Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

My Health vs. My Paycheck

Sep 07, 2017 12:57 PM

I'm 25, diagnosed with FMS, but still a chance of lymes disease or MS- being tested next week. Going through a flare currently and in addition to extreme pain and weakness in my arms, legs and neck, I'm having horrible cognitive issues. Memory, vision, speech, forming my thoughts/words, etc. I've been dealing with this for almost a year with no relief. Considering taking a step back from my job (at least going to PT). My husband works FT himself, but we really need both incomes. I've hit my physical/mental limit at work, but I'm nervous to even say that I want to quit. Any advice?

Sep 07, 2017 1:32 PM

If you are in the United States, file for SSDI as soon as possible. There is an income limit. In my state it is $1090 a month or less in order to apply. If you make more than that amount, they consider that gainful employment which is a joke.

My doctor had me off of work on medical leave. I did not qualify for FMLA so I got fired. As soon as I started having problems, I filed for SSDI. I did that in December and I am still waiting for a decision and it has been over nine months.

The money is not worth working yourself to death. I went from working full-time to part-time getting fired because my body could not handle it anymore. I had a full-time job but I was calling in 2 to 3 days a week. Then I was hospitalized and off of work for six weeks. That was my cue I had to leave the full-time job. I have had no pay in the last nine months. I was forced to file Chapter 13. But, I am able to take better care of myself now which I couldn’t do while working. My husband is self-employed so I had concerns about losing the income. We have managed to make it work. I have made a budget and stick to it. We don’t buy junk we don’t need. We don’t take extravagant vacations. I think over all, we are much happier as individuals and as a married couple. My husband was most concerned with my health and well-being. So we worked it out.

You have to do what is best for you. 🤗

Sep 07, 2017 2:39 PM

In my state you can't work at all while applying for SSDI. Because you're saying you can't work to apply. But then you can work while receiving SSDI some. So it's all very ridiculous.

Sep 08, 2017 7:42 AM

I agree, the whole SSDI is rough and often unrealistic. I'm honestly not wanting to go the route of disability right now. I believe I can do something, just less- I have a photography business I run from home that would help with income, but I just don't really know how to judge what's right in this situation. I don't want to act off of my emotions or make a decision when I'm feeling my worst(now), and I'm just very nervous about takin a step back from my corporate job, then being without a constant paycheck. On the same token, I'm to the point where I cannot do my FT job properly and it increases my symptoms to be working.

Sep 08, 2017 7:44 AM

I guess my real question is.... how do you know when enough is enough? Especially because I am younger and wanting to start a family soon.
Who has left their job due to their health, was it the right move for you, did you regret it, etc?

Sep 08, 2017 7:51 AM

I left my ft job for a part time job. My fibro fig and pain made it nad at work. I couldn't remember things and people were getting frustrated with me. I would end up taking days off of work and I knew I wasn't the reliable employee I used to be and my boss deserved that. I ended up quitting when my mom went into hospice so I could spend as much time with her as possible. I am married and my husband is a good provider. I have never regretted it. I also have a long time friend who she and I get together and talk about our fibromyalgia, cry laugh etc. she's a God send. I am also a lot older than you and if u are planning to start a family you will need all the energy you can get! 😉 my children are grown and now I have grandchildren.

Sep 08, 2017 7:52 AM

The paycheck thing was something we had to get used to. We just had to do a little
re-budgeting. 👍

Sep 08, 2017 8:52 AM

You can’t buy time or health. I was diagnosed (in my early 20s) with fibromyalgia 20 years ago. I wonder if I had cut back on work sooner and listened to my body I would not feel this crappy now. You should sit down with your husband and work out a short term and longer term plan. Maybe you can feel better working part time or create your own business. Having kids takes a lot of a person. You could be a stay at home mom which is more than a full time job in itself. Btw, I had zero fibro symptoms while pregnant. 🙌Good luck.

Sep 08, 2017 10:31 AM

My ATN started 2 months after I turned 24. I stubbornly stayed at the full time job that I absolutely loved. All the while either in terrible pain and/or dealing with dibilatating side effects from medications. When I finally decided to quit and move back in to my parents house I slept 14 hours a day for weeks and still didn't feel recovered for several months. When I did try to go back to part time work I ended up quitting 2 separate jobs after only a few months each. It wasn't until I finally found medications that helped without making me sicker that I was able to keep up even a part time schedule. It is depressing, at 27 you are supposed to be physically capable. I often feel like I am "weak" or "a failure" but I have to remind myself many people would do less dealing with what I do, and I need to be kind to myself. I miss my fulltime dream job often, and I think lossing that job and my independence was harder to deal with than the pain. But if I didn't move home I never would have met my husband, so that is a major plus.

Sep 08, 2017 10:36 AM

I'm a firm believer that there is always good out of the bad. It gives me hope. And finding your husband is definitely a "good!" 👍❤️

Sep 09, 2017 10:09 AM

In my state. You can work a few hours and still receive ssdi.. but if you work a lot then they start slowly taking it away. But I do agree if you received it because you can't work. Then you should stay home. Just my opinion.

Sep 10, 2017 12:22 PM

Before I totally had to come off the job, I went on short term disability and worked with my doctor, while deciding what was best for me. This will buy you some time, and still allow you to have 80% of your income depending on your jobs policy

Sep 10, 2017 12:53 PM

@lavin How did you get STD thru employer? I’m still fighting to get STD from the employer that fired me. Apparently since I haven’t gone to the hospital for pain, my illness is not legit. Two physicians filled out forms and certified I am disabled. Not sure what else I need. I did PT, OT, meds, etc. I’m just fed up with fighting to get some help. Just curious how you got it. Thanks

Sep 10, 2017 9:19 PM

@Lavin. That is actually a great idea . I didn't know that was a thing lol. 🤗🤗 Thank you for sharing.

Sep 10, 2017 9:21 PM

@LAT. I hope it all works out for you. 🤗🤗🤗🤗

Sep 12, 2017 4:23 AM

I agree with advice given go to social security and start claim, then get a disability atty for the appeal. You will have to cut corners but you will adjust.

Ready to start relieving your pain?

Join Community