Saturday

Saturday was hard. It's early Sunday as I write this, and I am glad that the day is starting fresh and hope it will be better than the previous one.

Physically I had troubles. My main problem right now, is that at rest I am breathing quite well, (this is not the problem) but do very poorly when I stand or walk. Or do anything while standing or walking. Going to the bathroom is fine, but washing up in the bathroom is hard. I tend to get tired after about 5-10 minutes in the bathroom standing. I wash my face, hair, and brush my teeth (which is this crazy thing I do only having a sink to work with) and I pretty much ensure that I can't do anything else in my day. My lungs often burn after so much that I end up taking more pain killers. My legs give out at that time also, my knees twitch and quads shake. I have been back on my leg routine here at St.Mike's, even though I can't get myself to TGH to do physio, but I have lost strength during those 2 really sick weeks. Anyhow, since I like staying clean and find it's something that makes me feel that much happier in here, sometimes I over do it and pay the price later. Yesterday, I thought I felt better than I did. I did the full sponge bath routine in the bathroom, washed hair, creams, lotions, the full bit. I can get it all done on 15L oxygen blasting into my nose in about 15 minutes. I wash thrilled with myself after. I felt good and clean and smelled like all my favourite products (little bit like home). As a result however I ended up sitting down back in bed and having a coughing fit that ended up in an 'episode' - I lost my breath and could not breathe and it was painful and scary. I used my Bi-pap to get myself back, but I hate having those. Oh, they are awful. The rest of the day I coughed up fresh blood.

Emotionally yesterday was also hard for me. I was not in the best place. All day. From the time I woke up to the time I went to bed. I missed Scarlett so much I can honestly say that my heart hurt. I felt a longing for her that I have not yet felt, and found it hard to think of anything else or be positive. I never really went to bed. I slept here and there, waking up after strange and unsettling dreams. I realize that the steroids have a lot of input here, why I can't sleep and am emotional and 'different', but I am shocked how quickly I am feeling these side effects. They are not easy to live with. I am shocked at how not easy to live with they are. Since I will be on these for the rest of my life post-transplant, that got me more unhappy and depressed as the day went on. How do people live like this, I thought?! I realize the doses come down, and I'm sure my body will adjust, but right now things feel like too much. The bleeding did not help in calming me down. I'm on every treatment we can muster, and my lungs are bleeding. I feel like these lungs can't come soon enough.

I hope today is better. That I am able to sleep and rest and have no more bleeding. I was told that I can go home whenever I want to bathe and just be home. I live close, so they let me do this. But I don't think I can manage it. Even if we use a wheel chair to get me out of the hospital, how will I get inside the house, up the stairs. These seems like impossible tasks right now. The doctors are leaving it up to me, knowing you can't be in here without going crazy, so they want me to get a break. At the same extent they don't know how I feel and want me to make the call about being able to go out. After yesterday, I have no need to leave this room, aside from my hallway 'workout' walk. How the days have changed from when I would do anything to get myself free from this place. Now they would have to drag me out.

I am up early, since I never reall slept all lthat much. Hopeing to finish this post, and go back to bed and wake up in a better place. I have been there for the past few days and would like to return.