I’ve been learning some new things about my RA this week and having some new realizations.
Yesterday, my pain got progressively worse throughout the day, despite having been to the ER for steroids and whatnot a few days before and being on a taper.
By the time my husband got home, I was in extreme discomfort, and, though I usually keep a handle on things, I just started to crying in the middle of our kitchen.
At that point, I decided, for the the first time ever, that my next day (today) was going to have to be spent in bed entirely (though I have essentially been on bedrest, I have been able to wander around a bit).
Where before I’ve had days where I’ve woken up and realized I was going to have to change plans and stay home that same day and rest more or I’ve gotten sick throughout the day, this time I just knew I was getting really really sick and (at least) one day’s total bedrest was already coming my way in advance.
That probably doesn’t sound like a major difference to a healthy person but, to a chronically ill person who has been trying to get things to shift in a more healthy direction, it is definitely a change for the worse.
That, coupled with the fact that my recent labs indicated that I am still in a state of active disease activity (duh) despite being on the chemo drug as well as another DMARD and the prednisone, prompted me to spend today doing some more reading and research.
Of course, I will continue to take those meds (I can’t imagine what this would look like if I didn’t) in addition to my supplements. I will follow my diet as well and practice good self care, including my oils and baths. I will remain open to new alternative approaches.
From a medical standpoint though, it’s time to change the languange I use to describe my disease process. What I am experiencing is no longer a flare/inactive type of presentation. My illness is now in a constant state of activity, where we are really just talking about good days or bad days.
For my own sake, I think accepting that will help me be more prepared to deal with symptoms, as I won’t be expecting symptom-free days when I truly don’t have them anymore.
In addition to reading about my disease process, I did some research on assistive devices that might help with my day to day life. I honestly had to laugh at myself when I got legitimately excited about this one and added it to one of my Pinterest boards:
Yes, that is a cane/chair. Oh, how times have changed for me (and, no, I don’t need that sort of thing all of the time, but on sick sick days, prolonged standing is not my friend).
After some rest, tonight is a bit better overall (though my left foot is definitely NOT better so I’m not sure what to expect from the ortho doc next Monday – we’ll cross that bridge when we get there). I plan to still take tomorrow pretty easy as well and go from there.
I have a pile of books to read, plenty of studying to do, and my oils ready to diffuse.
It will be okay.
I can do hard things.
Be well, everybody.
Love and light. 💚💙💜💛❤️