In the interest of "keeping it real" I'm just going to tell you "like it is."
At the moment, I am leading a mostly pain-free but completely umphf-less existence. I have no energy - plain and simple.
Yesterday, we went out. It took me all morning to get ready to go. I bathed, dressed and actually applied some makeup. Not my best effort, but was presentable. Fixing my hair was out of the question, so I opted for a hat - it worked. I needed to get out of the house - but it was exhausting. It's also makes me anxious to be looking for a place to sit so that my shaky legs don't give out and I end up in a crumpled mess on the floor. I haven't fallen yet, but I'm afraid I might.
When I move around the house right now there's a lot of stopping and resting in between little chores. I am able to get down and back up the stairs 3 times during the course of the day. Today I will try for 4 trips down and back up the stairs.
If I didn't truly believe that there is a light at the end of the tunnel, I wouldn't be doing this. I found out recently that I have a 3rd cousin with lupus who is also on Benlysta. She and I have never met but our stories are so similar. I have recently been in contact with her by email and have gotten some very encouraging support from her.
She started having infusions in October of last year. She also experienced this total fatigue that I find myself in. However, at the 5 month mark of her process she said that she felt "good" and that at the 7 month mark where she finds herself now, she feels "GREAT!" She is encouraging me to hang in there - eat healthier - nutrition seems to be a big factor here, journal everything that I do and let the Benlysta fill me back up. I am at just the 3 month mark now so I need to be a little more patient.
There are GOOD and GREAT days ahead! I'm getting ready....
