I don't know if I ever really understood "living for the weekends" more than I do this summer. Last summer I worked at an all day summer camp. It was exhausting and sometimes frustrating but I really liked it. I felt like I was getting a lot of fun exercise and vitamin D. Then, I had money to spend during the weekend. I could drive to my boyfriend's house and visit him and I got to spend free time with my friends. I was starting to experience the fatigue, muscle pain and GI symptoms that have since wrecked havoc on my body, but I was still functional. I was still independent. During the school year, I had a busy stressful schedule, but I loved every minute of it. I love learning and I loved all my jobs at school. Weekends were fun, but so were weekdays. I had control of my life.
That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more functioning lifestyle without making myself symptomatic. I have very little dependance since I can't walk confidently on my own. Stairs are still a nightmare and driving is a distant dream. I have less dependence than I did when I was 10.
I'm lucky in the fact that I like my family. I like spending time with them and they are incredibly supportive and helpful with everything going on. But sometimes, I feel like I'm going to suffocate. But then the weekend comes and my micromanaging mother hesitantly hands the reigns over to my best friend, Kate.
Kate helps me up stairs and in and out of my wheelchair. She reminds me to drink more water and check my heart rate. She holds my arm when I try to walk and checks that I've taken my medication on time. But she does it while taking me to the movies, or out to ice cream, or telling me funny stories from her always outrageous life at school. She's my best cheerleader when I make a new improvement and she's the best listener when I start to crack in frustration.
So sometimes on those testing Tuesday afternoons when my migraines kick in and not even Harry Potter can distract me from this reality, I just remind myself of the upcoming weekend.
This weekend, was one of the best. Kate and I met our friend Hannah in Annapolis and went on a tour boat where my friend Caleb works. I hadn't seen Caleb since I left school and it was great to see him and mock his life-jacket uniform. I also found out that since I feel sea sick, lightheaded, dizzy and off balance all the time, boats have no effect on me anymore.
Then, we went to Chick and Ruth's and got a 6 lb milkshake.
That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more functioning lifestyle without making myself symptomatic. I have very little dependance since I can't walk confidently on my own. Stairs are still a nightmare and driving is a distant dream. I have less dependence than I did when I was 10.
I'm lucky in the fact that I like my family. I like spending time with them and they are incredibly supportive and helpful with everything going on. But sometimes, I feel like I'm going to suffocate. But then the weekend comes and my micromanaging mother hesitantly hands the reigns over to my best friend, Kate.
Kate helps me up stairs and in and out of my wheelchair. She reminds me to drink more water and check my heart rate. She holds my arm when I try to walk and checks that I've taken my medication on time. But she does it while taking me to the movies, or out to ice cream, or telling me funny stories from her always outrageous life at school. She's my best cheerleader when I make a new improvement and she's the best listener when I start to crack in frustration.
So sometimes on those testing Tuesday afternoons when my migraines kick in and not even Harry Potter can distract me from this reality, I just remind myself of the upcoming weekend.
This weekend, was one of the best. Kate and I met our friend Hannah in Annapolis and went on a tour boat where my friend Caleb works. I hadn't seen Caleb since I left school and it was great to see him and mock his life-jacket uniform. I also found out that since I feel sea sick, lightheaded, dizzy and off balance all the time, boats have no effect on me anymore.
Then, we went to Chick and Ruth's and got a 6 lb milkshake.
I can barely take any credit for finishing it though; Kate probably drank 4 lbs. of the Colossal Shake. No one was surprised.
We stayed out way too late hanging out at Caleb's house and I spent a good bit of the night getting sick, but it was a blast. Despite the stares and questioning glances at my chair, and even when the ship captain awkwardly and ungracefully wheeled me off the boat backwards, I felt a little less sick this weekend. Today I'm back to starting a week of pt, lab work, and obsessively checking my vitals, but then I'll be back with Kate next weekend.
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