It's interesting reading how others manage their days. I think you brought up a great topic.
My days usually start around 8am. I try to get at least 10 hour of sleep at night. Like Lynnwood, I can usually tell in the first couple of hours what my day will be like.
For pain. I would rate myself on a scale of 4-6 out of 10. The only pain I have is my neck arthritis and shoulder tendonitis. Otherwise, pain is not an issue for me. I know, it's weird. So on the really bad neck days, the pain can be 8 or 9. I'm a walking zombie those days. Headaches, muscle pain, total immobility to move my head. It's a mess. Days like that happen about 5 times a month. I do nothing those days, unless it's a very important medical appointment. Or I have a wedding to shoot! Then I have to suck it up and just do it. Not fun.
I split my days up. I do one major thing in tha a.m., then one or two major things in the afternoons, then one major thing in the evening (sometimes). That's when I'm really busy with work, doctor's appointments,etc. If I can get 3 or 4 things accomplished in one day, I've done really well! On my slow days, I take advantage of just staying home. Sleeping in. Maybe doing a little house cleaning or a load of laundry. But nothing major at all. I try to get on the illiptical for a bit, or do some pilates. But I enjoy crapping out on the couch with a mug of tea and the t.v. remote, or a good book. And my cat on my lap of course!
Another thing I like to do that is relaxing, is take my camera and do some landscape photography. I'm only a half hour from the mountains, and the drive is peaceful. So if I have an afternoon with nothing to do, I might do that.
I pretty much keep my evenings open for relaxing with my hubby, or having meetings with clients. We're not big socializers. So that helps balance my day by knowing that my evenings are quiet.
Trying to balance my life right now is hard. I had 15 doctor/medical related appointments in January alone. Plus my work, home, etc. It was a hellish month. Not the norm. Balance will return soon I hope!
From what you described as your normal kind of day, pain, etc, I think you fall into the same category as all of us. I know I'm flaring when that butterfly rash appears, and I feel like I have the flu all the time..... If you can hit the flare hard and fast, it can be short-lived. It's recognizing a flare from your normal daily way of feeling. Do you get your blood tested every month? CBC, ESR, GGT, ALT, Alk Phos, ALT, urine? I get that done at the beginning of every month. It's a great way to catch a change in your disease activity before it gets out of hand. I think that is one of the reasons why I can keep my lupus fairly quiet all the time.
Have a good day Hippi, prayers are with you,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus