Before diagnosis it was so hard to take care of my second baby. I recall many times giving her a bath and not being about to get her out. I could not lift her, and not because of my muscles, but because of the connective tissue disorder. I recall holding under her arms and pulling her out. She was good for me and must have known I couldn't lift her, but she couldn't get our herself, she could barley sit by herself.
The stairs were a nightmare to climb, I usually crawled up them when no one was around. The times when we had company, I would go up last and pretty much pull myself up on the railings, or I would just not go up at all. I tried to move as little as possible. If I sat still, and only moved my upper body, I was pain free.
With connective tissue disorder it is like the muscles are working against each other. This is how my doctor explained it. When one muscle flexes, the opposite has to relax, but mine didn't. Every time I tried to move my leg at all, every muscle in my leg would flex, or tighten. I found it much easier when sitting to lift my leg with my hands. It became habit. I crossed and uncrossed my legs by lifting my leg with my hands. My right leg was 2 inches smaller than the left one.
The baby room was upstairs and once I got her out of her crib, I would sit her on the ground and pull her down the stairs with me. I couldn't go down the stairs while holding her, I needed my arms to carry my weight using the rails, or to go down on my butt with my baby.
During the day I had her sleep in a pack and play in our office for naps. I only went upstairs when I had to. I kept her clothes in my room as well. Anything to ease my pain was worth it.
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