Jan 29, 2016 8:57 PM
Welcome to our community Aprilgirltoo! I don't have SLE but I have Sjogrens, fibro, and hypothyroidism, among many other chronic pain issues. I stopped working in 2010 to have surgery for a mass, thinking I'd go back to work, but that's not going to happen. So many things have jumped on board, I strictly take every day one at a time now. Depression and anxiety are constant every day as part of everything else and trying to learn to cope with my new normal.
Unfortunately due to my fibro fog, and memory Lisa/dementia due to changes in my frontal lobe, it's very hard for me to stay focused without forgetting what 8 was trying to do. I get distracted in just seconds. And I use to be so organized, but I'm totally opposite now.
I try to focus to get through my day, by trying to stay on a schedule as if I were working; get up & go to bed at the same time, even when I don't sleep. I only nap if I can't stay awake. I have a room full of procrastinated projects, like taxes, scanning photos, cross stitching, sewing, etc. My psych counselor has me setting up a calendar of to do projects so I can hopefully accomplish some. And I have to answer to her so... I actually have accomplished of of the tax prep. Whew!
When I feel good I try to have lunch with my daughter or hubby. I use to go stay at my dad's but I'm no longer able to drive over 30 minutes one way, due to tremors developed last year. I play with my dog. I Ali in the sun in our back yard, but I won't walk elsewhere due to exercise induced asthma and currently being SOB with activity. I do walk slowly on a treadmill between 10-20 minutes, 3-4x a week, unless I'm sick like now. I watch TV, read, & play tablet app games to challenge my brain. We recently played Scrabble with our granddaughter. I was so embarrassed because I kept asking my hubby how to spell simple 4-5 letter words! It was scary to say the least. My hubby frequently finishes comments to others for me because of fibro fog/brain freezes.
I cook super for my hubby when I'm able, wash laundry, dust, sweep the kitchen, typical light duty chores so he doesn't have to do everything. I don't know if my activities are what you expected, but hopefully others will add understood. Hugs, love, & prayers you adjust and find ways to help you cope with your new normal life! π·ππΌπ
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