[Jirel]

I know I've seen a lot of questions about this but I THINK I'm asking it slightly differently.

Did you work until you felt like you were dying before you quit or did you quit because it made you feel bad - tired, etc all the time?

Do you think it is better to quit before things get so bad?

This is totally leaving out all the problems that comes with quitting work (ie going on disability) such as the lack of income for up to 3 years before they approve, etc.

Ever since I was on short term disability for 10 weeks, I can't get the idea of quitting out of my mind. And yet part of me says I'm being rediculous and lazy because I'm not "dying". I'm just tired a lot have problems concentrated and very frustrated and TIRED. I don't have organ involved Lupus, I know i'm very lucky and not nearly as sick as I could be. But how do I decided when to quit? I have no family, so there's no one real close to talk to about it. I have friends, but they just truely don't understand.

Feel free to say that yes, I'm being lazy. That's what I keep telling myself after all. I don't want people trying to make me feel better, I want honest opinions.

 

[Katharine]

Hi Jirel,

Yes your queston is slightly different but it is one I have often looked back on. I definitely worked until I felt I just couldn't go one step furhter. Looking back, I really don't know how I got through those last few months. I should definitely have stopped much earlier. The docs thought so too but I was still attached to the idea that financially it wasn't an option.

Well, it became a necessity and the finances just had to make do!
I think I definitely made things worse and it took me a long time to "get over" having pushed myself so far.

And yet, I'm sure I didn't push half as far as some do. For a start Belgians have this very good work/life balance thing. Not many here think work is more important than life. On top of that, because I had started having seriously low blood pressure (and had written my car off because of it ), I did actually reduce my work time quite a bit. First of all to four days, then three.
It helped with the blood pressure but not much else.

The thing is that everyone's experience is different. Some may stabilise after a while and may be able to resume their work, some may not.

The difficult bit is that you can't "plan" life. I remember asking the rheumy about it sometime last year and I was grateful she was so honest. She said "forget the next six months at least" which meant I could organise life with my clients etc.

I have just started "working" again - If one can call it that. I am still self-employed and have decided to ONLY do my translation work from home. That allows me huge flexibility. I felt rotten last week but got in four straight hours of writing on Saturday evening from 8.30 pm to 12.30am. It works for me. Or rather, it works healthwise - financially we have no idea yet wheteher there'll be enough work to make it worthwhile financially.

If it isn't worthwhile it will be a blow but we both know that we'll work it out somehow. Life comes first.

I sometimes feel that maybe I have truly become lazy. I am reassured by how I feel on the odd "good" day, or a few weeks back when I had three good weeks. Suddenly I'm not lazy any more! I'm beginning to understand that if I don't "feel like" doing it, it basically means I am not up to doing it and should rest. I am not lazy and I sincerely doubt you are either.

hope that helps a bit

Katharine

 

[Christine UK]

I was dx in 78 and worked until 97 when i simply couldnt find an employer who would adjust to my illness !!

No really they could see how even the simpiliest of tasks were a massive effort for me....so we said enough is enough..

the financial implications of course go with it....but we didnt ask for this illness...but we are in everyday life and situation penalised for having Lupus etc....

sorry i am rabbling...nothing new there then !

 

[sadieone]

My job became too stressful to handle with all the customers and management of employees. Traveling too and from work with road rage and long hours six days a week.

Finally i couldn't take any more,,, even when i tried my own business at my pace. There was an issue of having to get up when i was to tired too or flaring. So it all came to and end.

Now i'm at home all day rashening my chores out so i don't get too exhausted. Vaccuum one part of the house one day,, the other parts on other days,, mop when my back does not feel broken and dishes are an every day twice a day thing especially when i cook and i love to cook.

Like they say,, everyone is different.. Some times i think i might be able to handle a little job where i am behind a register or something. But i don't think it would be worth the getting up early with a days work already of showering and dressing on some occasions.

I can barely do things around my house that need to be done. When i think of that i have to stop fantisizing about a job.

Good luck
Take care

 

[Maia]

I worked until I had gotten so sick, so often and was just plain so tired and hurting that I physically could not do it anymore. I even had to leave my daughter in daycare for nearly a full month because I was unable to care for her. Had costochondritis so bad that I could not lift her and she was just 1.5 at the time...

Looking back, I should have quit before I did. It's easy to say that now, having gotten LTD approved and reapproved after the 2 year mark. I remember how scary it was leaving work and being gone for over 3 months in one year which meant I was going to lose my job no matter what. The uncertainty is very difficult to deal with, but it should be relatively short lived. I haven't heard of it taking more than 6 months at least.

If you are still feeling like you can work, then you probably can. But if you are feeling like I am too sick to do this, and wondering how you can put one foot in front of the other and be at work all day and then coming home and doing nothing and letting everything else go, then it very well may be time to seriously consider applying for LTD. Especially if your work is also not as "good" as it was before...

Get your ducks in a row, investigate how LTD works in your case (for instance I was surprised mine would continue to donate what I used to donate into my 401K), because knowledge of how it all should work is a good thing to know whether you end up needing to apply or not.

 

[Salopsally]

Hi Jirel,
Im worrying about the same problem. At present im self employed at home and can do my work around my illness and stamina. I feel lazy because I need to rest and sleep a lot.
Because of recent government legislation and lack of funds I may have to give up this self employment. Im worrying how I would hold down a normal type job working for someone else.
I dont have organ involvement either but struggle with joint pain.. muscle weakness and extreme fatigue.
It seems its near impossible to get any disability payment if you can still dress yourself and get up out of bed on your own. I have had a time when I couldnt do even that but was told I couldnt get disibility payment if it would not last more than 6 months.
I dont know the answer either but I know in the past I have worked myself to death nearly and its probably what caused me to flare so badly with this.
Some days it seems hard to keep going but what option is there when you dont have a partner to support you and maybe help to look after you.
Hope you find some solution from posing this question.
If you dont need to though dont push yourself so hard that you go into another serious flare.
Good luck with whatever you decide to do. Im sure we are not lazy but I know how you feel.

All the best.
Sal x

 

[Jenkay]

My response would be similar to Katherine's, I worked as long as I could and tried working from home for my company but finally gave in when I realized I couldn't get the job done. My body was just shutting down on a regular basis so it came to a point where I didn't have a choice. Those around me saw it coming well before I would admit it as I'm pretty young.

When I couldn't get in 10 hours a week that was a clue. If you feel you can still work some maybe modified hours would work?? It is a tough and life changing situation. I wish you the best.

 

[BigSis]

Hi There,
I empathise completely.
I had five months off work last year. I should have gone off sick much sooner than I did too.

It's hard:sad: On a good day you tend to think it is all ok and you're being lazy for considering cutting back..then comes the inevitable bad times when you can't even think at all, let alone make a decision!
I am beginning to think that nothing is worth the worsening of our health but it is a decision you can only make yourself.

good luck.

 

[Luscinda]

(((Jirel)))

I perfectly understand your situation. In my case, after being sick with lupus for 10-12 years I was finally diagnosed in 2004. I was on short term disability for 6 months and afterwards I felt physically and mentally unable to go back to work, so my husband and I decided that it was best for me to stay at home and not to work and risk getting unwell again. I receive no benefits at all, my husband supports me financially.

Now, four years on, I´m planning to start working part-time form home on a freelance basis. I´ve noticed what is "normal" for other people (working, commuting,long-hour days etc.) to me becomes a nightmare due to the lupus, but I´m not willing to sacrifice my health as lupus is to stay here forever.

Having said all that, I really admire all of you who work as "nomal" people do. Many times I´ve wondered why it is not possible for me, but I guess it is just something I have to accept.

BTW, I totally agree with BigSis.

 

[Jirel]

Well, I have up to 72 hours available to be off on "lupus related" illnesses until Jan 1st of 2009. If I go past that (unless I'm using my vacation days, which I've already done a couple of times) I will be fired. (this is because of the 10 weeks used during Nov and Dec of last year) - it ended on Jan 1st 2008. And if I'm fired I feel I will be forced to do disability. Meanwhile, I have long term disability insurnace via work that is based on my income. So if I cut my hours, I'm cutting the amount of money I will wind up living on once I go on disability. (Not to mention that work has said they don't have a part-time position available.)

Round and round the thoughts go, no where to stop and nothing decided.

 

[Karly1964]

My case is a bit different although I can relate

When I was working, I worked at a K-Mart store stocking shelves at night on the third shift while the store was closed and then very early in the morning. I had just finished college but had episodes of deep depression throughout the the last two years of school and they were getting progressively worse after I graduated. I also had several other mental illnesses as well as fibromyalgia in 1991 when I finally started calling in sick and not coming in to work on my days scheduled. With everything going on I just felt like I couldn't do it anymore. Finally one day I admitted myself into the hospital for suicidal thoughts and stayed in for two weeks. When I got out I went back to work for one week and I nearly and literally went out of my mind. At the end of that week I went back into the hospital and called the personel manager and told her I was quiting. Of course all I had to do was worry about me and I didn't have a family or a bunch of bills to worry about, I just quit without giving any thought to that. I was in and out of different hospitals and a group home for the next two years until I finally ended up in a psychiatric hospital in Indianapolis to be diagnosed because my psych. doctor knew I had more than major depression. While I was in that hospital the social worker applied for disability for me and I got it in 1993. Before that I had tried to go back to work but was so anxious and freaked out I couldn't perform the simplist tasks. Basically I worked until I couldn't take it anymore, and now of course I have all the physical diagnosis as well as the psychlogical ones, though in general those have improved somewhat over the past fifteen years. I still have difficulties with the emotional side of things but I would say right now the physical issues are weighing heavily on me now. I don't know if that helped at all but, I went on and on until I felt driven to quit. Karly

 

[Jirel]

I suspect it's the depression that is driving me more than anything on this. I'm up to 2 wellbutrin and 2 paxils a day but still find myself showing the signs. I had to see a therapist last year and she was one of the first to suggest disability.

 

[Douglas]

I finally took early retirement and the big hit ot the pension when my wife pointed out that she figured if I continued to work I would be dead very soon. Since she is right about 99.99265% of the time, I pulled the plug. Better alive in pain and penury at home than planted in a cemetery.
Douglas+

 

[jo191070]

work

I have to travel and hour each way to work, I ahve been off for two weeks as I work in a school, I had a major flare up which lasted four days last week, I am having a mini flare up this week, the though of going back to work next week is killing me, I love my job, I don't think we could manage finacially if I gave up work!!!

 

[Jirel]

Just a comment before I dash off to a work-related class that lasts all day.... I"m doing much better all of a sudden. The Rheumy had wanted me to try Lyrica because of stabing pains in my toes and biting like pain in my ankles. Well the first day I hit 3 pills a day - Sunday (the full dose) I woke up feeling GOOD!!!! So far (fingers crossed) I've kept that feeling. Its such a relief!