The Rough Stuff

There are of course some positives of living life with chronic illness, such as appreciating the little things more and growing more in your faith (for me personally). However, there are many struggles, too. There are times when it’s a little more difficult to deal with what’s in front of you.

For example, my symptoms have been flaring more than usual. My usual baseline is a few hours of the day in the morning where I can function somewhat normally and then I begin to go downhill in the afternoon till I go to bed and this repeats each day. Totally normal for me and still trying to adjust. Lately, though, my mornings are starting to feel like my afternoons and my afternoons are a whole new level of difficult. I do deal with daily symptoms of feeling lightheaded, tachycardia, fluctuating blood pressure, etc. BUT, my days are now filled with more issues of pre-syncope, that terrible feeling of almost fainting, but not often losing consciousness. My symptoms are of course triggered by standing and movement, so upon standing it’s like my entire world changes perspective. Even sitting I will have some symptoms, but standing is a whole new world. Think about how it feels when you stand up too fast, but that feeling doesn’t go away and lingers till you’re sitting or lying down again. My mind becomes clouded, I feel pressure in my head, my extremities become heavy and turn purplish, and my tachycardia gets worse. Then the headache hits, which I refer to as the “dysautonomia hangover”. That’s autonomic dysfunction for ya and that’s my typical day, as of right now.

Now that I’ve described my typical day in some detail, here’s where the rough stuff comes into play. Clearly, as you can tell, things are pretty unpredictable. I can be fine sitting and then once I’m up things turn bad. This makes for an increasingly difficult time doing daily things such as work or social activities. It also makes me fearful of my future because of the recent worsening of my symptoms that can’t seem to be well controlled with the typical beta-blocker, midodrine, and compression garments. It makes me fearful of the unknown. Is this my new baseline or just a really bad flare that happens to be lasting for a few weeks? I simply do not know, but I do know one thing, and that’s to keep pushing on. I am relying more on those around me right now because I simply am scared for my future and for my health. It’s tough, but I am tougher.