I worked mostly part time. When I was first diagnosed, it was hard to do anything. But, as I was better controlled, it was easier. I also do a lot of volunteer work and put in a few hours a day on my days off. As well as housework and caring for the children. Now, I am retired and do about 40-50 hours of volunteer work each month. I think that working full time would be difficult for me as my job was very physical. I certainly would not have been able to do the volunteer work and also would have needed help with the house. I sure understand your need for independence and would encourage you to work as long as you can. It will put you into a better financial place in the future and enable you to keep better insurance benefits. I wish you luck.
Mary An

Thanks, I talk to one of my docs tomorrow and then we'll see. I worry about relapses and I hate this disease because its so unpredictable. ugh.

I am in remission, which is why I haven't posted recently. For me, the illness has come in three big waves, once as a teenager (high fever, muscle pain) again about four years later (pericarditis) again in my early 50s (blood clots in my leg). Somehow, I got through grad school and got a job, and then I think the fourth wave of symptoms was coming on (muscle stiffness and pain, exhaustion).

Then I started using CBD, which is not legal in all states and does not work for everyone. Also, I've always wondered if my symptoms were more easily controlled because I'm a guy, I don't know... some men have terrible symptoms, but generally, fewer men get MCTD and I think the illness is milder.

Here's another option: Find a full time job that's not a 40-hour office gig. I work about 40 hours, but only 25 of them are in an office; the rest is paperwork and case management I do at home.

If I get tired in the late afternoon, I can take a nap. (Since the CBD, I can meditate instead of nap, or only nap for 40 minutes or so and wake up feeling better, instead of feeling like crap.)

When I quit drinking and smoking weed, my symptoms got WAY better. Unfortunately, after about six months of sobriety, they started to get worse-- I was probably getting a little CBD in the weed, but way too much THC! And it would take about six months to get out of my system. Symptoms then got steadily worse for the next two years, and I was headed to a bad place, I think.

I have been in AA for almost three years, and now take CBD in pill form (under the supervision of a real doctor, not some quack in a pot shop, and my sponsor from AA.) I am in nearly total remission now. Quality of life is excellent. I am into sports, stamina is suboptimal, but way better than I ever imagined it could be.

after I was Dx'd I wasn't really able to work because I started on oxygen soon after and with the stress of everything I was flaring all the time. Most of my mctd is lung related and has been steadily getting worse over the last year. I was very stable for about 8 years so I can't complain too much. I'm up to 5lpm of O2....which is from 3lpm since last year. My brain doesn't seem to work well enough that I would be able to hold a job.....lol

I found that I too was exhausted while trying to work. I had difficulty sitting for long periods of time due to tailbone pain, and my memory started going which is really frustrating at work. I have finally decided to stop working. My last day is this Tuesday. I'm 54, so I've been working my whole life. I'm hoping more rest and time to deal with this disease will give me a better quality of life.