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?
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.
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.
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?
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.
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.
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.
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.
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
@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