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

[roxie60]

I go back full time next week. Guess we'll see how it goes. I just feel empty. I know my brain is not working like it use to or needs to do th job. Thanks everyone for your responses and Palmer for the info. Will be reviewing this thread. I have reviewed the rules and yes trying to get disability is the last resort. I have been on STD 2 x's now and used all my time off for sick days. Just tired of the revolving door of can work/cant work. On top of it I just dont have the motivation to deal with unkind people. Been dealing with it for 19 yrs. By grace I keep putting one foot in front of the other. Thanks to all of you. Some good suggestions for me to look into.

 

[taniaaust1]

I hope something works out for you roxie **sending some hugz**

Unfortunately it isnt unusual for people to end up having no choice but to walk away from things. I was in college when I got this illness and pushed myself there getting worst, I really really thought I could make myself hold on and do it but it turned out I couldnt and I ended up long term bedbound due to that. I really really wish I'd left sooner... the consquences of forcing myself to continue my studies stayed with me for years.

When I was improved some I got some full time work.. a great job for a ME/CFS person in which I also got paid for being there for another while they slept (I was call for a quadruplegic person if he needed anything during the night). While he slept.. I slept too and got paid for it. (Ideal kind of ME job ).
Issue was I ended up having to leave that job as the guy I was doing the carework for, was so verbally abusive and cruel so I had no choice to leave it. The stress he gave (with psychological games and threats) wasnt good for my ME. I didnt regret leaving that job as soon as I ran into major trouble as I didnt really loose anything, as I was then able to just go into unemployment .

I then tried to apply for disability (Im in Australia so maybe things work differently here).. and while my disability application was going on (which keep on being appealed... I was forced to go onto unemployment.. I then got a part time cleaning job.. but unfortunately then developed MCS with the ME. Then unfortunately got sicker and sicker again due to the exertion too of doing part time work. The unemployment department made me keep doing the part time work under threats of they'd otherwise cut of my unemployment payments. Having to keep pushing myself.. my ability kept decreasing until i was only able to work 1-2 hrs per week and was completely unreliable even with that. At that point my specialist .. ordered me to stop completely working due to what it was doing too me and it just made the unemployment dept push me more and more and expect me to be doing more. (I loved my clearing job and my clients).

I think working even a little.. was harmful some to my disability case as it just kept up the expection there of those who kept assessing me of "maybe" i was possible of working (even thou I was doing less then 8hrs per week). I thought it would show them I was really trying and not lazy.. but it just didnt help things.

(So then I was still on unemployment with the fear they were going to cut me off due to their threats).. Fortunately at that point (third appeal) my disability pension finally was approved. I was so ill by this point that I couldnt even sit up at appointments and would have to lay on the floor. My cleaning clients.. they were writing to the gov dept over the fact I couldnt even do my job properly due to being too sick and hence needed to be on disability. (my agency boss was lovely and I felt so guilty as I was constantly letting her down). Disability no matter what country you are in, is usually one big struggle to get but which should end up getting after the long hard battle for it.

I cant advise you whether you should leave your job or not seeing you already have been struggling throu it for 18 years and only have a couple of years left before being able to retire. But what I do advise is to start keeping very good records of what is going on.. eg issues you have at work, where your health is letting you down.
Also make sure you have a good specialist who understands ME/CFS who can back you up when all shit hits the fan with things and who is willing to support you in getting your needs met eg fill out forms, write letters etc etc Having a specialist who is used to dealing with ME/CFS patients and helping them get onto things like disability etc etc could end up being important.

I just hope that what ever decision you make, that it will prove to be the right one.

For me.. I wish I'd left my studies earlier and also wish I'd applied for disability YEARS sooner (I avoided doing that as I knew it would be a struggle to get). I never thou thought the disability process would take so long and I would of never thought I'd be getting knockbacks to disability when I got to the point where I couldnt even sit at appointments.
I'd had a misconception that I'd get it easier the sicker I was when I applied which was actually fase.. the sicker I was.. the less I was able to deal with the whole application and appeal process and hence didnt present my case well (as my brain just couldnt).. if I'd been not as sick and able to think better..I could of presented my case better.

 

[roxie60]

Thank you everyone for your kind words, encouragement and sharing your experiences. Much food for thought. I do not take this decision lightly so I will fight with whatever strength I have left to keep my job (be it through multiple STD or otherwise). I have more work to do. How frustrating, just when all you feel you can do is spend multiple hours in bed you have to deal with this stuff. Again thanks so much for the hugs and kindness.

 

[loayachil]

I want to thank you Roxie for posting this.

I am in a similar situation, where I cannot function have massive headaches and may end up being fired. I also just started working at a new place, so I would not get any of the LTD or STD insurance.

However, I came to realize that 1) pain is optional. I think that if I stay lying in bed most of the day without needing to use cognitive thinking then I would not have the massive headaches and muscle aches that I have. 2) there are a bunch of protocols that I only just found out here, such as Rich's methylation fix, anti-viral, detox, etc that seem to take a toll on the body until they kick in and not working would allow for those to be taken and healing first 3) not working will allow the limited cognitive abilities to focus on healing and doing research and/or learning about the body.

I have no other support and no savings, and even though I have "friends" who would take me in, most of their extra living space is musty and I struggle to breathe there. (One offered me to pitch a tent in his back yard, and I am tempted to take him up on it.)
But I have maxed on my pain capabilities and cannot force my brain cognitively anymore. I fear that by doing so I will snap, although it is possible that that has happened already.

One more thought that might be useful: I am trying to get my insurance to cover a tilt test and spect scan, which often show abnomolies and would be useful. Insurances often do not cover the latter, as all it does is show that there is something wrong, it doesn't help you get better. I also am going to take a methylation test and see a gi doctor to see if there are any abnomolies there. Maybe try getting before you walk out as many tests as possible. Come up with a list of tests that often show abnomolies in cfs'ers (like those mentioned) and get tested with as many as you can. Even if these tests dont show how to get better they will ease your mind knowing that you are not "quitting" but that there is "hopefully temporary" damage. And they will be useful in the insurances. I also have signed up for various research tests which in a way are free tests.

IMHO, the decision should be based on which you will heal. If quitting would enable you to focus and not push your body till you heal, go for it. If quitting will just cause you to feel socially worse or as a failure (which we all know you are not) and cause a harder time trying to relocate, get ssdi etc then dont.

May G-d help you make the right desion,
Lo

 

[loayachil]

And one more thought. Whatever happens on November 6th may change the playing field, even if there is a status quo in DC. As someone above mentioned, start the process early. Even if you dont follow through with it, maybe start the ball rolling will help.
Let us know, as I will probably be following suite.
Lo

 

[taniaaust1]

However, I came to realize that 1) pain is optional. I think that if I stay lying in bed most of the day without needing to use cognitive thinking then I would not have the massive headaches and muscle aches that I have.

Headaches thou too much having to think can easily cause them is is probably the cause if your work involves thinking.. they can be compounded by lack of blood volume getting to the head even when just sitting. I suggest if you do a lot of just sitting at work to find something to rest your legs up on which "may" benefit a little if you have a blood volume issue.

 

[Valentijn]

It was easier for me. By the time I hit the wall, I was only doing a volunteer job for four hours, one day per week. But it was still very hard. I really liked the job and the people I was working with. I liked the feeling of self worth to being giving something back to the community.

But I was at the point where I would crash more often than not after taking the bus home, so that was that. The manager was very understanding, since she also had a fatiguing/disabling issue, albeit much less severe, and told me I'm welcome back any time.

I think that sort of walking away might be a lot easier in general in a country with stronger support for unemployed and/or disabled people. If the job is the sole source of income and you live where the sick and disabled can't afford to be discriminated against (USA), coming down with moderate to severe ME/CFS would be a nightmare of epic proportions.

 

[roxie60]

For those trying to understand disability options here is an article I ran across (thanks again Palmer for sharing suggestions). Still trying to come to grips with the idea of disability but dont think I can deny any longer what is happening. Just thinking about trying to get disability is overwhelming, all the paper, keping track of sympss, conversations, not making miss steps, makes one feel very vulnerable. I dont even know if I need a lawyer but I do know I need an advocate to help me understand what I do need. For those who maybe reading this I am another example of someone not realizing the benefit of carrying yur own disability isnurance. There are benefits but you have to have it in place before you need it, who ever thinks when they are 30-40 years old they might need disability ins especially if one confuses the disability ins provided by an employer with personal disability insurance.

http://fmscommunity.org/debofsky.htm

 

[roxie60]

As an update, I had to go back on disability first part of Dec. I thought I would go back in February but I still could not function. Now I have lost my confidence in my own abilities, I am no longer the person able to multitask, keep up a home and have outside interests. This has been so demoralizing. I know so many can sadly relate. I finally started to come to grips with reality when my Dr said she woud be happy if I was better in a year. I just know how demanding my job is and I need to know I have a chance at succeeding. I could not even remember to do time reporting each week, I always thought I had completed it. I have requested LTD, started the SSDI app (still working on), submitted to the company IME (not a pleasant experience, frustrating). I have been down, I try to muster motivation but nothing, feel like a walking zombie. Yesterday got a letter from company, now they want all my counselor notes for the last 1.5 years. What an awful process, demoralizing people already at a low point in life. I have been living off my IRA and the next dip will include penalties and taxes which takes a big chunk. I have no help from the lawyer cause he doesnt get involved until company denies LTD. So I feel very much alone, what is new. The company seems to be leaning towards the 'mental health issue' instead of medical reasons. Today the LTD rep tried to tll me the reason they ask for the mental health reacords is just in case I dont have a medical disability they can 'offer' me a mental health disability - isnt that sweet, right sure they care about my interests. Sorry just kinda grumpy tonight. Frustrated I cant get or maintain any energy. On a postive note I am gettting improved sleep, Dr thinks it maybe the estridiol that was added. It still is not refreshing but some symps are reducing. Probably that period where I do better before the next crash. My best to everyone here fighting this battle!!!

 

[loayachil]

Thank you for sharing Roxie,

Well, I just got laid off, which is probably more of a blessing. I am eligable for unemployment, and I might take that time to look for a job which is not to taxing. I am hoping that the battle to get unemployment is easier than disability. (The main reason I didn't go on dissability was I didn't have the energy to go through with it.) Will see how long a new job will last, and see if not moving is helpful.

Thanks,
Lo

 

[ahimsa]

As an update, I had to go back on disability first part of Dec.
<snip>

roxie60, thanks for the update. I've been thinking of you.

Filing for disability, whether just social security LTD or an LTD claim covered by ERISA law, is a really tough process. For me it was an emotional roller coaster. So many different feelings going on.

On a postive note I am gettting improved sleep ...

I'm so happy to hear that there's at least a little good news. Sleep is so important during this stressful time.

I hope you get all the support that you need. This is a bit rambling but I wanted to reply now while I'm thinking of it.

Sending you lots of hugs.

 

[roxie60]

Thx ahimsa for the well wishes.

Lo, sorry to hear about you being laid off. I hope you wil have an easy go for unemployment. Seems now a days nothing is easy but then I dont think any of us really expect that after all we deal with. Dont think we are looking for easy just answers, recovery, normalcy, competent Drs and being fairly dealth with by ins companies, ect.

I started an hour ago to try and put together a rebuttal to the IME I received. I know the day I got home from the IME I took the time even though I was exhausted and hurting to write some of my reflections down about the IME I just went through. Now today I have spent an hour trying to find th damn document in my laptop (dont know if I mentioned but I have worked with computers (all kinds, sizes) for 30 years) and I'm in tears out of frustration of not being able to find the document. This happens so often, not able to find documents. Also reading through the IME eval, which the company made me run in circles to get a copy, and I was trying to remember where I found a single word in the evaluation letter, I had to repeat looking for it at least 5 times, makes me angry. These simple tasks came without effort for most of my life. Maybe this is just ramblings to most but it is just a constant reminder that I am not the person I use to be. BTW, I'm still looking for the reflections document I wrote after the IME, guess I'm going to have to create a new one. Having to create it from scratch again has got me down and frustrated. I find it hard these days to write my thoughts down, to start documentation, it takes so dang long. Sorry for the rant, just very frustrated.

 

[taniaaust1]

Thx ahisima for the well wishes.

Lo, sorry to hear about you being laid off. I hope you wil have an easy go for unemployment. Seems now a days nothing is easy but then I dont think any of us really expect that after all we deal with. Dont think we are looking for easy just answers, recovery, normalcy, competent Drs and being fairly dealth with by ins companies, ect.

I started an hour ago to try and put together a rebuttal to the IME I received. I know the day I got home from the IME I took the time even though I was exhausted and hurting to write some of my reflections down about the IME I just went through. Now today I have spent an hour trying to find th damn document in my laptop (dont know if I mentioned but I have worked with computers (all kinds, sizes) for 30 years) and I'm in tears out of frustration of not being able to find the document. This happens so often, not able to find documents. Also reading through the IME eval, which the company made me run in circles to get a copy, and I was trying to remember where I found a single word in the evaluation letter, I had to repeat looking for it at least 5 times, makes me angry. These simple tasks came without effort for most of my life. Maybe this is just ramblings to most but it is just a constant reminder that I am not the person I use to be. BTW, I'm still looking for the reflections document I wrote after the IME, guess I'm going to have to create a new one. Having to create it from scratch again has got me down and frustrated. I find it hard these days to write my thoughts down, to start documentation, it takes so dang long. Sorry for the rant, just very frustrated.

sorry to hear what you are going thou. Im going throu same kind of thing with paperwork today, I was putting together a rebuttal and response to the states Disability Service, I may of had it nearly done (I spent several hours on it over a week) but I now dont know where I've saved it and right now are dreading even trying to look for it as Im worried I may not find it. Sorting out things and doing proper letters in response to trying to get ones needs being met, is hard. An added strain.