Progress is Hard

 

I’ve made progress. I’ve made actual genuine progress with my symptoms and it has felt so dang good. So good that I have to admit for a few days I tried to disassociate myself with my illness. I felt like I can do this, I can actually live a consistently normal life without being effected by my illness.

But then the bad heart days hit. I’m on my third bad day in a row. Third day of brain fog that I can’t think through, third day of laying in bed, third day of monitoring my heart rate & trying my best not to faint, and third day of pushing myself to do SOME type of activity just so I don’t regress. Bad days have always been hard, but there’s something particularly difficult about them now, in the midst of progress. 

They don’t feel like just bad heart days, they feel like defeat. Like I’m regressing, instead of progressing. Like I’m doing something wrong and like I’m failing because I can’t do what I did just yesterday. 

My dad is color blind. He’s always said that he wouldn’t want to see in color because he wouldn’t want to know what he’s been missing his whole life. I never got it, but now, on some level, I do. 

It’s hard to feel the closest thing to normal that I have in over a decade. It’s hard to be able to take a walk on my own or to increase the minutes I can bike. It’s hard because now I see what I’ve been missing. And when those bad heart days hit, I feel like I’m failing. Am I not pushing myself hard enough? Am I pushing myself too much? 

I used to know what my boundaries were, I used to know that I was pushing them. Now I don’t. I am doing everything I can to better my situation and I’m just going to be honest, this is hard. It’s hard on my bad days and it’s hard on my good days, it’s hard to do the very thing that makes me feel sick in order to make progress. There are ups and downs with chronic illnesses and I just happen to be on one of those downs.

Vulnerability with this is not all that easy, but it is getting easier and it is therapeutic. I’ve received so many encouraging emails and DM’s as I've shared my progress in the last few months of slowly increasing my activity. Fellow spoonies saying it gives them hope to read about my POTS journey and now my progress. As awkward as it feels sometimes to share, knowing it has helped some others who struggle feel a little less lonely in this makes me not care so much how I might be seen. So I will continue to share. I will share the big picture. The good days and the bad days, the victories and the defeat.  So I’ve had a few bad days, but I will choose to honor the progress I have made.