It’s hard to get used to having to choose between all the little things you do in a day that you take for granted. This morning I walked to the shower (behind the wheelchair) and stood for much of it, but because of that it took me longer to recover. I ate breakfast and put moisturizer on my legs and arms too. But I haven’t mustered up the energy to go make myself a coffee, do my in-bed physio, or brush my teeth. Each little activity of sorts costs energy, and it’s hard to determine how much energy it will take. It’s like trying to grocery shop with a shopping list that keeps changing, with a budget you don’t know, and prices that are subjective to outside influence. It should get easier with time though.
It’s a beautiful sunny day outside. The nurse said next week it’s supposed to go up to 18C. Run-off should be starting soon. It’s disappointing to know I’m going to miss it, but I’m still too weak and tired to really care. I pulled up two of my stations online the other day and saw that I’ve missed out on 4 days of data. Then I decided I didn’t care. Work is not where my energy is going, even if I do love my job. The Dr. seems to think I’ll be fine going back to work once the medications get figured out. He even says it’s more manageable than Addison’s disease. I really want to believe him, but the personal accounts I read online don’t really back that up. It seems like some people live a relatively normal life and some people consider themselves disabled. I will always push myself and I will be as good as I possibly can be, but I can’t help but worry about how good that actually will be. This is what I need to be able to do again: https://www.ec.gc.ca/rhc-wsc/default.asp?lang=en&n=9D04D344-1 .
More love and wonderful gestures have been pouring in. Yesterday I had a few visits from friends. At one point I was just so content laying half asleep in my bed. My friends were talking with my husband while my son played trains on my legs. My husband and I don’t “entertain” much per say, but we casually have people over all the time. My house is very relaxed: we offer up the first drink and then you’re encouraged to just get the next one on your own. Most Sunday nights our closest couple friends come over for a communal supper. People know to drop by if they’re in the neighbourhood, and it’s fine if they only stay for half an hour or if they end up staying all afternoon. So yesterday, just having friends around me talking about normal things was really great.
I keep thinking I should announce my diagnosis online since so many people care and will want to know, but still can’t quite do it without more confirmation. Part of me still just can’t believe it, which is such an opposite feeling from when I was diagnosed with Addison’s Disease. I accepted that right away, but I guess with that I had the blood results. Maybe it’s the fear of telling work. I’m afraid I’ll have to be re-assessed by the work doctor to confirm that I can do my job still, and I guess I’m not positive I will be. I have to give myself time though. Whenever I start to think or fear something that’s too far ahead down the line, I have to take a step back and stop. I’m not being fair to myself if I start to worry about that before I’m even out of the hospital! I have to be more gentle with myself.
I do need to stop eating so much dessert though! Since I’ve started eating again I think I’ve eaten mainly crap and sugar. It’s not really fair of hospitals to have mainly crappy meals but great cake. Maybe they’re trying to make up for the rock hard mashed potatoes and mushy carrots, but really? Do I have to add a couple pounds of cake to this body right now?