Yesterday, my youngest, McKenna and I drove two hours east to The Dalles, my hometown. Almost all of my family still live there, plus the majority of my close friends. It was great to go back and visit. We originally went there to sell raffle tickets and event tickets to my daughters all star cheer fundraisers. The plan was to get there around 11am, and leave around 6pm. We ended up not leaving until well after 9pm. I was, and still am exhausted. I couldn’t just stay the night, because all of my meds were at home. In order to drive, I couldn’t take my pain pill.  It was a tough few hours towards the end, but we managed. 

You see,  I’ve had to learn to listen to my body. Even though I like to ignore that I’m sick, I have to strategize my plans around my illness. I had planned ahead for yesterday’s trip. I knew I had to rest the day before. Sometimes, for bigger events, I have to rest up for a few days to prepare. Then, depending on how the event goes, and what it is, I have to plan a few days, and even on some occations, weeks to recoup. It sucks, it sucks bad. 

Luckily, yesterday I just drove in to town, dropped my dog at the Pink Poodle to get groomed, and stopped at my my bothers house and visited a while. Then we went to my moms for dinner,  and then my daughters to visi. It was pretty low key. I had only gotten three hours of sleep the night before, (I was still pissed about the comments made to me on Tuesday about if I’d just be more active my disease wouldn’t be so bad. I had a rough time letting this go. I deal with so much guilt already, I don’t need other people making me feel like crap too. Plus I was excited to see my family and friends.) so I was very tired by late afternoon. Once we got home last night, I was still wound up, and in pain. I didn’t fall asleep until about 2am this morning, but I had the luxury of sleeping in until 10 am this morning. I am still hurting today, but we made it to the library (aka my new office). McKenna is diligently working on her math, and I am blogging. 

Due to this disease, I do try to plan my weeks with just one or two events. When we have big events, like our recent trip to Anahiem for All Star Cheer Nationals and Disneyland, I rested up for a week, and then crashed for a few weeks after we returned. The same thing happend at a Christmas. Now that I know this, I plan for it.  I just get so tired and fatigued after a big event. I really push myself to be as normal as possible. I want to keep up with everyone. I don’t want to hold anyone back because I have to take it slow. This new way of living has been an adjustment for our entire family, but we are learning to make it work.  

One of the best  things that I have found helpful to help others understand is The Spoon Theory. If you haven’t heard if it, I highly suggest googling it and reading the story. It really resonates with people suffering from all kinds of illnesses. 

I would love to hear from other people how they handle plans and big events. Please leave your ideas in the comments.