How do you know when it is time to stop working?

I am struggling trying to figure out the whole "do I stay at work thing". I have had several bad flares lately and am now in the negative for my PTO/leave at work. I have informed my company I have a disability and they have been great so far. They have uninstalled flouresants above my desk, allowed me to work remotely, leave for doctors appointments etc. I feel so guilty sometimes because my quality of work is not consistent. I deal with constant paranoia that I am going to get fired during one of my flares or fogs. I was out 3 days last week , but this week I seem to be ok. It is so difficult in my position of a middle manager within the technology world to maintain my "image" while dealing with my conditions. It is hard to remember the details about systems that I need to remember to make connections and drive other people's work. the fog is definately affecting my ability to work :( I can sit at my desk and get caught in a trance and not even realize it some days.

I have fibro, cluster migraines (lasting 1-2 months), unexplained vertigo (which I am having test done for to see why), degenerative disc disease, hashimoto's thyrioditis, and chronic fatigue syndrome...not to forget the constant anxiety and depression as i cycle in and out of feeling normal.

On one hand i feel lucky that I can get around and still work...keeping focused on being blessed more than others...but part of me just wants to quit or go part-time. However if I go part time then I cant keep doing what I do and my salary would drop dramatically...decreasing any disability i might qualify for. So hard to work through all this. Most days I just do my best to wake up on time, get dressed and make it to work. From there I take it hour by hour until i get to go home. Then i have to keep it together while caring for my kids (8, 10) and then colapse. My drive to work is over an hour each direction which just kills me :( Got to love the Dallas area! It takes forever to get anywhere around here.

I don't know what I am asking for her, mostly I just want to be heard and be able to say what I am thinking out loud even if there is no clear answer. I can't really talk with husband about all this, it only stresses him out. And no one in my circle of friends or family understands how a 37 yr. old woman who looks fine can have so many health issues...just pull up your boot straps and quit complaining was how i was raised...but i can't control it. I do my best to hide it from most people but it get exhausting!

Well...this is it for my rant. If you have been a working professional and have gone on disability I would love advice on how you made your decision etc. I am going to start journaling so I can track my feelings a little better. but i just need to know im not the only one still trying to work full time feeling this way :)

Thanks y'all

I finally had to decide that my health was more important. I have worked through my Fibro for years and like you, some days weren't too bad, some were just too much to get there. I knew when sometimes I'd cry in the morning before work wondering how I was going to manage.

I'll be honest, it's been a tough decision. My family had to intervene. I was off work for breast cancer and realized that sleeping when I needed to, being on my own schedule was so much better for my body. What's also been hard is that my income was half of our family's. We have to sell our beautiful home and basically start over.

I saw my Dr. recently and he asked me how I was feeling at home. Again, not 'better', but so relieved not to have to struggle with work at the same time I'm struggling with everything else. He said I am on the severe end of Fibro, and he can't believe how well I function (or try to).
I just called the company for disability paperwork (LTD). I know it's not easy to get disability for Fibro but my Dr. is behind me so hopefully that will help me a little.

It's not an easy decision. I loved my job and the family I had there. I hated letting down my boss, hated calling in 'with unbearable pain'.
You have to do what's right for you. Listen to your gut and put yourself first.
Hugs -
Jacey

Hi SpicyCurry,
I feel for you. Our situations are very alike so I want to give you as much support as I can via this forum. I just started short-term disability this week. It was a very hard decision to make and one that I put off for many months. I work in technology too and I am also the higher paid between my spouse and I. I have worked extremely hard on my career and put a lot of effort into developing my skills. BTW, I have many of the same illnesses that you have.

My fibro has gotten worse this past year with the flares happening so close together that I went from days in between them to mere hours between and then most recently to continous flare ups where there was no reprieve at all.

Still, I couldn't decide to leave work. I felt guilty and unsure and all of the same things you describe. Eventually my body decided for me. I got so bad that I could barely make it through a day. I was shaking and weak and probably should not have been driving to and from work. My doctor said he's amazed that I haven't collapsed yet but I would collapse very soon if I didn't take time off. Now I am on an 8-week leave that my doc says will likely be extended and to 12 or more weeks. Who knows, I may even be headed for Long Term Disability.

The decision to leave work is a hard one. However, I think I did the wrong thing to leave it so long. I have damaged myself to a point where I need serious rest now in order to recover some strength. It could have been even worse, according to my doc.

If your body is telling you that you need to rest, listen to it. You will know when your pain and fatigue is beyond the 'normal suffering' you typically endure. Don't push yourself past that point because you can really damage your body and suffer even worse in the long run.

This week has been good in a weird way for me. I am still in pain and exhausted but the situation is more manageable because I can lay down anytime I need to and I can sleep as much as I need. I think that is the key to managing this illness. I need to lay down a few times every day and if I don't my body 'rebels' and goes into a terrible flare, including migraine headaches. I feel like being at home gives me an opportunity to better manage my illness and to have some element of control over how bad it gets.

Best of luck to you SpicyCurry. Keep us posted on how you're doing.

I hear ya! Driving is the worst. I have about a 20 minute maximum before it is too much and I'm wiped out from it. I have devised all types of tricks to keep alert while driving. (my commute is 30 mins on regular days and longer in winter weather)

1. Keep candy and gum in the car. The sugar is a good perk. Gum is best because I blow bubbles.
2. Keep the car window down to get the fresh air. This works especially well in cold weather. I even unroll the window when it's -25C
3. Blast music loud and sing loudly with the songs.

On bad days none of these things work. I swear I would fall asleep in -25C weather! It's really dangerous to drive in this condition and I am terrified to hurt somebody. I don't allow myself to drive anymore when I'm feeling poorly.

I think thi is another sign that you need time off. Something to think about.
Enjoy your weekend!

spicy- I had to stop work 3 years ago. I was on my death bed when I through in the rags. I worked nursing for 25 years. I think I survived so well waiting for disability form the state is because of the long term I was getting from work. If you haven't signed up and have the opition it's well worth it. The long term is not easy to get when you are sick. It takes an act of congress for them to give it to you. The short term is eay to get, but not long as I said. I had some huge medical problems at the time. Now they say just because you are disabled from the state, doesn't mean your are with them. I have been blessed because I have been receiving both still. My Dr. wrote me for life to be disabled. You will know when it's time. I tried to stop work earlier, but I was denied and went back to work for 2 more years. my kids almost didn't have a mommy because I got so sick. My health has improved so much. It took about a year to see daylight again. I actually think I spend less money now since I dont work. We dont go out to eat(rare), go in less stores, use less gas, no need for coffe money, no need for extra expense for work clothes, no need for lunch money. I buy at costco and go to the grocery store very little. Use to be so tired and we eat out or go to the store frequently which you pick up things you really didn't need.

Post Edited (ak angel) : 4/27/2012 10:15:29 PM (GMT-6)

Spicy,

When to quit working is a big and difficult question. I quit when I could no longer sit, walk, stand, or even lay comfortably. The pain was so bad that I could not breathe without extreme pain. It even hurt to cry. My onset was dramatic...I was perfectly fine, walking through the mall and all of the sudden, could not stand up the pain was so bad. My husband had to carry me out.

I was not new to chronic illness, as I was diagnosed with Lupus 3 years prior and continued to work and had a child. It was about a month and a half after having my child that this happened. I had years of testing and eventually came to the conclusion that it was fibro.

I think that if I had been on the right meds I might have been able to work longer...but when a flare hits, I could be out of commission for a week or more sometime...no employer likes that! Have you thought about meds to help with the pain? It is trial and error but they can help.

Just remember that your health is important and that if you don't pay attention to it, you could really be unable to help your family in any way...financially or emotionally. It is a hard illness, but you can learn techniques to make your quality of life better!

Best of luck!

LupusMomma

Spicy,
Thank you for posting this. I am struggling with the same question. My neurons told me she would gladly fill out papers for me but i am still very unsure. I have had several health issues for many years and was recently dx with ms to go along with migraines trigimenial neuralgia tmj and about four other things. I can't talk to my hubby as he gets freaked out about it all to the point he told me these things were all my doing, that was the last conversation we had about any of it. Last week a lady i have worked with for many years told me i was like knowing two different people before my issues started and now. That really made me stop in my slow moving tracks because she was right. I almost broke down right there at work. I do feel guilty for even thinking of this option but i keep coming back to the fact that if i do not do something about these problems the only people who will be affected is my son and the rest of my family, i will be replaced at work within two weeks without a thought, but i am the only mom my son has.
Anyway sorry about the rambling post i just wanted to thank you and those that replied to your post. It made me realize i am not the only one struggling with decision (and not struggling so much after reading this)
Wishing you all some relief

Hi,
I quit working this past December. I filed for disability and my case is still open. Fingers are crossed something gets decided, in my favor. My funds are depleting fast! It was tough to quit but I knew when I missed 18 days in 6 months of work I was not benefiting myself. Causing more stress, which isn't good for us. Quitting was the best decision but I am searching beneath couch cushions and drawers where I would put loose change. I've been trying to think of what I can do but it's been months of trial and error with doctors and meds. No way I can be a reliable employee at this point in time. Praying hard and I will pray for you. Good luck for all of us.
Thank you for the postings.

Hello everyone:)

Im so sorry for everyones pain on here! my dr recently told me i have this fibro, low vitamin d and osteroarthtis. I havent been able to work since the middle of may and im worried i may never

get to go back. I do alot of heavy lifting, standing. some sitting at times. i cant hardly do housework

in my home or even travel to the store without hurting so bad i cant stand it. im so tired...but cant sleep.

Does anyone know what may have cause this? I wish it would go away.

I hope everyone feels better soon

Milly....I wonder if SS approves people faster when they are already on their employers disability short/long term. I would think so....

4 months seems really quick compared to the couple of years I have read about it taking for some...(I'm sure every month "feels" like forever to all of us though!)

May I ask what has caused your PTSD? You can be general if you like...but was it from your job? Or something from your past as a child? Again...please don't share anything you don't feel comfortable with...

It does seem that any type of mental disorder that has been actually diagnosed like PTSD , Bi-polar and Anxiety, that these are listed for disability and this increases one's chance. Obviously no one wants to have these issues and I'm sorry that you do

I'm speaking just in general about how they approve SS...

Welcome, I would get some long term disability insurance to cushion you.

When I left my job I had long term disability insurance and a small pension to fall back on. It was tight but it supported me until my social security disability kicked in after 18 months.

Make sure to start a introduction thread so others will see you.