I am not going to sugar coat it; living with a chronic illness just sucks. Imagine being merry and carefree, until one day your legs are too weak to move and your head is pounding so hard it feels as if a sledgehammer is going through it. The week before I received my life changing diagnosis of POTS, or Postural Orthostatic Tachycardia Syndrome, that was me. Somehow, I would manage to go to school during the day and crash on the couch for hours on end as soon as I got home. It became a struggle for me to hold a pencil as my body was so weak and fatigued. Imagine, everything you worked your ass off for suddenly being taken away as you are told by your doctor that you have to start from scratch by doing only ten minutes a day of cardio. Gone are the days of carefree road trips and spontaneous dinner plans; as my life needed to be meticulously planned out to avoid diving deeper into a flare.
You see, POTS is a dysfunction of the Autonomic Nervous System or ANS. Once that goes haywire, it is very difficult to wrangle in. Everything your body naturally does on its own to sustain itself including heart and breathing rate, digestive functions and temperature regulation get out of whack. Our ANS is like a two year old and does not like to behave, which is why living with a condition like POTS is so life changing. It could take a day to dive into the physiological mess of POTS and a lifetime to dig yourself out of it.
Living with POTS has really taught me to evaluate my life one moment at a time. While I do not have any extra energy to spare, I need to spend my energy on the things most important to me. My doctors have become my inspirations and I have had to cancel many,many plans at the last minute. The one thing that is the hardest for me is to make plans in advance because I never know how the person will respond if I need to cancel suddenly due to a syncope episode.
POTS causes the body to react in such abnormal ways, it can be very scary. It is so emotionally and physically draining that many times I come home and do not even want to eat dinner at the end of the work day... just because, trying to hold up a fork is too tiring. When everything becomes a thin balancing act, you learn to realize the things that really play a role in making you a stronger person.
POTS can present itself in a myriad of symptoms ranging from mild to debilitating, but everybody eventually reaches the breaking point when they need to see a medical professional to get the diagnosis.
I really don't know how I seem to do it, but I somehow try to stay somewhat positive throughout all of this ANS tantrum. Yes, I live my life minute to minute but that doesn't mean I cannot have a good time doing it.
Way easier said than done, but it is crucial to try to stay as positive as possible throughout any chronic illness journey; (way easier said than done). Letting chronic illness hold you back and rule your life is detrimental and could lead to many other health problems. From the brilliant minds of Shonda Rimes comes this last remark, “Boundaries don't keep other people out. They fence you in.”