Teen Adventure Camp day 4

Day 4 of MS Teen Adventure Camp was an educational, relaxing, fun, and crafty day. Following breakfast, two professional yoga instructors came in and led us in a 90 minute yoga session. This session was most definitely the best yoga session I have participated in. The instructor was aware of our fatigue, and did not push us to hold difficult positions. Instead, we mainly focused on easy stretches, muscle building, and breathing. I was amazed how relaxed, and energized I felt afterwards!

We split into four groups and rotated to our "mentor led discussions." The four topics were education options, relationships, coping, and knowing your limits. Many of the things people said, were very relatable. For example: some of my friends at school do not think I deserve the good grades, and happiness at school, since I am never there. They think I get everything I want because I am sick. Wrong. Instead, they don't see the work I am doing at home to keep up with my class; the emails I send to my teachers to build relationships and get assignments, and the extra classes I take in order to graduate with my class. Another example is from the "knowing your limits" category. We all have to be sure to find a cool place away from the heat. Or ask our friends to slow down when walking from place to place. 

The afternoon was filled with crafts. Three people from Artists' Exchange came and led the groups in activities including giant Jenga, musical/creative writing, and creating mosaics. Jenga was particularly challenging for some, as we not only had to balance ourselves, but also the growing tower. 

For dinner, we had a "carnival" consisting of a barbecue, and informational stations. There were tents set up from areas such as: self advocacy, therapy dogs, nutrition, humor, accessible sports, and exercising. Some professionals came to share their area of expertise (i.e. nutrition), and some were led by camp staff. It was fun learning about the resources available, and how we can utilize our resources and knowledge. (bubblegum blowing contest pictured below)

Our day ended with a discussion focused around "the box." The Box, is a box of anonymous questions from campers throughout the week. As each question was read aloud by a staff member, campers, mentors, or staff members could help answer the question, and contribute to the conversation. Many questions were related to "are my kids going to get ms?" or "what is the probability that my siblings have ms?" or a lot about genetics. Unfortunately, there is still a lot of gray area when discussing the genetic factor of MS, but research is being conducted. Hopefully we will have answers to those questions in the near future. 

One of the last questions asked, was "If you were given the option to go back and not be diagnosed with MS, would you?" To my surprise, every person answered with a "no." Many explained that their MS helped them grow as a person; they had to become mature much faster. Some questioned who they might otherwise be? One shared how she appreciates her "MS Perks" or accommodations, and many said that Multiple Sclerosis is a 'Blessing in Disguise.' 

It was fun seeing the excitement and passion in the room. Most people participated in the discussion at one point. Everyone was able to learn, and teach to the rest of the campers. 

Teen Adventure Camp day 3

Last night after dinner, we gathered for our "Med Discussion." This was an opportunity for the campers to ask questions about the MS medications available, their side effects, as well as make suggestions for each other about managing symptoms, or compare experiences. It was really neat to see everyone interacting with the group. One person even recommended a neurologist for a girl who is moving! How neat! 

One of the girls in our group was recently diagnosed, and really didn't know much about Multiple Sclerosis. Through this discussion, and many questions/answers, we were able to help her gain a stronger understanding of the disease she is living with. 

What is interesting about this camp, is that we all have some of the same experiences, but we have all experienced them differently. For example, one camper was diagnosed with MS when he was two years old; one was misdiagnosed with cancer before her diagnosis of MS; one went completely blind in one eye; one was diagnosed three weeks ago; one gets dizzy on a daily basis. Each of us has our own version of our story. We were all diagnosed with MS at different ages, different times of the year, different lengths of time, and different severeness. 

We don't look like we have any disease, and are told that all the time. "You look healthy!" or "You don't look sick" or "Really? But you look fine!" are all things we hear. Yes, we are fighting a disease every day of our lives. No, we don't show it. MS is one of those diseases you cannot see. We joked about putting a sticker on our foreheads reading "I have MS" that way it would be visual like a cast on a broken arm.

Today, 16 more campers arrived at camp. These 16 campers are returning campers from pervious years. Many know each other, and all are excited to learn about the "newbies." Of course, the "newbies" are excited to learn about the "returnies" too! Most arrived around 4pm, just as we were returning from a day filled with kayaking, swimming, and sun tanning on the beach.

Dinner was filled with friendships being formed, stories being shared, and excitement in the air. I continuously heard others saying "I'm back with my family again!" We truly feel a sense of family while at camp. At camp, we are allowed to put our MS aside, and be ourselves. Everyone understands when a nap needs to be taken, or an ice back in use. No one has to explain to each other why they may be tired in the heat, or why they have poor balance. We all understand the symptoms of MS, and are supportive of one another. 

Tonight after dinner the entirety of the campers, staff, and peer mentors gathered for a team building activity, which also served as a way to get to know each other. I took a second and looked around the room. It was inspiring to see 33 people under the age of 25 in the same room, all living with MS. We come from all corners of the country. From Alaska, to Florida, to Minnesota, to New York, to Texas, to Colorado, and from Connecticut, to Maryland, and more, all in the same place being able to connect with each other. 

This reminds me of what I want to do. I want to continue to see this group, or other groups increase. Not because I want more people to be diagnosed with MS (of course not! Why would I want that?!?!?), but to connect those who have already been diagnosed. I want the girl feeling alone in North Carolina to be able to connect with the boy and girl from New York feeling as though they don't fit in with anyone. No one should feel alone. No one should feel like they don't fit in. This doesn't only go for people with MS, but rather any person in any situation. Everyone has something similar to others. It is just a matter of making those connections.

I apologize for the repetitiveness of the last couple of posts, and for the spelling errors. You must understand that I am writing these posts after very long, tiring, eventful, and exciting days! And I am exhausted! With that said, I am off to bed. More tomorrow! 

Teen Adventure Camp- Day 1-2

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