Too Tired Today
Last updated: March 2023
I am a mom to 7 humans. Three that are under 13 years old. One has Down syndrome. He has the mind of a 3-year-old, is non-verbal, and is very heavy. I have to care for him in every way still.
When it rains, it pours...
I was diagnosed with Lupus in December of 2020. That was the worst year of my life. I'm 46. I had pneumonia, 2 months later I caught influenza, and 2 months after that I caught covid 19. When I went to the doctor months later it was because I put on 50 lbs. I slept all day. I couldn't keep my eyes open. I was in pain everywhere. From my ears to my big toe. Just pain. No energy. Restless legs. Dizzy and blurred vision. So when doctor said I had Lupus, now came all the pain pills. I also have hypertension. So I take meds for that also.
I don't look sick...but I feel it
I feel like a fraud, I look in the mirror and I don't look sick. But my body is always in pain. I feel like some days I want to clean the house really well, listen to music! The next day, I'm in bed because I feel like I was hit by a truck. I have 2 grandsons, one is a toddler. I love him so much he looks just like my son. But playing with that little guy for one week while visiting him, boy I retired to my bed and didn't move about for 4 days. But I loved every minute I spent chasing, bending, lifting, swinging him around.
Feeling like a battery losing voltage
I have been overweight my whole life, but I always had energy to run after my kids, play with them, sing and dance with them. It was a wonderful feeling. One that I was unappreciative of. I took for granted all the vibrance, and energy I had in the morning. I felt like I would never run low. But now I am like a battery losing its voltage. Looking back at all the things, errands, and tasks I used to do. I would give anything If I could have that vibrant energy back. With all the medications I take daily, I'm still in pain. I feel my memory slipping away. Unable to think of the words when I speak. The doctor says its brain fog. At the age of 46 I am too tired. "I'm sorry, not today." I'm too tired should be my new name.

Community Poll
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?
Join the conversation