March 7, 2015

Do my eyes droop? Yes and no. Lately I haven’t like many pictures of myself because I didn’t think I looked very alive. Every now and again when I had my concrete leg days I’d take a picture of myself in bed. Usually I’d delete it because I looked so bad, but the common theme was more my jaw looked hard. My face looked expressionless even when I tried to smile. My right eye droops a bit, but I think it’s hidden well beneath my glasses. Of course me being who I am, I blamed my sudden fuzzy or double vision on needing new glasses, and resolved to go to the optometrist one day with my son, who has never been to the eye doctor. But of course I was also too tired to actually get to the doctor. I’m not sure why I refuse to use the word fatigue instead of just tired. What I experience is not just tired. Tired doesn’t mean you lay down after your morning shower. Tired doesn’t mean you do dishes in 3 goes while sitting on a kitchen chair. Tired doesn’t mean laying down underneath your desk and hoping no coworkers see you. Tired doesn’t mean going to bed at 8 and sleep until 9 on a Saturday. This is fatigue, which is a symptom of a medical problem. I’m not sure if I didn’t want to believe I had another problem or if I just couldn’t believe it, but not accepting that I was fatigued is a sign.

My Mom implored me to try to work through a fear I told her last night. It’s a big one and she’s right in saying I have to address it and cast it aside. It will harm me if I continue, so here goes. I’m afraid it’s my fault I developed myasthenia gravis. If it was caused or exacerbated by a virus, if I had just gone to my family doctor sooner could I have avoided getting it? If I had taken care of myself more and not gotten the virus in the first place could I have avoided it altogether? I feel guilty for getting it. Sometimes I feel like my bad choices and bad decisions with my health and pushing through is what got me into this mess. I don’t want to hate my body because, even though it attacks and kills itself, it has also done some pretty wonderful things.

My victory for yesterday was making my own coffee. I had my husband bring me the coffee filter we use for camping that fits into a mug and you just pour boiling water over it. There’s a kitchenette in this ward and I can wheel myself over to it. It feels great to be able to do that for myself again. Because of my love (read: utter dependence) on coffee, it was one more thing I had to rely on other people for. I’m slowly gaining my independence back. It’s so strange to go from being a mother and part of the workforce, with a very physical job at that, to suddenly relying on others for everything. I avoided peeing because I needed help. I had to be lowered into a bathtub on a machine to get clean – and even that was better than when I could only handle a sponge bath. My husband and mother had to put my socks on for me. It took me an hour and a nap to get dressed. When I think of it that way I can understand why the physiotherapists are happy when I walk 7m with the walker, but it’s still hard to not compare myself to what I was before February 12, 2015. I do believe I’ll get back there, but it’s harder and harder to believe it’ll be as soon or as easy as I would like. I’ve been too afraid to ask for timelines. I think on some level I know what they are, but I just don’t want to hear it. It’s somewhat like the diagnosis. The neurologist knows it’s myasthenia gravis without the results from the tests, but I still have a hard time committing to it without some more confirmation.

I miss my son so much. He’s getting older and bigger. I’ve started talking to him on the phone more since visiting, while wonderful, really screws up his daily routine. He really thrives with routine and is a much happier and well behaved toddler when he gets to bed on time. Yesterday he was sick with a fever and diahrea so he couldn’t visit. I so wanted to just drag myself out of this bed and run home to take care of him. I wanted to be the one to hold him and give him Tylenol and a completely unnecessary bandaid on an imaginary boo-boo. I wanted to take his temperature and make him soup and get him to drink water. He’s my baby boy and no one takes care of you like your mother. Thankfully, I know he still got wonderful care, since my own mother was the one looking after him. I was sick a lot as a child (notice a theme?) so I know first hand how good mom is at taking care of a sicky.

Yesterday I started my first round of immunoglobin therapy, which is basically an infusion of healthy anti-bodies from healthy blood donors. I’ll try to write more about that later. I’m starting to tire and I need to save some energy to eat. Oddly enough, eating and digesting takes about as much energy as my physio does.


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