn't have control over their life change. For some people, not working IS a luxury. Not all disabled people are bitter about that, and I'm very sorry that you are. My dad is disabled and he is a very unhappy man, so I do understand. But I also know many other disabled people who enjoy their lives and are glad they never have to suffer through working again.

This post isn't just directed at the original poster but some of the replies, because some of the statements were unfair to the non-disabled & suffering. I hope it doesn't offend anyone, but I just don't want people to feel guilty for sharing what they really want. We don't need to start a war between disabled and non-disabled just because either side is jealous of the other. It's silly to even talk about it. We are all mature, caring people here, and no one group needs to be singled out just because other suspects a phrase might have double-meaning.

I understand that when you can no longer work, it means you simply can't work. But there are many people who are fired from jobs over and over because of their health problems, and who pass out and are in and out of the hospital because they continue to try and work. They can't work, but they have to, there is no choice for them either. I know that it may be the same exact case for people who aren't working, because life itself is work, but just think about it. Their lives would be better if they had a day to recover where they didn't have to worry about losing another job and being broke, risk being homeless, etc. It shouldn't make us feel guilty to wish out loud for these things, especially on these forums.

[mkoven]

It feels like this topic has taken an unproductive turn. I think that's why I posted earlier that perhaps we should address the MATERIAL conditions that have enabled people to stop working, if and when they have to. Some people do not have access to the benefits or social support, or don't know how to get that access, and could literally end up on the street--sick and unable to function-- but on the street nonetheless. I believe everyone on here is doing the best they can with the resources they have--whether it's health or other. It's awful that dysautnomia can rob us of so much--some of us more than others, and sometimes our levels of functioning can take unexpected turns for the worse. But it feels like people are getting jabbed in this discussion. I would be more interested in hearing how 1) for those who can no longer work, how you've managed to get the financial, social, and medical help you need, so that you didn't end up on the street; 2) for those who still can, how you've managed to arrange your life to spare the strength you still have. I think people at all levels of funcitoning should be able to see dinet as one of our resources. I really believe that no one has intended to diss anyone else here, but it feels a little tlike this is spiralling.

[morgan617]

If my response made ANYONE feel dissed or offended, I am truly sorry. I did state that it might be taken in a way it was not meant to be taken. I believe that most of us on this site are very disabled, whether we work or not. I personally know what it was like to be let go and to have to change jobs, try to raise kids, try to make ends meet and decide whether to pay bills or feed my kids. I know the feeling of thinking I can't get through one more hour of work, let alone one more day, and God forbid, years.

I am one of very few people who got disability on my first try and feel like it was a miracle I did. It seems 99% of you have to fight for years for it, and what the heck do you do in the mean time? We went deeply into debt, borrowed from my sister and went without, however, it was for six months, not 5 years. My heart goes out to everyone on this site. My brain does not work as well as it should and I apparently set off people I don't know, and whose situations I don't know personally. But my guess is, I have been where you are.

As I said, my husband works a million hours a week. Some don't have spouses or significant others to help, so I know how lucky I am in that regard. If something, God forbid, happened to him tomorrow, my son and I would be on the street, period. As I stated we lost our house and are signing bankruptcy papers tomorrow, so I am guessing I am not a good one to be telling people how to get by when you just can't work any more.

Jake did get what's called GAU money from the state, but it's 200 dollars a month. He does qualify for 100 in food stamps and does get medicaid. However, I know if he didn't have his dad's insurance as his primary, he wouldn't be seeing the doctors he has to. This would be absolutely useless to him if he didn't have us. They say there are many programs out there for people like us, but I have yet to find any and I think most of us, including the ones working are pay check to paycheck, and need the insurance, and certainly the income.

My perspective is that of someone who became less and less able to work and finally just couldn't. Some of us are there, some not quite there yet, but maybe headed that way, and some on the very slippery slope.

I thought I had read every post and didn't find them to be awfully negative and the two posts since mine indicate a downward turn or the judgement of others. Which would, it appears, point to my post. I can assure you, I am not in a position to judge, just state how this has affected me. I used to wish every second that I didn't have to work anymore. That's what I meant by be careful what you wish for, because my life has certainly not improved because I don't work anymore. It has, in fact, gotten worse. Therefore, I don't have any good suggestions for people, as much as I would like to.

What I may have assumed, is that what has happened to me must happen to everyone and maybe it does and maybe it doesn't. Regardless, I don't envy the people who suffer through every second of work like I did, although my post apparently suggested that. I do know, that as sick as I was when I was working, I did not have foreclosures and bankruptcy looming over my head and that's what I was trying to say. Not be grateful that you feel like crappola and still get to work, just that sometimes it can get even worse if you don't. But those of you still working when you shouldn't have to be, already know this, or you wouldn't be. I think the reality is, it's like our illness, different for everyone. For some, their lives would be much improved if they could quit, for others it wouldn't make a huge difference, or it could just get worse.

Hopefully the people that do know me on here, know that I never come on here with any intent of hurting anyone in any way. I am an overly sensitive person in my own right and try to take great care not to hurt others, but that apparently did not come across in my post.

I don't think of myself as being bitter at my life anymore, I feel I am mostly resigned to it. That isn't much better than bitter, but being resigned takes less energy than being bitter and angry, so it's all I can muster. I wish there was a magic formula for all of us.

So, again, if my post has set off a lot of people, I apologize. I won't apologize for wishing I could still work, but I do apologize if I made people angry because I don't and wish I could, and they wish they didn't have to, but do. Every time my hubs has to wipe my butt, I really wish I could work again, and think of the irony of all the times I wished like anything I didn't have to. And that is where my perspective comes from. The same as some and far different than others. Like our illnesses. morgan