Sorry to hear about that, I hope things turn around for you.

Thank you! I have to believe it will be OK. I am not losing everything because of this disease and my sleep disorders. We have worked to hard!

Hope all is well,

Gabrielle

I am sorry your job turned south. I hope you find one that works well for you. Good luck!
Mary Ann

Thanks Mary Ann!

Hello gabpaul,
I am very sorry for your bad luck and I do hope things turn around very soon for the better very soon...
It is very sad when people "use" our suffering from such a debilitating disease like SLE/Lupus/MCTD and turn it around for their own "use" and/or even choose to make fun of our suffering...
I have come across that myself in the past and unfortunately in the present as well ... For example, at the moment - because of my failing health - I am forced to use a dialysis-centre three times every week for my dialysis-treatment and in the centre itself the lights (I suffer severely from photosensitivity and intolerance to artificial bright lights) make my BP rise and that alarms me very much because I have already suffered cerebral haemorrhages and a severe stroke caused by artificial lights raising my BP to go out of control to such an extend that it causes me to suffer terribly...
Now, since I need to use this dialysis-centre three times every week for their medical services, one would hope that the medical staff at the dialysis-centre would know about medical matters like the one's I suffer from, as described above, but unfortunately the staff don't always choose to acknowledge my medical problems and my photosensitivity and that forces me to go through regular uncounted battles because of that... It is well known at the dialysis-centre that I suffer from SLE/Lupus/MCTD and affiliated other diseases... but it is so rare for me to come across medical staff who acknowledge my medical problems and my medical needs because of my medical problems....
For example: one NHS-GP-doctor told me ten years ago when I came to his surgery to be helped in a medical emergency : "with a rare disease like yours you are anyone's game..."... It goes without saying that I have not seen any NHS-GP ever since because unfortunately the NHS-health-service in London does not check-up on abusive NHS-doctors who dare to abuse the trust put to them by very vulnerable patients who are unfortunate enough to suffer from a rare disease like mine. It has even been put to me that on the NHS patients suffering from rare diseases have to "comply with whatever the NHS-doctor demands of them, being it private or otherwise...". Unfortunately nothing is being checked-up on the NHS to assist vulnerable patients suffering form rare diseases and doctors on the NHS can still do as they like and the NHS-patient has no choice because there is no office to complain about such terrible abuse ...
Let's hope that things might get better in the future for all of us...
Best wishes from Kristina.

Really sorry about your job issues. I also had to give up my work and haven't been able to start up again. Hoping in the future things will turn but I'm not pressuring myself. It's amazing how little it takes to set things off for me. Keeping you in my thoughts and prayers.

Sorry about your job. I usually had to had the perfect boss for things to go well for me. For instance, once I had a boss who had migraines and one of my co-workers, as well. My boss never begrudged me coming in late or going home early from a migraine, because she knew exactly how I felt. Later, I just had a very compassionate boss, who gave me leeway on hours. I also had a fair amount of control about what I was working on. So if I feel badly, I did work that didn't take much concentration. And if I felt good I caught up. But it is hard to know in advance how things will work out.

Good luck finding something that works out better for you.

Sorry that you had to give up your job. I had to give up a job I had been in for 11 years due to a similar issue in December. Management changed and the women who they hired was not pleasant to work for and made work a 100x more stressful then it ever was before.

Hopefully you will be able to find something less stressful that allows you to keep your condo.

I am very sorry to hear that too, GP.

I will respond in greater detail when I am not on my phone, but excellent points in this thread, particularly (Ann) about having a boss who lets you schedule work around good days and bad.

I can actually work over 40 hours a week, 25 to 30 at a job with flexible hours plus 10 studying and contract work-- everything from script doctoring to presentations on DV, software documentation, and other projects. None of it pays very well, or what does pay well is not very consistent, but I am lucky that my main job covers health insurance,I have a supportive spouse and a lot of savings-- I am very comfortable now, but if I had been less cautious with money when I was younger, the outlook would be very different.

Sorry to hear about your job situation, and am sending you back some positive thoughts for the future. Hope a new and better job is on its way.

@Kristina1, that sounds awful. I am so sorry. It is true that sometimes you get compassionate bosses and sometimes you get the ones who really don't get it.

Flex hours are always helpful, and they did help for me. When the new bosses came in, they did not understand or care about my history. I still find myself so full of anger and I am working to rid myself of that unproductive waste of energy.

I have been told that they speak poorly of me to my former colleagues and I feel an incredible need to share my side of the story. I need to let that go....... Hopefully, my colleagues won't believe or listen to what the bosses are saying.

Thanks for the advice and kind words!! Gabrielle

Gabpaul,
You hang in there. Stress about work is the last thing you need but please know everything happens for a reason. You did not need to ensure that horrible crap any longer. There is something more fitting for your health & well being out there!! What a jerk of a supervisor you had!! Ass!! Who makes fun of accommodations for someone?? I mean really?? I say you went above & beyond the madness for 9years but never feel you wasted your time. You gained perspective from those 9 years and this will make you that much more determined to advocate for your health needs in the future. Take some time to relax & rest while you are looking for a better gig. If you don't have your health, work will be the least of your concerns... I am learning this lesson myself!!! Take care & I'm praying for ya!!!
Speechteacher

Thanks all for your responses! I took a respite and went to stay with my parents for three weeks. Sleeping is now back to normal (They forced me to wake up every day...) and they helped me process some of my anger. They also made me start exercising again.

They are both psychologists, so they are good at this stuff. Feeling more normal. Just need to find that job!

Gabrielle