The Balancing Act of ePatient Advocacy and Self Care
I’ve started having new symptoms…and old symptoms that haven’t come around in quite some time. Yesterday I felt a pop and then what I can only describe as an explosion of glass in both my knees. It very seriously felt like a glass dish had exploded within my leg. I have had mini-explosions from that point on. Every muscle fiber is on fire. My glands are swollen and GI symptoms are lurking. Fatigue is worse than normal.
Whine, whine, whine. I know that I have been both slacking on finding a new medical team and slacking on the self care. I also know that my disease tends to flare harder during mid-Fall.
There are days where this pain will swallow you up whole. It’s only 9am, but I know today is one of those days for me.
Last night was the first time in a long time that I felt both completely defeated and overwhelmed by my disease.
Overwhelmed because Autumn always seems to hit the Autoimmune Arthritis community the hardest.
Overwhelmed by the number/content of messages in my inbox (though I love hearing from you). Overwhelmed by the now 29,461 people subscribed to this blog just through Tumblr alone (which is humbling and amazing for me, but that’s also a lot of eyes). Fellow MedX ePatient/Podcast extraordinaire/Diabetes advocate Chris Snider recently shared similar thoughts on his blog re: managing advocacy and self care:
For the ePatients living with chronic pain, for example, there are never enough spoons in the day to carry out a list of ordinary tasks but if you factor in the weight of an entire community that sees you as a leader (and maybe even role model) the pressure can get quite overwhelming.
Typically, this is my sign to take a little break: disconnect from Tumblr, Twitter, the community, and just care for myself.
I compromise and undermine my own advocacy work, what it means to be an ePatient, if I compromise on my own self care.
So that said, it’s time for a time-out, probably right after World Arthritis Day? I really have no idea, but if I lay low for a while and don’t respond to messages, please understand.
See you soon and take care of yourselves when you need to,