Did you get to the point you felt you had to walk away from your job?

[roxie60]

I am really struggling. I have tried for many years to overcome dealing with chronic illness and still try to work. Feeling the need to hide my dysfunction because I was fearful (people can be very mean and unsupportive) of being thrown under th bus. I realize I am not funcitoning at any where near the levels I use or need to but I am my sole support and I was trying to get through the next 2 yrs and 5 months and just take early retirement w/ healthcare. But I am not making it. My boyfirend/last local friend is very short with me. I know he doesnt understand even tho he sees what happens to me but I think he plans on moving, why be saddled with someon who is sick all the time. I have less strength to stand up for myself. I neve thought I would get to this point but I dont know what else to do. But I am scared of walking away from a job (or letting them fire me because I cant perform) when I have no other source of income. So I was wondering how many of you finally got o a point where you knew you could no longer do your job and walked away? Im looking for those who were their only source of support/income/health benefits. If you did this was it because you felt so bad you could not think of altrnatives? I really dont wnt to give up but I am so tired of the battle, daily (people and body). Tired of not improving much and worried about my future. I am looking to know if it was as bad as I am envisioning it to be or am I just afraid of a change becuase I have always worked?

 

[*GG*]

Almost, 3 years ago I went into a bad flare up and was out of work for nearly 3 months. I have LTD, but wasn't sure of if I wanted to go thru whatever that entails. I had short term disability, so that helped me get thru the 3 months.

I used to work (5) 7.5 hour days, before I was sick and for a while, when I was sick, until I got a diagnosis, which took over 2 years. Waiting for FMLA to be approved, I took Wednsdays off to give myself a rest. I had my FMLA paperwork written up, so that I could get Wednsdays off for rest. But this had other implications for my employment. I didn't have much time on the books, so I would not earn sick time, because I was off the books to much. I also did not hit the trigger for accumulating more vacation time, like everyone else recieved.

So my Union finally came to bat for me recently and got my work days shortened, but I still work 30 hours/week. And am now accumulating sick time and will hit the vacation trigger around the end of this year.

Hope this gives you some ideas on how you might be able to alter your schedule, so that you can continue to work, and not suffer major financial repercussions!

GG

PS Feel really sorry for you. I have been doing the best I have ever done with this damn illness. I made a lot of changes with my flare up of 3 years ago. Was tired of chaning one thing, and taking weeks to months to see if it helped! Have you tried LDN? How is your Vitamin D? I also take oxygen with my vPAP.

PSS I also understand the unsupportive and mean people thing. My coworkers could care less about my illness, never showed and interest. Hard to explain anyways. I have been disciplined over minor things, they are trying to fire me! But I try not to let that get me down, I just need to go with the flow as much as I can. I am only 1 person and can only do so much, in many regards.

Feel free to PM me, not good on keeping up on threads.

 

[alex3619]

Hi roxie60, I think it depends on your social support system. Walking away could be disastrous, depending on consequences. We do it because we have to, it becomes essential at some point and so is no longer a choice. If I had choices and understood more I would have been much better off walking away, my health would not have been damaged so much.

I have had to walk away three times, I kept trying to find another solution, another job, another path. The first time I was exhausted with no explanation, I could not function at work at all, I had no choice. The second time I developed severe muscle pain, exhaustion and neurological symptoms. Again I had no choice. The third time was from study, not a job, I was working toward a PhD. It involved a lot of math, reading and writing. I reached the point where I could no longer count to three, read a senence, or write one. Game over. If i had walked away earlier I might have reduced decades of pain and exhaustion. Its a very tough call.

My advice: explore all your options, ask for help from others to help you explore them.

Bye, Alex

 

[Sushi]

Roxie,

Have you explored Americans with Disability accommodation options? You probably have, but this is another avenue of help.

Best wishes,
Sushi

 

[roxie60]

thanks guys for the support and suggestions. Found a support group for CFS/FM, going tonight. I really just want to go home and goto bed, rally bad headache, sinus pain, brain stupor, muscle sore. Hard to sit at desk and keep head up. But I need to try to go. I just feel torchured. I despareately need restful sleep. Just added CoQ10 to protocal two days ago (I think it was 2 days?).

 

[L'engle]

Walk away while you are still well enough to walk. If you collapse and have to be carried out it will be bad for your long term recovery...

 

[Tito]

I think before walking away try to check what is available to you as state benefits, insurance policies, employment adjustments, etc. and try to obtain the info from a reliable source, and not from doctors, patients, friends' friends or obscure websites. These legislations are minefields constantly evolving and the slightest mistakes could cost your dearly.
Also, make sure you base your decision on the worst case scenario, not on the idea that 'I'll be able to get back to work in 2 months' time'. Even when people recover, it takes years, so...

 

[Ema]

It took me almost three years to get approved for SSDI disability. I also had a private LTD policy through Unum but they terminated my benefits after a few months (for not following "standard of care"; whatever that is for CFS) and under the current ERISA laws, I was not able to prevail in court.

I would make sure that you have a plan to support yourself through savings for a minimum of 3 years before you quit if at all possible. You will also need copious documentation and statements from doctors etc in your file if you plan to pursue SSDI disability. I would strongly suggest consulting a lawyer that specializes in disability cases in your area. They can help you make a plan and make sure the documentation is in place for your best chances at success. I have never known a case of CFS or fibromyalgia to be approved before a hearing (it may have happened but it is rare because it is not a "listed" condition). So you will have to prove your illness keeps you from working, not just that you have the illness in question. And that is impossible to do if you are still working. It's a catch-22 from a financial standpoint. You can't stop working because of financial reasons but if you are working, you can't qualify for disability.

I would also look at websites like disabilitysecrets and others so that you can understand how the process works as best as possible. It is full of minefields that I never expected and I fell into almost every one with the Unum debacle.

 

[*GG*]

I would also look at websites like disabilitysecrets and others so that you can understand how the process works as best as possible. It is full of minefields that I never expected and I fell into almost every one with the Unum debacle.

Is this the website you were referring to?

http://www.disabilitysecrets.com/

GG

 

[*GG*]

thanks guys for the support and suggestions. Found a support group for CFS/FM, going tonight. I really just want to go home and goto bed, rally bad headache, sinus pain, brain stupor, muscle sore. Hard to sit at desk and keep head up. But I need to try to go. I just feel torchured. I despareately need restful sleep. Just added CoQ10 to protocal two days ago (I think it was 2 days?).

good, hopefully they can help guide you to the better/best Doctors, lawyers etc..

My sleep used to be horrible also. I feel much better upon waking now, so I think sleep is a major thing to try to imporve upon. One of my accommodations was a later start time in the morning. Does your Dr do Cortisol testing and etc..Hormones. I think hormones are a very crucial part also, probably more so for women, not me.

GG

 

[Ema]

Is this the website you were referring to?

http://www.disabilitysecrets.com/

GG

That was one of them that I looked at but seems more "find a lawyer" oriented than I remembered. It does have sections on CFS and fibromyalgia though.

 

[hurtingallthetimet]

sorry you are going through this...i know how painful and depressing it can be...i had worked my whole life..enjoyed working and helping provide for my family...i was always really really busy in so many ways..and wehn i got ill to the point i knew i had to quit it really upset me..

i was not only losing my job but my soical life...the pride i took in providing for family and i felt useless..i thought id take a a few weeks or month off to rest and then get a less stressful job..or part time job..but i kept getting mroe ill and with more illness...

i still miss work badly i always put so much vaulue on it..i thought of online part or something..but my short term memory bad...i have to take medications or i cant function even at what level i do...so many issues...i feel my intelligence has dropped so much

..getting grocerys and doing what i do around house wears me beyond out...and conselour made a good point told me that caring for family is a full time job and i need to accept thats all i can do..i feel bad though cause i dont do as much as i use to..or as a good of job at it..have to lay down constatnly family has to help alot...etc..it took me along time to even let hubby start doing majority of shopping etc..but im just too ill to pretend and force myself to do things...i mean i cant lay down in food isle or anyting in between shopping..

we lose so much being ill...its very very hard..i hope that you feel better...i just wanted you to know i understand how you feel take care....

 

[K2 for Hope]

Roxie, I had a similar experience as Ema. I am single and have no one else to rely on. I had a very good job, LTD and all the insurances.

I had no choice but to stop working as I slept around 20 hrs/day for the first few months and literally couldn't get out of bed. My Dr didn't want me in the hospital as I had just had one of the most severe cases of pneumonia she had ever seen.

I had no income at all for almost 2 years and had to use my 401k and IRA's and pay the penalties for doing that.

My company's LTD disability also didn't come through as planned, so I no longer have health insurance or life insurance. It is very difficult even with a lawyer to get LTD through a company plan for people with ME/CFS.

I did manage to get SSDI after 2 yrs of applying and using a lawyer for that as well. And, it did go before a review board. So, I now also have Medicare for health insurance, but it is very limited in what it covers.

I had over 400 pages of documentation from all sorts of tests, studies, functional evaluations, specialists in ME/CFS, etc. I spent a tremendous amount of money just proving I was ill. (Tens of thousands of dollars.)

It is a very individual decision if you have the ability to make the decision at all.

 

[Tito]

There is also something to keep in mind. Don't expect to be able to rest once you stop working. The amount of time and energy to work out legal issues such as benefits, insurance, etc. is unbeleivable, especially as it is something we know nothing about when we start. Personally, the first 26 months fo my sick leave were more demanding that my previous job: there are tight deadlines to appeal, the system is made for healthy people with lots of energy, the technicalities are countless, sometimes doctors admit something verbally but refuse to put it in writing and you're stuck, etc.
Sorry to bring bad news but this is the truth.

 

[BEG]

Ema and others bring up a few good points with which I agree from my own experience. Apply for disability as soon as you know you can no longer work. I've always heard, the earlier the better. Then immediately find a lawyer not only experienced with disability cases but one with ME/CFS cases. Be prepared to wait nearly 3 years. Your first check will be retroactive to the date at which you applied for disability, and your lawyer will take their fees (which are capped) before you even see it. Expect another smaller invoice from the attorney for incidentals.

If you feel up to it, you can try to work now and then until your illness sends you home, which it undoubtedly will. The SSA will call these jobs "failed work attempts." Unfortunately for some who are able, there is no "partial disability" where you can obtain permanent part-time work. You are either totally disabled or not disabled.

Yes, I had to "walk off the job" because of this disease. However, I followed the proper channels and applied for short-term disability first. My company closed before I was able to apply for long-term disability. (A bit of rotten luck.)

I wish you good luck and a lot of support with this terrifying change. Many of us here have gone through this process and can relate.

 

[caledonia]

Do not "walk off the job", try to find an easier job that pays less, or a part-time job. You will screw yourself financially. Go out on disability.

1) If you can't work full time, you're eligible for disability. Make an assessment of all the disability programs you qualify for. Contact HR and see if you have Short Term and Long Term Disability. Get a copy of your Plan Description. This will tell you what is, and isn't covered, the "elimination period" to apply and so forth.

If you're in California and one of four other states, you also have state disability.

2) You're close to retirement, so getting on disability will be easier than for younger people. If you have less than a college education, then that's even better. SSDI considers you too old to be retrained for other work.

3)You don't necessarily have to prove that you have ME/CFS. What you do have to prove is that your illness prevents you from working full time, due to fatigue, pain, concentration problems, etc.
The best tests for this are:

• Functional Capacity Evaluation (from a physical therapist or physiatrist)
• Neuropsych Test (from a psychiatrist)
• any other abnormal labs or tests

You can reuse the same tests and medical evidence for all of your disability claims. It's often an accumulation of several conditions that will get you approved, so the more you can come up with, the merrier (both physical and mental), even if they're secondary to the primary condition, ME/CFS.

4)You may be able to get a lawyer or disability representative involved right from the start, especially for SSDI. But definitely, if you have any trouble from any insurance company (denial of claim, harassing or threatening phone calls, etc.) hire a lawyer immediately to handle the appeal. You need an ERISA disability lawyer for STD/LTD and a Social Security Disability lawyer for SSDI. You can contact your local bar association for referrals. Interview three lawyers and pick the one you like the best.

A lawyer should have a good idea of where to get the Functional Capacity and Neuropsych tests done. Your medical insurance should pay for them. There are no out of pocket costs for an SSDI lawyer. However, you will most likely need to pay an LTD lawyer a retainer to start, then if the appeal loses, they should take you on contingency.

5) Apply for STD first, then LTD, then SSDI (around the same time you apply for LTD). For LTD you need to be unable to work at your current occupation (generally for 2 years, see your Plan Description). For SSDI, you need to be off work, or have doctor's letter saying you're expected to be off work for at least a year. You have to be unable to work at "any occupation" that you have experience or education in, or could be expected to be retrained in.

 

[K2 for Hope]

A couple good points as I nearly had a total breakdown from the stress of applying for disability. I also applied for short term disability twice at my job trying to return to work in between before I just didn't think I was going to live much longer (and neither did my Dr.).

So, as you can see, it's no picnic, but when you truly cannot work, you cannot work. I would suggest to take the points people made about 1) documenting everything 2) getting a ME/CFS lawyer 3) find out all you can on cases that were successful and why.

We are here to support you in any way we can. I wish you the best of luck as you are between a rock and a hard stone.

 

[ahimsa]

Caledonia gave excellent advice. I can't think of anything to add. I went through a similar process myself.

The difference was that I went through many cycles of going on short term disability and then going back to work. It took years before I was finally too sick to work at all. Yeah, I pushed myself, and probably made myself sicker, but it was because I loved my job.

To repeat the high points: Make sure you get copies of the disability benefits plans. Find a supportive doctor (or 2-3, including specialists). Make sure you document everything the best you can.

You may not need a lawyer for social security disability (I got my benefits on my very first try, not only no lawyer but not even an appeal, and I was only 40). But you will definitely need a lawyer if you are trying to claim disability benefits that are covered by ERISA laws. Your lawyer will understand what data you need to have included in the administrative record. Don't wait to hire the lawyer until after you are turned town by an ERISA LTD plan. There are weird laws (unfair laws) covering these type of disability plans.

Sending you many HUGS

 

[Tammy]

Roxie, I am sending hugs your way and am so sorry you are between a rock and a hard place.............I remember well when I was in that situation. I ended up moving in with a friend until I got disability. To answer your question............I absolutely had to walk away.......my body could no longer go on. (And it paid dearly for me pushing the envelope) You mentioned being afraid of getting fired.............even if that ended up being the case.........could you then file for unemployment? I always got mixed up about when you could or couldn't apply for unemployment...........but if you could that would buy you some time until you got disability. I don't want u to feel like there are no options..............keep us posted and hang in there. Tammy

 

[Ema]

You mentioned being afraid of getting fired.............even if that ended up being the case.........could you then file for unemployment? I always got mixed up about when you could or couldn't apply for unemployment...........but if you could that would buy you some time until you got disability. I don't want u to feel like there are no options..............keep us posted and hang in there. Tammy

To file for unemployment, you basically have to affirm that you are ready and able to undertake full time work if it presents itself. This can be a nasty shot in the foot for your disability case where you are essentially saying the opposite - that you can't work at all. I wouldn't recommend filing for disability while on unemployment. It's a big risk in my opinion.