Yup, Lupus can be a horrible disease to deal with, especially at first. I lost so much - my career, my business, my social life. Had to close my business (cancel important contracts, lay off employees) and drop out in the very last stages of my PhD. I was a marathon runner.
For me, it got even worse before it got better. I had major cognitive involvement and couldn't even follow a 20-minute sit-com. Slept 18-20 hours a day, couldn't drive 'cause I'd get disoriented at the end of my street, despite living here over 30 years. Couldn't stand for long, couldn't balance on one foot.
Was feeling pretty darn useless, that's for sure! Plus the depression of loosing everything you value in life, your self-worth, etc. And the tiredness from the disease feeds into the depression and you get even more tired! Yes, mental health help in coming to terms with changed life circumstances and medications to help treat the Lupus triggered depression was a necessity.
Eventually I got better. I followed my Dr's instructions and we tried the different medications until we found things that helped. They don't say "remission" with Lupus, they say it goes "quiet". I am lucky, mine has gone quiet. But I will never regain my career, my business, or my PhD, nor will I ever run another marathon. I am content and very grateful that I feel better. I volunteer as I can, here and with older people in my neighborhood. Surprisingly, I've become more a glass-half-full kind of person, and I enjoy plants, animals, and nature so much more. I relish the times I feel good and have energy, I enjoy the naps that I take when I need them.
It's okay to be sad, it's okay to mourn for the things you have lost. One of the best pieces of advice I ever got was to go deeply into the loss for a certain amount of time -- like allowing yourself to weep uncontrollably in the shower for 5 minutes every morning. Then dry your tears and go about
your day, looking for the bright spots as you can.
Hang in there, and keep in touch!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde