Mine is always the worst in the morning. I wake up feeling as if I never slept. I did lose my job. I couldn't get to work on time although I tried and then my boss let me come in later but after awhile she let me go. This was all before I had a diagnosis. I thought for the longest time it was just me and I was going a little nuts. Now at least I understand.
Go and talk to your boss and find out what the real reason is that he decided not to be flexible any longer. Maybe others are complianing and they just don't understand. It is avery hard disease to try and explain to anyone. I hope you can work it out or at least find something that will work. Good luck

Isn't it illegal for your boss to discriminate against you because of an illness? Maybe it's hard to prove, though-?

I notice lethargy in the a.m. As well, and have one day a week where I cannot get out of bed until at least noon. This has become a pattern that I'm noticing and I haven't changed anything so I'm wondering about the weather? Im in Ohio and it's freezing here (it's been a pretty mild winter until recently). I'm only working part time the moment, so I've been able to handle it so far. My "crash" days have been off days so far. I have a co-worker with MS and she doesn't start work until 11 am every day. I'm guessing she has the same type of issues and think that her schedule would be optimal if possible. However, she is also part time.
Have you ever looked into FMLA? You can get it because of your MCTD and it prohibits your employer from discriminating against you or firing you. If he did you could take action against him. All that you need for FMLA is to complete the paperwork and have your doctor sign it to confirm your diagnosis. That may be a big help to you! Good luck and let us know how it goes.
Shannon

I'll look into FMLA. Glad to know it is not just me that has problems in the AM. By forcing me to come into an unheated office, my Raynaud's disease is now acting up!

I'll keep everyone posted.

Thanks! Gabrielle

Gabrielle
It sounds alot like your on the right path. My symptoms are always worse in the AM and I Hold off my pain meds till I find out what I need to take, (really bad day vs bad day)
Im sorry your boss is treating you this way but flex time is normally not on paper. So your job specific duties nor your Insurance info will cover it. It is also looked well upon by government agencies as the employer is "working with you" FMLA is a great Idea to buy you time, its what I did after my facility took me from being top ranked to on probation, to protect my job. The question is will this stop before your time runs out? In my job I used self contained breathing apps.(SCBA) and part of my disease involves my lungs. But as far as your job or getting a new one. At your new job will you work for 1 year without missing enough time to cause problems? by taking a new job you lose your FMLA until you meet their reqs. Basically when it became a problem for me, Flares requiring hospital stays or not being able to do my job to its full reqs. I had to go out on disability. I didn't want to, but my options were limited. Just some things to consider.
Back on the morning pains and lethargy, At times i dread sleep and stay up very late because im worried about another bad morning.

Just my story and how it touches points of yours
Robert

You can find information about FMLA on the US Department of Labor's web site at:

http://www.dol.gov/elaws/fmla.htm

In a nutshell, for FMLA protection to apply:
1) your employer must be a private employer with at least 50 employees or be a public employer;
2) you must have worked for the employer for at least 12 months,
3) you must have actually worked at least 1,250 hours in the 12 months immediately preceding the leave (not counting paid time off such as vacation or holidays); and
4) your employer must employ at least 50 employees within 75 miles of your worksite.

Employees of covered employers who meet the eligibility tests will be able to use 12 weeks of unpaid leave in a 12 month period. If they exceed 12 weeks, they are no longer be protected by FMLA. Whether paid leave is available will depend on an employer's leave policies.

If you need more information, the URL above also has a link to a page with contact information for the local offices of the federal agency that enforces FMLA.

Good luck, Gabrielle! I hope things will work out for you with your job.

Thanks all. I have thought about the risks of a new job and being late at times. It is like being stuck between a rock and a hard place. I am so miserable here, but does a new job put me at risk for being fired? I know I would feel healthier physically and psychologically if I were in a different work environment.

The two managers I work for are known for being jerks - it is just that I get it worse because I am sick.

It really makes me so sad and I cry because I used to love this job. I work for an Inspector General and he is wonderful. I am talking with the Deputy Inspector General and our General Counsel about flex time. Essentially, I am going over my managers heads, but I am in survival mode at this time.

Be well everyone!

Gabrielle