March 16, 2015

Today was my fourth day home. I had told myself and my family that I wanted three days to sleep and relax and just recover, and then I’d start working on getting stronger. So today I did just that. I started my day off with a bath, which actually takes far more effort than a healthy person can imagine. Before even getting into the tub I had to factor in what supplies (shampoo, conditioner, razor, etc.) I’d need once I made it in. I still forgot my soap and had to look longingly at it up on the shelf before I decided to ask my husband to come pass it to me. Then I had to make sure I wasn’t going to need to go pee once my feet hit the water, which often happens with me anyway. I put bath salts in the water since, if I’m going to all the effort to have a bath it might as well smell great and make my skin soft. My energy was waning already by this point, even with a coffee in my hand. After I got in the water it was wonderful though. My legs felt lighter, although I found I still put my knees together and twisted my hips so I could lay on my side. I’m not even sure why I’m doing that all the time but it just feels natural at this point. In the water I watched as my legs twitched and sent small ripples through the water. I remember watching that before I was diagnosed with Addison’s, and being scared that I may have Multiple Sclerosis. Myasthenia Gravis certainly never made it onto my internet searches. I would have liked to stay in the bath all morning, but I knew I had to save some energy to actually get clean. I pushed through and managed to shampoo and condition my hair, and wash myself with soap. Somehow I made it into a standing position and wiped myself somewhat dry with a towel. I should have brought my robe with me so I didn’t have to dry myself completely. With my last ounce of strength I hobbled over to my bed and lay down for my after shower rest. My husband came to check on me and dried my legs for me before covering me up with my blankets.

This is fatigue. If you’ve never experienced it before, consider yourself fortunate, and never judge someone who has to live with it. It is not because you’re lazy. It is not because you’re not trying hard enough. It is not for attention. It is purely because everything is difficult and takes too much out of you. I remember crying to the nurses after childbirth, when I was undiagnosed with both Addison’s Disease and Myasthenia Gravis but was going through some sort of crisis as a result of hemorrhaging, that “I just have nothing left. I’m not usually a whiner, but I just have nothing left.” That’s what fatigue is. You’ve dug into your reserves and found nothing. You know that there’s just nothing left to be found at all. You used it to get to where you are.

The rest of the day wasn’t too bad though. I didn’t do all, or even most, of the things I had promised myself I would do today, but I did accomplish some things. I got my son’s laundry together and folded it once my mom had washed and dried it (my washing machine is in the basement, so it will be a while before I can do laundry from start to finish). I made my own smoothie for lunch, and made a pot of coffee. I walked as much as I felt I could without letting my knee give out on me. I played trains and mini-hockey with my boy. I went back to bed for a couple hours after a friend visited, but couldn’t fall asleep which I actually take as a good sign. My mom said a few times today that she was surprised at how much I was doing, and cautioned me to take it easy. I did okay today. This road back to normal may be longer, bumpier and have a bit more twists and turns to it than I’m expecting, but today I did okay.

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