I cant count the number of times I have tried to begin and keep up with a blog or journal. Each time I hope that this is the one I can keep current and remember where to find it.
I stay sick so often that I loose track of everything. I have Lupus SLE and Sjogrens Syndrome. They have ruined my life and the life of my family. I stay sick 80% of the time and the quilt it causes overwhelms me. I would love to be able to keep track of my everyday activities to help me find anything that could possibly be triggering the chronic flares. The problem is my health keeps me from ever getting on track with anything.
My husband works 12 hour rotating shifts at the Phillips Oil Refinery. I have an 18 year old son that just graduated high school, a daughter 8 years and a 6 year old son. My eldest just moved out of our home. The youngest two never stop fighting and my 6 year old is hyperactive. He never stops moving.
The loss of my old self is always on my mind. I was a very active person. I worked out 4-5 days a week and had aspirations of becoming a fitness competitor. I kept an immaculate home and took very good care of my husband and children. I did all of these things while I was ‘getting sick’. I just ignored symptoms and pushed through. Until the time came when that was no longer a possibility.
I need advice. Any advice. Those of you who have this illness and live a functional full life… HOW DO YOU DO IT? What does your day consist of? I need help. I have surpassed desperation.