These words are my daily reminder right now that despite my body not feeling like my own, I am still me and I need to let that tiny inner light keep shining. These past few days have been challenging. I really hate being negative but my friends have told me that it is just as important to share the bad as it is the good. My fatigue levels have been ridiculously high throughout the weekend and I don't seem to be making progress.
I went for a walk on Sunday and it was the same walk I did with my mom last Sunday, a day after getting out of the hospital. This week I had to rest at three different park benches in order to make it home. I was really frustrated that my fatigue felt like it was getting worse instead of better. Then when I got home and laid in bed every muscle in my body started to throb and ache in severe pain. I wanted to go to sleep but the pain was too much. Eventually I took an over-the-counter sleeping pill and Doan's and was able to fall asleep an hour later.
Monday morning I had to go to Dana Farber to pick up my B12 injection and actually had to sit on a bench until the light turned red to cross the street. I felt so completely pathetic and my right foot kept scuffing the ground when I walked like I was regressing. All my muscles ached like I had a killer workout with delayed onset muscle soreness. I pretty much stayed on the couch all day long once I got back home. Then when I was lying in bed about to go to sleep both of my arms went numb and had tingling pain in them. I took a sleeping pill again.
Today I felt a little better. My muscles didn't hurt as bad and I basically only remembered I was sick whenever I stood up to do something and my body felt like a limp noodle. This was much better than feeling so terrible all day but every time I tried to do something it felt like a cruel joke that my body was playing on me. I went to physical therapy and we looked at the pattern and every time I have physical therapy I am completely fatigued for the next two days. Our plan is to cut back on our already minuscule routine. This just frustrated me more. I went to the grocery store on the way home and my right arm went completely numb when cashing out. It was the first time this has happened when I am out of the house. I was able to drive home but have completely lost my appetite as I'm feeling very stressed.
I keep trying to deal with this as I would with a normal body and that approach isn't working. I keep thinking I just need a routine - just a few simple exercises and a walk every day and I will get stronger each day - but that isn't happening. I am not getting any stronger and there have been no signs of improvement. I have spent just as much time out of the hospital now as I spent in the hospital. Maybe I was subliminally hoping that is how it would work - equal times of sickness and recovery and perhaps that is why I feel disappointed with my lack of progress. I feel stuck. I can't go anywhere because I don't have the endurance to do anything. Even driving to Cambridge seems overwhelming. I am not gaining endurance and my physical therapist says 6-8 weeks before I even start to see an increase in strength. I just feel a little discouraged and lost today. I know I will learn so many lessons during this journey but so far the common theme feels like I need to let go and surrender.