When is it time to let work go?

[Sunshyne]

So I'm 50 and have worked forever.

Now it seems I spend most of my time hoping that I'll be able to make it there. The stress and anxiety surrounding that short 5 mile trip is overwhelming.

I've had commutes of up to 60 miles and did it without a thought. But now I'm hoping I'll have the strength to get out of bed.

The husband doesn't get it...thinks I'm being lazy or that I just want to be home.

Am I the only one in this house who understands how hard this has been?

When I feel good, then I'm at work...when I have bad days, then I'm home feeling miserable. Is it too much to ask to have some of those few 'good feeling' days at home? Cleaning, seeing my grand daughter, or getting out of this house on the good days?

I've so had it. And I've had it hoping that people who know me would see that I am not the same. I've taken care of business my whole life. Why do I have to feel guilty for wanting to take care of myself???

That felt so good to write!!!!!!!

[cali1892]

So, I'm 40, and I feel the exact same way. Lord, I wish I had the answer for both of us. If I leave work I feel like I'm looked at as lazy. If I stay at work I'm looked at as lazy cause I don't want to do anything afterward. Ugh, sometimes it just feels like a no win.

Hang in there. And know you are totally understood, even if it's not by the ones who need to.

[ladibabe]

I'm 40 and am very tired all the time but while I'm at work I don't feel so bad. I once I get moving I do much better. I hope you guys continue to find the strength to keep moving. This disease will sit you down soon enough. So do all you can now even if it means kicking yourself in the butt a little harder. Praying for all of us!

[valeriem2220]

I want to continue working for as long as I can because I agree with my neuro when he says that work is therapeutic.
He says he has seen too many people stop working and go down hill very quickly because they don't try as hard and they become less mobile.
I am going to have to give up the job that I currently have, soon I'm afraid, because I just cannot do 12 hour night time factory work much longer.
I am hoping to get back into college this fall and finish my degree that I started and get into a much less physical line of work.

[freedom1]

I am 53 and stopped working 3 years ago. At the time it was a very hard decision. I loved my job, however I had no quality of life. It took all the energy I had to do that job. I had feelings just as you all do, how would others perceive me, what would I do and how would I fill my days. Eventually I came to the decision to go out on std to see if a short rest would help me to feel better. As the std came to an end I opted for ltd and am now on ssdi.

I was surprised to find out how much better I felt staying home. I finally had some quality of life again. I wasn't so exhausted that my whole life was passing me by. I no longer spend my time at home sleeping and unable to do anything.

Yes I still get tired but I am able to take cat naps when needed and my days are full. For me it was the best decision I could have made. I am sure there are people out there that think I am lazy, not a fighter. I fought everyday for 25 years. Besides who cares? It is my life and I am finally enjoying my life again inspite of being dealt a hand of MS.

If your employer offers std think about it. You can always go back to work at anytime before it ends. That was the rationale I used and I learned that staying home was the best thing for me physically and mentally.

[Omzone]

Stopped working at 39

I hope this helps find you peace.

I was 39 when when my Neuro Dr. told me I was "done" working. I could not understand what he meant at first... cause I just could not "understand". It was very hard to hear that I no longer was functional at such a young age.. He said, apply for SSDI.. cause if you continue working... you just may not make it to your 40th... You fried your brain, its time to heal, to get better...

I am 41 now.. I took his advice. Even tho I still write backwards.. I do feel better. It has been a long recovery and still working on the healing process. It was very difficult not work..but it was the right decision. I can speak normal, walk better, feel better.. and I smile more than I had in the last 10 years!

I am very lucky to have my Husband who understands. Instead of me falling over when I got home from work.. He sees me awake and living. This is why it was the right decision .. Cause I am learning to "Live again".

LISTEN TO YOUR BODY!!! IF YOU NEED THE TIME TO FEEL BETTER.... PLEASE TAKE THE TIME!!!!

(If stopping completely is out of the question.. still consider your options. You can work part time and get SSDI.. just don't go over your limit..look into it)

Omzone

[skreynolds57]

Not due to my MS directly, I lost my job last year and was able to do some part time work for a few months after that. But my reality is this. It's not supposed to matter, but at 55 and obviously disabled to some degree (walking with a cane, and already unemployed, in this economy, I can't expect to get hired. I've had a number of interviews and sent in many applications, but I'm accepting the fact that I am probably done.

So off on the SSDI route and helping my wife in her business.

I do like sleeping in

[Seasha]

I understand your dilemma. Reading your post made me revisit my working experience and how hard is was for me to make my decision to finally let it go.... it was a complete lifestyle change! but a good one!

Here are a few thoughts. Does you doctor know how hard work has become for you? My Dr. even suggested to me that maybe it was time to apply for SSDI. It was on a rare visit that I asked my dh to come with me. When he heard those words coming from the Dr., I think he finally "got it" - although he could already tell how exhausted I was after a day of work.

Does your dh ever come to Dr. visits with you? If not, maybe it's time.

Does your employer know how hard it has become? Have you tried to ask for reasonable accommodations? I went from 40 hour- to 24 hr. and with my 45 min. commute one way, it was still too much after a time.

I know it's a hard decision. It was a bittersweet one for me, but now after 3 years at home, I can't even imagine how I did it!! I have so much more energy and smile/laugh more, am more relaxed and positive! My dh is happier too as a result. He gets home cooked yummy meals every night when he comes home.

And I agree - it's your body! You need to give yourself time to rest and recuperate. Sometimes women give and give to others so much, often letting our own needs take a back seat. We need to relearn and reorganize our priorities!

Take care now! Seasha

[onlyairfare]

It's a tough economy now and one is not always able to get a "better" job, but if possible could you change to an easier job?

Maybe one with shorter hours, less physically demanding work, or part-time?

I've switched to jobs with day-time hours, less physical demands, and shorter commutes, all in the quest to find a full-time job that has good benefits but remains doable for an MSer. It's a hassle to change, but still better for me overall.

[dpmich]

I was dx in 2007 (I think) and it has been a bugger. The past 6 months have about killed me. Well 10 months. Had a very intense/terrifying asthma attack (never had one before or since TYVM!) on June 2nd, 2011 then an exacerbation the end of Sept 2011. I was dx as hypothyroid, low vit d etc the same time. Moving from couch to bath was a long exhausting trip. I don't feel I have recovered from all of that since then.

I went back to work 1/2 days in Nov for 2 weeks, another week off in January, then only partial weeks from then on mostly. In Jan/Feb, I told my GM that it was time to look for my replacemnet. The start of March I told them I was done the end of March. I barely made it till then. Friday 3/30/12 was so hard. Broke my heart to leave but knew I couldn't keep going.

I'd work, come home and sleep. That was it. I hope and pray it was the right thing to do. I guess what I am trying to say is that no matter what, until you adjust, you'll feel it was the wrong choice. At least that's where I am right now.

[Sunshyne]

These replies are all so good.

Seasha, I do go to my appointments with my dh, but I must say because he is there, I keep much of how I feel to myself. Isn't that just so stupid?? I've always spoken my mind, but this is a sore subject for us right now. I just always play things off...in the meantime, he sees me absolutely exhausted everyday.

I went from 40 hours to 32 hours a few years ago, with all benefits unchanged. I'm fortunate enough to have medical coverage under my husband's employer as well as my own. So not much would change there.

This a second marriage for both of us and it took quite a few years to regroup...but we did.

I see my neuro in a few weeks...I think it's time to stop sugarcoating things just so my dh isn't uncomfortable.

I'm an accountant so my job is not physically demanding. The decrease from 5 to 4 days is good...but when I can't commit to the four days, or can't do it without killing myself, something's gotta give.

This is a really good discussion.

[cali1892]

Sunshyne, please say something to your neuro. As I just went to mine two weeks ago and did not say a word because of my foolish pride. Mine you I went with it on my mind to disgusts but I just could not get the words out of my mouth. And I even took my husband to help me (he had never been before). My husband had warned me before hand that he would not bring the subject up but if I did he would help me. And I couldn't. I'm just stupid. Now I have to suffer until I see him again in august. And I do mean suffer.
So for both of our sakes please say something.

[Seasha]

This a second marriage for both of us and it took quite a few years to regroup...but we did.

I see my neuro in a few weeks...I think it's time to stop sugarcoating things just so my dh isn't uncomfortable.

Hi Sunshyne~ well, sweetie - I can understand to a point of not wanting your dh to be uncomfortable, but what about you?? You are, to say the least, very uncomfortable with your working arrangement... if uncomfortable is the right word even. Why would he be uncomfortable anyway? - just curious.

A few years back, my dh and I had a very honest and candid discussion about my working vs. not working. I think he had a hard time wrapping his head around it. Maybe he was fearful of reduced income? Anyway, I asked him to wear my hat just for one moment. I'd wear his. If it were the other way around, I'd pitch hit for him in a second! He has been a jewel ever since (our 2nd marriage too )

btw, you are NOT stupid!! maybe a little fearful and hesitant, but the more you open up, the more liberating it is.

So, take a deep breath and go for it!!!

[MSSINCE09]

Had to quit

I was diagnosed at 35 and was told by my neuro to quit right before i turned 37. Once I was diagnosed I completely went downhill. I was having a flare every 2 months for the first year and half then every 3 months and I finally just went 5 months with out one. Each one has taken a toll on my body. It was a very hard decision and after many tears and much fear on 3/30/11 I called it quits to my career.

I have found things to fill my days and am not so exhausted all the time that I cant be a part of my family. I now have quality of life.

I wish you the best of luck in making your decision.

[muse_7]

I just wrote a post with a lot of the details of my history so I won't go into it here. But I let things go until I couldn't ignore it anymore and my body decided to stop functioning period. I had no choice but to stop working because I couldn't walk much or think straight at all.

So my answer would be it is time to stop working when barely getting through work is all you can manage. If you have no quality of life outside of working. And frankly you should stop before it gets to that point.

I was fortunate in that when I quit working I had time to work on my diet and pace my excercise. So as a consequence I actually am doing better than I was at this time last year. But I am sorely reminded as soon as I eat the wrong thing, have a lot of stress or overdo in the moving department. I get right back to where I was.

The most important thing I think is to not take not working as an excuse to stop living. You need to have social contact and find a level of excercise that keeps you as healthy as possible without putting you out of commision. It's a very fine line.

You will have to make finanacial decisions that frankly are painful. We dropped the insurance on my husband's truck to save money. Now he drives my car to work because it gets better milage but that puts me without a car. We are lucky that he can work from home on the days I have doctor appointments. We have used savings to pay off some bills so that living on one income is easier.

It's a hard decision to make. There are health, emotional and financial concerns that complicate it. But it turned out to be a great decision for us. He has less to do at home when he gets off work and I have been able to stabilize my health as much as possible under the circumstances. We are a lot happier and more aware of the big picture.

Good luck to you!