Wednesday, July 6, 2011


As I stated in my last post, I've had a setback.  As much as I have to say (don't I always), I won't be able to type for very long at all.  My setback has seemed larger than life today.  Yesterday and today I have had zero energy.  I think I can actually say that I have been more weak and tired the last two days than I ever have.  Of course, with that, comes increased pain as well.  Today, I hoped in my electric wheelchair and went in the kitchen to make breakfast.  I was so happy my 12 year-old daughter was here because I couldn't finish.  My arms were so weak/fatigued that I felt like I could barely hold them up.

I have only moved from my bed to go to the bathroom, fix my meals, and to sit in my recliner for about an hour today and yesterday.  I have also been sleeping a lot more than normal.  I have gone to bed around 8 or 9pm twice in the last few days.  I never go to bed earlier than 10pm, and usually it's almost midnight.  In addition to that, I have been taking at least one nap, sometimes 2 or 3 small ones.  I am the type of person who never falls asleep while watching a movie, especially not at the movie theaters.  When I went on a date with my husband last Sunday night, I was struggling so hard to keep from falling asleep.  We were even watching The Green Lantern.  It's not like that's a slow or boring movie.

I knew yesterday morning that I needed a couple of "me" days.  I decided that for at least 2 days (now I'm thinking it's going to be 3 or 4), I was going to take a break from almost everything.  I have not answered the phone, except for my husband (gotta love caller i.d.!).  I have not hesitated to say "no" to my girls when they, primarily my oldest daughter, have asked to go somewhere or do something with me.  I have not kept busy with research online, which I do on a daily basis, or making phone calls, or any of the other things I do a lot of while sitting up.

My problem is that I still, at the end of day two, don't feel any better.  I am really struggling right now to type this post.  I really hope this doesn't last much longer.  I hope this is just a setback and not my mito getting worse.  It scares me whenever I feel a lot worse.  I'm so worried that it's a permanent change.

1 comment:

Jenn Forkenbrock said...

We won't let it be a "new normal"! Thinking of you and love you very much!