Auto Immune disease… What is the first thing that comes to your mind when you hear those words? For most, an auto immune disease doesn’t mean much, but for other individuals it is a serious thing that severely impacts their lives. Dealing and managing a disease 24/7 is hard, but luckily some of us having kayaking to help. I wanted to share how kayaking helps me and others deal with the ups and downs of our diseases and just how much these diseases effect our lives.
My first interviewee was Maya-ray Cross. Maya is an 18 year old from England. She was diagnosed with Elhers Danlos Syndrome (EDS) at the age of 7 and Scheuermanns at the age of 14. EDS is a genetic condition that effects the collagen in the body making the ligaments and tendons lax. This leads to the dislocations any of Mays’s joints at any point through the day. Collagen is also present in your internal organs, heart, stomach etc, so she constantly has stomach aches. Scheuermanns is a condition that occurs when the vertebrae of the spine grow wedged instead of flat compressing the discs. Because of Scheuermanns Maya had to have surgery which left her with nerve damage in her left leg which makes the leg go numb and paddling challenging.
She also was diagnosed with Dyspraxia at a young age which is related to conditions like Aspergers and anxiety. Maya faces many challenges; She faces sever pain daily, but can not take pain killers on days she trains because they make her very tired. She also fatigues a lot faster than most because her body is working 3x harder to keep her joints stable. Maya also says “I need to do the training to build as much muscle as possible, to make my spine and joints more stable, but sometimes due to tiredness or pain it makes this impossible. This creates more problems as I become weaker. When my leg starts playing up, it is less responsive than my good leg so it makes my tricks wonky as I cannot push down with the same force with both feet at the same time. I also have issues getting out of my boat when I can’t feel my leg.”Although presented with so many challenges, Maya uses kayaking as an outlet. She says kayaking helps her feel more normal. People can’t see her disabilities when she’s in a kayak and she says kayaking is great for her physio as well. Staying strong makes her joints more stable and builds her muscles. Plus Maya says kayaking really helps her anxiety by making her face and work through her fears. She says kayaking reminds her she is not just her disease. She says “I’m a person and kayaking makes me feel great, plus I’m safer in a boat then I am on my feet (I fall over far too much).
Kayaking has given me something to look forward to and also gave me something to work towards (such as my next trip down a river or learning a new move in freestyle).”Maya says she wants to inspire others and show how much kayaking can help anyone with auto immune diseases. She says “don’t ever let your disabilities hold you back, there is always something we can do to help or support you. If there’s something you want to do, go out there do it, if it works for you that’s great, if it doesn’t then find something that will. Never let anyone or anything hold you back!”
My next lovely interviewee was a good friend of mine Harland. Harland is an old family friend and I have had the pleasure to paddle with him and his brother since they were tiny. Harland is new to the Type One Diabetes community and I was really excited to hear his views on how kayaking has helped him get through his recent diagnosis. Harland was diagnosed with Type One Diabetes 20 months ago.Type One Diabetes is an auto immune disease that is triggered by an auto immune response that mistakes the cells in your pancreas as harmful and attacks them, which kills off your pancreases. This means your body can’t produce insulin anymore. Insulin breaks down carbohydrates (from food) in the body and converts them into energy, so without insulin your body has too much glucose in your blood. High glucose levels can damage blood vessels, nerves and organs. If left untreated, diabetics can go into liver failure, go blind, and lose limbs.
Diabetics also have to handle low blood sugar. When your blood sugar gets low, glucose is cut off from your brain. This means if you’re low too often it will kill off brain cells. Your body is affected very severely during low and high episodes. During high episodes, you get very tired, nauseated, thirsty, and you have to pee a lot. During a low episode, your brain basically can’t function and your body reacts the same way. Increased heart rate, cold sweat, shakiness, irritability, sleepiness, blurred vision, confusion, exhaustion, loss of coordination, increased emotional distress, and sometimes seizures all occur during a low.
Now that you know a little more about how diabetes affects the body, here is Harland’s take on his diagnosis; Harland says diabetes has made his life more challenging, but at times it’s a motivator because when his blood sugar goes too high exercise helps bring it down. He uses kayaking to help keep his blood sugars down and says it helps him “just have fun and feel normal because he can enjoy himself with his family and friends.” Harland wants to let other diabetics know that you should really know the consequences of heavy exercise on their disability and how to correct or prevent those consequences. He says “The rewards of athletics are healthy lifestyle and mental wellbeing.” Diabetes has made him learn about his body signs and signals better. The more muscle & strength he has the better his body is utilizing glucose and insulin. Mentally, he says he has learned patience such as having to sit and eat sugar and wait for a low episode to resolve before resuming activities. He also says diabetes has taught him perseverance because he often has to push through frustration and the urge to not get up.
As you can see diabetes isn’t a picnic walk. Lots of people think it isn’t that bad, but the truth is we can slip into a coma and never wake up again. I have had countless people and coaches tell me I am a bad athlete or that I am being too dramatic about having low blood sugar. I also have people come up to me and say I’m lucky to have diabetes because I get to eat sugar all the time… it is a very hard disease to live with especially when you are a high level athlete. I train two to three times a day for a couple hours a time which includes intense weight training and running. I also rock climb, run, stand up paddle board, ski, and hike a ton. Because I’m so active I have to deal with post workout lows (lows that happen up to 8 hours after working out) and when you’re working out everyday multiple times a day, sometimes it just turns into an all day low fest. I get so dizzy that I feel like I’m about to pass put and I lose the ability to speak. When this happens, I have no choice, but to completely stop my workout.
It is the most awful feeling to stop half way through because by the time my sugars come up the intensity of the workout is usually ruined. It’s also very hard to do group workouts and be around people who don’t understand what happens. Most of the time, I feel like everyone else thinks I’m weak and out of shape and I battle with it a lot. However, kayaking has also introduced me to some amazing things that help me with my diabetes. I have gained so much mental strength from having to push myself in my sport and stay strong when things go wrong. I also have some amazing people that I’ve met through kayaking that have supported me so much and have made a world of difference in my life. One other thing that has always helped me are the people who are inspired by seeing the things I have achieved in sport. There is no better feeling than knowing all the hard things you are going through help other people to push and better themselves though sport.
I wanted to write this article to explain just how much people with auto immune diseases go through and give a little insight into how kayaking helps us escape and hopefully inspire others to give the sport a try to help them with their diseases. If anyone reading this has any questions about how kayaking can help you or advice please feel free to find me on facebook and send me a message or if you’re a diabetic find my bio on the Medtronic website and email me!