Approximately 10,000 of the 400,000 people in the United States living with MS are under the age of 18. Because of this, making connections with other teens is very hard! As of right now, I am the only teen in Minnesota with MS registered with the MS Society. I am sure there are more out there, but I just haven't been able to find them. Part of the purpose of this blog is to help others connect with each other.
This week, I am in Rhode Island at a camp only for teens with MS. It is such a unique opportunity, and great way to meet others. This program is provided by Stoney Brook, out of New York. We all arrived yesterday (Sunday). In total, there are 9 first time campers (under 18, all have MS), 8 peer mentors (returning campers, older than 18, all have MS), and 11 staff members (many of which have MS). Tomorrow (Tuesday), 15 returning campers will be joining us for the remainder of the week.
As said before, it is very difficult to find anyone to compare stories with, share experiences, or just talk about challenges. I have found throughout the day today, and through talking with others here, that we share many of the same challenges. For example, I have needed a reduced school day since my symptoms started. This is very unusual at my school, and not many of my peers understand that I need the extra time throughout the day to rest. If I do not rest, I will not make it to school the next day, will not complete my homework, and will likely get sick. So far, I have met two other campers who also take a smaller load of classes to manage fatigue.
Another example, is fighting the heat. Heat is one thing that can make MS symptoms worse. The heat affects me by making me tired and dizzy, which can take a long time to recover from. Nearly every person here is fighting the same battle with the heat. Of course, we are in Rhode Island- hot, humid, and muggy. Fortunately, we are staying well hydrated, and are taking breaks often (usually in the air conditioning!).
This morning, we spent a few hours taking part in team building activities. Some of these activities really challenged our abilities, and some pushed us outside of our comfort zone. One activity included jump-roping. I continued to jump-rope as everyone else passed through the rope without getting touched. Unfortunately, the amount of energy I used to jump-rope, resulted in extreme fatigue. But, I was able to go inside, get some water, put on my cooling vest, and rest until I was well enough to join again (it only took about 20 minutes).
This afternoon, was spent at an indoor rock climbing facility. It was exhilarating to watch everyone work so hard to overcome their fears, push through their issues with balance, and cheer each other on. One of the campers has strong challenges with balance. However, he was climbing the wall every chance he could! He made it to the top a few times- shaking the entire way. He was working so hard; one step at a time, one rock at a time, as the rest of us cheered from below. He was so proud of himself for reaching the top, as were we!
My free time is nearly over. I will write more tomorrow about my experiences at camp. I am excited to share my stories and observations throughout the week
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