I apologize for the LONG delay in updating my blog. I've been really busy, sick, and in the hospital most of the time for the past three months. I just got discharged after a 30 day stay which started at Hershey Medical Center for two weeks and ended after a transfer to the University of Pittsburgh for an additional two weeks.
You know the saying "your eyes are bigger than your stomach" meaning that often people put more food on their plates than they can actually finish eating because so much looks good? My mind is bigger than my body. I tend to put more on my to-do platter than I can actually finish. The good thing about being this way is I am HIGHLY motivated to not stay in bed or stay at home when I have an opportunity to get out. I like to make plans to do things. That's healthy...to an extent. Staying in bed too much makes me depressed and then I feel worse. The bad thing about being this way is, even though it's healthy to be out and active, I also have a tendency to NOT pay attention to my body. I follow my mind and desires and then I physically overdo it.
I promised myself in the hospital that when I got out I'd modify some things and not try to do AS much because I physically wore myself down. I think that's partly why I was unable to fight off so much stuff. Unfortunately, I'm not very good at taking things slowly and just jump back in to everything. I tend to just run and run until I hit a brick wall that forces me to stop, like the hospital or a complete physical crash. I think I am going to have to chop out some of my plans out this weekend, although that is a really difficult thought for me because I want to do everything there is to do! This is the result of years of being totally bedridden before my transplant and almost losing the opportunity to do ANYTHING or to live life at all. I'm grateful to be alive and just want to be a part of everything and live life to the fullest. Sometimes I tell myself I will kill myself at this rate doing so much, but I would rather die as a result of having overdone it than not having done it at all!
I'm tired today. I'm tired every day. I have lost a lot of stamina from being in the hospital which I am trying to build back up, but even then, I've been tired every day for years. Not just your typical "it's part of life" tired, but tired to the point that everything I do takes so much motivation and effort. I always have to put so much effort into putting my mind over my body to get even the most basic things accomplished. I don't understand why sometimes I can't even lean down to pick up a piece of trash I dropped on the floor, or why opening mail and reading it takes so much effort, but I just don't have enough energy for the simplest tings like that. It makes me feel lazy. I know I am not lazy. I know I am fighting a tough physical battle, but by society's standards, I appear to be lazy because I just can't do things that seem so simple sometimes or I do them very slowly.
Most days it is so hard for me to get out. I may "look good," but I put a tremendous amount of effort into just getting a shower in the morning, or the night before since I have to plan out all my events for each day to conserve "spoons," (read the spoon theory at www.butyoudontlooksick.com). In fact, sometimes I just spray myself, put on lotion, wash my face, change my underwear, and throw on a hat because I haven't had enough energy to shower for three or four days. No one has any idea how much effort I exert while out just to try to be and "appear" as normal as possible. While I look energetic and and enjoy every minute I am doing something, I am also very aware that I am putting out twice as much effort to look and feel that way than someone who is healthy. It often takes so much energy just to think enough to carry on a clear, reasonable conversation sometimes. Concentration is difficult, so I also tire out mentally very quickly because it takes so much out of me to focus. I need a full day off in between every busy day out. I have trouble returning phone calls because I get tired talking on the phone much. Recently, I've even had trouble keeping up with tasks I used to be on top of like ordering my meds or other medical supplies on time, putting planned events on my calendar, or keeping track of my life in general.
I wish I knew what it was like to be exhausted because of a full week's worth of work. Instead, I feel like that after just one day. Even if I feel pretty good while I am out, I always get home and collapse into bed. Sometimes I don't even have the energy to change into my PJ's, or I have to do it, literally, one article of clothing at a time while laying in bed. I can't imagine coming home, cooking dinner, cleaning up, having kids to take care of, and go out with friends and participate in other social or volunteer things. I wish I knew what complete physical exhaustion from that was like.
