Today is a fairly good day so far. My heart rate was below 100 when I got up the first time for my 5AM medications. I had my snack so that the prednisone didn't eat away my stomach and went back to bed.
I woke up with the "ax in the top of my head" headache at 9. I never had a headache like that before all this stuff started happening to me.
Scott went for a haircut and brought back my favorite Iced Mocha. Since my sister-in-law is planning to come help out this afternoon, I got the bright idea to try and get some clutter out of her way. That resulted in racing heart and shaking like Michael J. Fox.
After a rest I decided to get dressed. Scott will assist with my shower before bed so just washing up required another long rest. I was gasping for breath before I got my pants halfway on and had to lie down. At this point I am so sick that Scott gets me a shirt and socks and finishes dressing me.
If you just see me, you would never realize I am so sick. You would probably think I am just fat and lazy. In reality, I can't even enjoy most of my hobbies. I rarely am able to spin. It takes too much energy. Scrap booking and card making are the same because of the going back and forth to get things. I can knit some of the time, but now that cold weather has hit my joints hurt, plus sometimes it is just too much to try and hold my hands up. My hands are wasting away. They are just bone and skin.
If it were not for my family, I would have to live in an assisted living. I never dreamed how helpless I would be. Friends ask me to come have lunch with them and have no idea the feat they are asking of me. Just to get dressed to go somewhere is an Olympic event for me.
Books and my Ipod are my friends now. I listen to audiobooks and read lots of free digital books from www.gutenburg.org. Amazon.com also has several free books for for their Kindle app. We have a Netflix account which allows me to watch movies and shows instantly. I have caught up on several TV series.
I feel like a pet. I do about the same amount of useful activities as Carmen. I know my husband loves me to tolerate all this.
My mom and dad keep me fed. Daddy comes up twice a day while Scott is at work to be sure I am doing ok and have eaten. Mama makes me all kinds of treats.
It is Saturday afternoon and is everyone's "day off". Scott left for a few hours to visit his dad. Mama is gone to a baby shower and Daddy is catching up on the farm with Mike's help. Maryann will be along in a while to babysit me.
You never realize how hard things like this are mentally until it happens to you. Sitting and staring at dust that you just don't have the energy to clean can annoy you beyond belief. You get so angry with your body and it's inabilty to function properly. Your mind still dreams big.
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