Staying home on disability

[ttmont416]

I deal with fatigue all the time. Lately its been much worse. I work full time, drive in traffic both ways, and try to have a life.. Lately the fatigue is making it hard to get up for work. I have an appointment with my neurologist in 2 weeks. When do you decide to stay home and not work? I have always worked my whole life so staying home all day would drive me nuts.. Any ideas on part time jobs I can do at home??? Im a nurse..

[22cyclist]

I deal with fatigue all the time. Lately its been much worse. I work full time, drive in traffic both ways, and try to have a life.. Lately the fatigue is making it hard to get up for work. I have an appointment with my neurologist in 2 weeks. When do you decide to stay home and not work? I have always worked my whole life so staying home all day would drive me nuts.. Any ideas on part time jobs I can do at home??? Im a nurse..

It is such a personal decision between you and your doctor. You also have to meet the SSDI requirements for disability, that is a whole new thread but also there is a forum on here about SSDI and how to apply and such from a group of SSDI lawyers.

I stopped nursing when I could no longer walk without assistance in the ICU. I also experienced problems with swallowing and talking at the same time which compounded the problems and added to the decision.

I tested in the moderately cognitively impaired range so that was automatically a consideration for disability. I was having trouble with words, spacial orientation on testing, short-term memory issues, and other small things. My language was fine.

I too was very tired all of the time. I have to nap during the day.

Again, it is a personal decision.

As for part-time work for nursing, there are many advice lines you can work for and online advice for some insurance companies.

You can also perhaps work for the MS society.

You will find the right fit. You will know when it is time.

[ttmont416]

Thanks for the advice.. It always nice and comforting to come on here and get words of encouragment and or just hearing others are in my same shoes.. I think the hardest thing is to accept that your body and mind cant do what it used to do.. I just graduated 2 years ago.. I used to work in the hospital as an aide while I was in nursing school and there is no way I can do that anymore. Its way too physical which would wipe out all my energy in 1 minute.. I tried private care, but being the only person lifting and moving heavy patients who are bed ridden, also wiped out my energy. My boss asked me the other day if I need to step down as a nurse, and look for something else.. If my boss is saying that, it makes me wonder.. I am not ok with all this change.. I try to take one day at a time, but its hard because I have to try and think ahead so I can figure out what I need to do as far as work and income.. Thanks for listening..

[drgnlny]

For me it wasn't a choice - after fighting against fatigue and issues for quite awhile and 2 STD leaves...I went out on a 3rd STD leave...thinking it would be a few weeks and I'd recover but that did not happen. After a year out and my condition just as bad as when I first went out - I knew that was it.

My bf of many years was mad at me for not going on sooner - I think he believes my condition became so bad because I worked and pushed myself too hard. But for me - if I could still work, I wanted to - it made me feel productive and useful still.

So, yeah - it is definitely a personal decision. I don't know had I left sooner if my condition would have been any better at this point or not. But I will tell you on THIS side of things...if there's a chance I could have retained more of my ability had I stopped working sooner - it would be WELL worth it.

When I was younger and healthy - I totally thought that it was so 'cliche' when people would say 'well, at least you have your health.' Unfortunately - you don't know just how important that is until you don't have it!

You just have to make the decision that is right for you...and I wish you the very best in doing so! ((hugs))

[BigA]

I wanted to pass on the name of a company that does nurse lines for people with rare diseases. I was so happy because the person on the other end of the line had MS. She's gone now and the replacement nurse just isn't the same. She doesn't know her Avonex from her... so to speak. It's called Accordant and I'm sure there are similar places. Good Luck.