Yesterday was terrible, and the day before not much better. Really tired, and the weakest I have been since getting home from the hospital. Used my walker a great deal of yesterday and the day before. Today has been better. I dipped further into discouragement this week than at any point so far. Managing and living with this disease moment by moment is just really frustrating, I won’t lie.
In the hospital, both my adrenaline and my spirits were high. I knew I had five days there, and I pumped myself up to handle whatever was coming in that five days, and I did well. Home is different. It’s normal here. Days seem to drag on. I never know what I can and can’t, should and shouldn’t, be doing. I feel really overwhelmed much of the time, unsure of myself. I would be lost if I couldn’t talk to my PT three times a week and get guidance on how to handle this stuff. Even meditation is different. Because I am so much more agitated here at home, it is harder to quiet my mind. By the way, that is a sign that I need it more, not less.
Two-thirds of my healing is already behind me, but this last one-third is going to be rough. I told (my daughter) Kyra the other day, “I feel really disabled today.” Still struggling substantially with some MS-related issues that are just too personal for (even) me to talk about, not to mention all the obvious ones, and it’s beginning to wear on me. Pain has become a pretty major factor this past week and of course pain is always demoralizing.
Last night Christy took me to dinner and it was one of few times that she and I have been able to just spend some quality moments together since I got home, and it lifted my spirits a lot, as time with her often does. She’s so in my corner. I got to apologize for how selfish I have been. All I can think about most of the time is this damn disease.
Overall, this was a really low week for me both physically and emotionally. I almost feel bad writing this, as I know everybody wants to get only good news, and I feel a little pressure (not from any of you but from myself) just to write positive things from here on out, but that’s not the journey. My commitment from the beginning was to be honest — with you and with myself. So just keepin’ it real.