Many times sensitivity to light accompanies Lupus, so your migraines maybe part of the 10,000 faces of Lupus...fun, fun.How do you cope with feeling lazy?
This is a hard issue to come to terms with. I, too, was an overachiever in terms of working harder, longer, and faster than most others. (I believe this caused unknown stress on my body for years, later contributing to lupus.) When I was first diagnosed my main, foremost issue was exhaustion. There isn't much worse than sleeping 18+ hours a day, getting nothing done, and not having any clue as to why. 10 years later I still have to deal with feeling lazy, despite having worked all day. Some days I can measure myself against my 'new normal', but some days I can't help but use the old measurements. For instance, this week I had 2-3 big things to do on Monday. It's Saturday, 2 of them are only 1/2 done, the other isn't even started - despite being busy all week, and exhausted by 5 pm.
Am I lazy? By the old measure of "I didn't get everything done", yeah, I'm lazy as the dickens. But by the new measure of "Did I work as much and as hard as I could tolerate without producing a flare?"...well, I was busy the whole time every day, not goofing off...so no, I wasn't lazy. How do I deal with keeping myself in the "not lazy" space -- it's hard. Everyday is different. Mostly a lot of self-forgiveness, and realizing day in & day out, that my body simply isn't what it once was.
This doesn't mean all is downhill. From dx in 2002 til now...it got worse, then it got better, then it got better again. Today I can think of doing 3 big things without going into a depressed spiral knowing it'll take weeks to get them done. Why? I've developed different ways of coping and thinking -- so your feet hurt & you don't think you can stand to teach -- who says you have to stand? Maybe it's a personal "rule", not how life actually is. Who says I have to type for 4 hours straight? Maybe it's a personal rule, and really I need to stop, walk around the house, and get a drink every 30-45 minutes. It's a matter of being more gentle with yourself. Maybe you can't straighten the house in the old 20-minute whirlwind, but you can make the effort to put each item in it's place as you use it, so a whirlwind isn't needed.I wasn't asked to but I planned on making a giant list with every single little detail of last few years. Is this something I should do or will I just get a doctor that thinks I am a crazy person?
Some doctors will think you are crazy, no matter what - that is their personal issue! In the "Lupus Resources" thread from my signature, you'll see some suggestions of the types of data your doctor might want & that you can gather before hand & take along.
I do suggest that you find a rheumy who is versed in auto-immune diseases - I'm not sure I agree with what some of your doctors have told you -- look at www.lupus.org
, find the nearest chapter, then check with them to see what rheumies are active with them -- these are the folks interested in and most prepared to deal with auto-immune diseases.
Also, try not to suggest a diagnosis to the dr - I know you have family history of lupus, but try not to stress it too much -- I prefer to have the dr use HIS brain so that he can go by symptoms & blood work, not have his thinking narrowed by my suggestions. He is the expert, let's utilize his training & experience.
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde