Are Those Bricks Holding You Down?

#dysautonomia #fatigue #smallfibersensoryneuropathy #fibromyalgia

Today my pain is consistent with "I want to be in bed really bad," but I am at work. Luckily, I am at my job that is the lesser of two evils. I work as a nurse in the operating room at an orthopedic hospital part time, and I also work at a hyper wellness center as an infusion nurse part time. The infusion nurse gig is pretty chill for the most part, although I do have some days that get pretty busy; however, the operating is where I love to be, but it is very physical and extremely hard on my body. But on days like today, it is hard to do the simplest and smallest tasks. Pain makes it pretty difficult, but the fatigue is so hard to deal with. Fatigue effects me every single day, but some days it is completely overwhelming. Some people think that fatigue is like being tired, but it is far from that. Real, true fatigue will not only have you feel as if you have bricks attached at your hands and feet, but it will literally suck the joy right out of me. It makes me into a person who cannot do a lot, in a body that really wants to do everything. It quiets the adventurous side of me. It makes me miss out on parts of my life that I don't want to miss, and it makes me scared to do some things, because I end up paying for it with some really bad days to follow. Yes, it could be worse, right? That's what people say... but I am not whining, or crying, or asking anyone to feel sorry for me. That is the last thing I want, but I do want people to realize that when you have a chronic condition, not only do you fight your body on a daily basis with the symptoms of that illness, you also have to begin to fight anxiety, depression, and fear. Of course we all know that it is possible that one day we could all be diagnosed with something unexpected, but I never thought that one day, when still so young, I would wake up and never get better. I did not think that I would have to struggle for the rest of my life. Yes, I do what I can to manage it as best as I can and to take care of myself to prevent further progression (at least quick progression), but the truth is, this can progress, and it can be fatal in some cases. So, theres's that. And some days I just feel that it's not fair, but life has never been fair, no matter how much we desperately want it to be.

Anyway, today sucks, and it's hard, and maybe tomorrow will be better. My heart rate has been all over the place today too, and it is so uncomfortable, so there's that too.

1 hour later- and I haven't gotten around to posting this. Now I am in so much pain that I do not want to move, but I am at work. My heart is beating fast and irregular, which apparently the cardiologist says it's fine that it occasionally does that, even with medication I take for that exact problem. Because my heart is beating so fast, not only does it make my hands shake, it also makes me anxious because the feeling is so uncomfortable and scary and I feel sometimes as if I can't catch my breath. The pain is coursing through me, but I do deal with this all the time and on the surface to strangers, co-workers, or clients I look happy and fine. In fact, at this point I feel so bad that I want to go to the ER, but I also know that when I get there, most doctors in the ER will not understand, thinking I'm making this up, seeking pain medication, or they will label it as a panic attack and send me on my way, especially after seeing all the medication I am on. Being a nurse I know far to well the labels that people (nurses included) place on patients based on their medications alone. And then there is also the fear that something different will truly be going on, and I will say the cause is because of my chronic conditions, and it will be something else that kills me or causes severe trauma.

But hey, one day at a time. <~~~~~sarcasm at its finest.