I've been home for five days now. The first night at home was very miserable. I had been in a hospital bed for days, so when I spent several hours sitting in a wheelchair for my little man's birthday, I was hurting. But, I was so excited to be home I didn't really notice until bedtime. When it came time to be still I realized how bad my feet hurt...which led to a sleepless night.
The pain in my legs has let up some, but my feet continue to ache, burn, freeze, tingle....you get the point!
I'm using a walker to get around from one room to another, but for the most part I'm in a chair with my feet above my heart. You would think it would be a nice break, but after a day of it, I was ready for something a bit more entertaining than watching TV. However, I quickly realized I'm not quite ready to go much farther than the bathroom!
After being home for 3 days I decided it was time to try and walk without my walker. I was able to walk across the living room. I was extremely uncoordinated and shaky, but it felt good to prove to myself that my feet still work....a little.
Today is day 5 of being home from the hospital. I have not started therapy yet, but I talked to my neurologists office today and they are working with my insurance and getting it set up. I'm anxious to get started. I'm doing stretches and trying to push myself a little at a time at home, but I know once I start therapy I will be able to progress faster. So far, I've felt like I have improved a little each day....until today. I'm not sure what caused the struggle, but my knees just didn't seem to want to let me move today. I haven't tried walking on my own in a few days, I've stayed on my walker anytime I get up. But today even my walker wasn't enough to keep me up. I fell in the hall on my way to the kitchen this afternoon. I was walking just fine, and bam...I'm on the floor. My oldest son came around the corner and said "Mom, where is your phone? I'm calling Dad!" I was able to get up on my own, so we didn't have to call in help! It happened three more times before my husband got home from work, so I decided it was time to sit down and stay there!
I was extremely frustrated because I felt like I was getting worse instead of better. But, after calming down I realized that I'm going to have days like this from time to time. I know it doesn't mean I'm not getting better.
I want to record/blog about the good, the bad, and the ugly things I experience with GBS because it could be helpful to others who are going through the same thing. When I first heard I had this syndrome I searched and searched for information. I found several blogs and stories of people who had GBS and it was helpful to read how it impacts everyone so differently. Initially, I wanted to start this blog mainly as an outlet for me, this is a way for me to express how I'm feeling at each stage of this journey. I also want to be able to look back and have record of my progress. But, if I can also help other people by telling my story, then that is just an added bonus!
Tomorrow is day six of being home from the hospital. I am hoping to have a better day and stronger knees!
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