When someone without a chronic illness is tired, they can get some extra sleep in order to feel fully energized. However, for those who have a chronic illness, sleep isn't always a cure for exhaustion. Someone with a chronic illness could probably sleep their entire life and still feel tired. In fact, sometimes sleeping can leave chronically ill people waking up even more tired. Then again, if the chronically ill don't sleep, that can make them tired. See the struggle? There isn't much of a solution to our extreme exhaustion that prevents us from doing everyday things. The next time someone with a chronic illness informs you that they are tired, remember that sleep isn't always a cure like it is for the average person.
Tori Foles, wife of Nick Foles of the Philadelphia Eagles, is fighting Postural Orthostatic Tachycardia Syndrome along with the other one to three million people in the U.S. who have also been diagnosed with this condition. With her story being put on the news, more and more people are finding out about this illness and how common it really is. I love that this knowledge is being spread! Nick Foles talks about how elated he is concerning his football victory, but hands the real victory to his wife who courageously fights her illness daily.
Nothing is worse than wearing compression tights that go all the way from your waist to your toes, in 115 degree weather daily. I get stares from people age 1 to 100. While every other teenager in town is wearing shorts and flip flops, I am stuck wearing ugly compression tights that I attempt to cover up with jeans. One of the hardest parts of being chronically ill as a teenager is the fact that most other teenagers are super healthy and active. However, I don't have that luxury, (unless the struggle of putting the compression tights on can be considered a workout.) Luckily, I can get along with being at least semi-active by doing some weird things like wearing 'granny panties.' These compression tights save me from awkward encounters of fainting to the floor in public. Sometimes you just have to not care about what others think in order to do what is best for yourself!
After being diagnosed with POTS, I struggled to describe to my family and friends what it felt like to live with a chronic illness. I have found that this story is the best way for others to get a glimpse of what it is really like. As someone with a chronic illness, I have learned that energy and strength is a privilege. In a way, having a chronic illness has taught me to focus on what is most important, because my spoons are limited. I have found this story to be super relatable and a great resource!
My grandparents gave me this spoon necklace as an extra 'spoon' to do one more thing in my day. I have found it to be a source of strength for myself and a reminder to others that I only have a limited amount of 'spoons.' If you google spoon theory necklace or key chain, you will find thousands of necklaces and key chains to choose from. Someone you know with a chronic illness would love this as a reminder that they are strong!
Though every chronic illness story has similarities, we have all been on our own unique roller coaster rides. My story is no exception. Back in February of 2017, I was an average teenager who loved hanging out with her friends and doing things all teens enjoy doing. I ran track the day before waking up with symptoms such as fatigue, vertigo, and a constant migraine. After realizing this was more than just the flu, we sought out help from medical specialists. The fear of the unknown was always in my mind as well as my family’s. Doctors often suggested it was just all in my head. After almost five months of going through test upon test and going to over fifteen specialists, a cardiologist finally suggested a diagnosis for Postural Orthostatic Tachycardia Syndrome (POTS for short.) POTS is a condition in which a patient has an abnormally high increase in heart rate when changing from lying to standing.
Oh and yes, I discovered that POTS is chronic. My world came tumbling down. I could no longer run track as I loved doing. I had to stay home in bed on the weekends rather than going out and hanging out with all my friends. I missed over half the school year. I lost some of my best friends. I did not feel like I had a purpose anymore. I felt a loss of who I once was. At times I did not think I could go on much longer. Doctors would tell me that I was better, but then I was not. I started losing hope. I wondered why me, as it seemed as if most of my friends had perfect lives. These past two years of my life have been both the best and the worst. I have learned things that I would never have been able to learn if it weren’t for my chronic illness. I want to share a few of those with you.
Here are some snippets of the roller coaster I have been on. It's ok to be real sometimes.