(3rd night home from the hospital) I can add putting my son (3yo) to bed to the list of things I can’t do right now. He totally took advantage of my fatigue, and played me for a fool. He tried to control and change every aspect of the bedtime routine, and I didn’t know what was actually new and what he was lying about. It culminated to him biting me, me having to yell for my husband, and then a massive tantrum. He hit me multiple times, but you can only get away so fast when you need to rely on a walker to get around (the wheelchair doesn’t fit in his room). In the end the boy is in his room, I have a bite mark on my hand, and the Thomas the Train book is put away until it heals. I did get a kiss on my hand, although he was pretty mad when that didn’t mean he got his book back. Also, my husband was the one who finished the bedtime thing, as I had no energy left.
There’s so much grief that comes with a diagnosis of a disease, maybe even more so when it’s a second, third or fourth diagnosis. There’s a point in the process where you blame absolutely everything on the illness. Three months ago our son just would not go to bed. He was absolutely awful and the bedtime process took a couple hours and involved many tears on both sides. I took to referring to my son as “my little a-hole” whenever I talked about it. We tried everything to get him to go to bed well again and in the end it was stickers as a reward for going to bed well that got him to finally snap out of it. My point is though, there wasn’t a time through all that where I believed he wasn’t going to bed because of my hypothyroidism or my Addison’s disease. It was only because he was a three year old and three year olds suck sometimes. Tonight though, in my head and heart at least, me having Myasthenia Gravis is why he wouldn’t go to bed. Me leaving him for a month to be in the hospital, no matter how hard I worked to stay alive during that time, was the reason for the tantrum. Everything that happened tonight was the fault of me having Myasthenia Gravis. It goes to show how you can really get hung up on blame. But when you blame the illness you relinquish control yet again: you let it gain more traction in your life.
Today was my third day home. I slept the first day, most of the day, and it was great. I didn’t have to feel like anyone was judging my progress or thinking I wasn’t being positive enough. I didn’t have to tell anyone about my bowel movements or get my blood pressure taken. No one took my temperature, which was the biggest thing I hated in the hospital because it made me feel like such a baby. I slept for much of my second day home too, but I did accomplish one task. I had a mason jar on the counter filled with vinegar and orange peels because I had wanted to make my own cleaning spray. Yesterday I drained it through a coffee filter and finally finished it. Let me tell you, after 6 weeks of soaking, that’s some nice smelling vinegar! Today I slept in and took a nap, but also tidied up a bit, or at least what I could do from the wheelchair. I also emptied the duffle bag I lived out of in the hospital. Tomorrow I start living again. I said I’d give myself three days to sleep and recover before I started pushing myself again. Tomorrow I will get outside. I will walk more. I will clean up after myself. I will spend less time online trying to figure out how to make life work with all these diseases and just figure it out as I go. I will call my employee assistance program and get some counselling before this turns into a major depressive event. I will stop eating so much junk food (even if it is gluten-free).
We’re going to rearrange the house a bit to make things easier for me. Our bedroom is impossible for me to maneuver around. The wheelchair doesn’t fit at all, but even the walker is a giant pain in the butt. I think I’ve figured out how to make it better though. Maybe tomorrow we can figure out how to move it around. My husband is taking two weeks of stress leave. He needs it. Every one of us is going through a major change and it’s devastating for all of us in different ways. At this point he’s smart to rid his life of any stress he can. Life and loved ones are more important than work, and deserve more of your energy.