Here’s the thing about chronic pain, at least for me….
24/7 I am constantly in some level of pain. All the time. However, there are flare ups, there are days it is significantly worse, days where it’s not as bad, days where the pain is targeted in different locations in my body, and days where it’s worse because of too much use from the day before.
So most of the time my constant level of pain is at a 5 (on a scale of 1 to 10), which is completely manageable for me. But imagine never having a break from that moderate level of pain, and occasionally having days where it’s unbearable, it starts to wear you down.
Which is where I’m at today. Today I tried to do things and ended up back in bed frustrated by how much pain I’m in because it’s at a level that isn’t possible for me to work on my list of things to do. So I broke down crying. Not necessarily because of how much pain I’m in but because I’m frustrated that I have a day off of work and I can’t physically get out of bed.
Wanna know what I did to cause a flare up of intense pain today? Yesterday I worked a full day, stood most of the day from 7am to 9:30pm, walked around with my dog and we did a small run that was maybe 100 feet. Nothing crazy, yet here I am unable to get out of bed.
I need to allow myself to rest and recuperate without mentally beating myself up over pain.
I wish I could love summer. I grieve the things I can no longer do because they are now a recipe for disaster for my body. I miss being able to hike and enjoy the great outdoors. Although heat and exercise has always been a trigger for my EDS and POTS, it has never been as bad as it is now.
Now I can’t be outside for too long before my heart starts freaking out and I completely lose feeling in my entire body. It uses to just be that I lost feeling in my toes and fingertips but now it’s my entire body. Which is scary. It’s scary to not be able to feel anything, especially my face.
What’s worse is how my body responds to sudden changes in temperature. I cannot go from an icy AC blasting house to outside if it’s anything above 72°F and vice versa. I almost need to be stuck in a temp controlled bubble at all times.
I need to move somewhere where there’s 0% humidity and it’s never anything but 68°F year round. That would be best for my heart and my pain. I can’t imagine not being in pain everyday and not having all of these other issues everyday. It would be so refreshing.
But alas, that’s not the case. And I live in a humid climate that hates my joints and my heart. So I need to combat these environmental factors with preventative measures. Things like cold necklaces and making sure I stay on top of my 4 different heart supplements and my nerve pain medication. I need to be making sure I’m honest with my doctors about what I’m feeling and new symptoms so they can help me with new treatment plans.
I need to advocate for myself first and foremost and make sure I am doing everything I can to stay on top of my body because no one else is going to do it for me. Not my fiance, not my friends, not my family. No one is going to advocate for me the way I can advocate for me. I know what brings a heart episode on, and I know how to avoid it (for the most part). I know what makes my pain worse, and I know how to avoid it (again…for the most part.) I need to look out for my own health.