The RA Is In Charge
While I like to pretend that I’m the boss of me, the reality is that I am definitely not. The rheumatoid arthritis is in charge. Whenever I start to forget this indelible fact, it reminds me: "Kelly, you are not the boss of you, I am."
Every decision must be cleared with the RA. Sure, I can do other things that are unapproved, but I will pay the price for it. Nothing happens without the RA’s say-so.
An RA flare reminds me who is boss
I was painfully reminded of the RA overlord situation when I recently had a flare. I was hit over the head with pain and fatigue when I woke up one morning.
Calling in sick to work
I had to call in sick to work and rest all day, without experiencing much progress in my symptoms. I also went up on my prednisone dosing to help calm my RA.
Despite being on the most effective treatment I have experienced in my more than 40 years of living with this disease, I still experience plenty of bad days and flares. This particular one was pretty bad and I couldn’t seem to fight it (although, believe me, I tried).
Overdoing things when I felt better
After a few days, I thought I was doing better, and then I made the mistake of overdoing things. I had too much activity in the day and got to bed too late.
Then, I was in so much pain and joint discomfort that I couldn’t sleep. I was exhausted, but my pain kept me up late into the night.
This condition does not negotiate
When I woke bleary-eyed the next morning, I knew the RA had vengefully dug me deep into a hole.
I felt terrible and had to move slowly and pace myself. I had to lower expectations for the day and just try to get through it. I had to wave the white flag to the RA, bow down, and whimper, "I submit!"
The next night, I slept much better and woke up improved. But, I wasn’t through the flare.
I knew I had to continue to take it slow and respect the demands of the RA. It doesn’t negotiate. It doesn’t listen. It doesn’t care about my pleading, wishes, or wants. It has a strict, unbending set of demands that must be met.
RA is a demanding condition
Even though I have lived with RA for so many years, I get lulled into thinking "I’ve got this managed" or "It’s under control." But the real truth is that it isn’t. It wags me around like a tail wags a dog, just as much as it did on day one.
As much as I want to portray strength against the disease, it really is a facade. I try to convince everyone else in my life - work, family, friends — that I’ve got my RA handled. But in truth, I do not. I am just trying to get by with the parts it lets me have!
And so, I know there are days when I let people down by canceling plans, calling in sick to work, or pulling away because I need more rest and quiet. But I can’t help that the RA is in charge, and really it is calling the shots.
Acceptance is part of how I manage to live my life
The way I have found to manage to live my life is to accept (or try to) that the RA is in charge and I must do certain things to take care of it and my health.
When I forget this basic rule, I do get myself into trouble because I can’t get around the fundamental restrictions of RA like pain and fatigue. They say that sometimes the only way to go is through, and RA definitely makes that true. I can only live through it because I can’t change it.
Have you reclaimed what RA has tried to take away?