Back in the "before" when I was still working, I was always time aware; never late for meetings, and got everything done for the day.
RA's impact on time
I was, like everyone else here, somewhat chained to a schedule and very aware of the time.
Responsibilities, people to meet, and things to do all at the right time. In a timely manner. Things done when expected. On schedule. All at the "correct" time.
Can’t let anyone down, mustn't be late. Have to find the time to ...
I struggled for a long time to keep this pace up. Bite my chin and keep my lower lip up. Plow through and continue to wow. Except I couldn’t anymore. And I blamed me. So did just about everyone else. From Ms. "can do" to Ms "just won’t."
Constant roaming pain and low self-esteem are not a good combo. And that’s when the vultures smell the blood and start to circle (who here never made an unfriendly coworker or two?)
I was somewhere between shamed and deliriously happy when the doctor said I couldn’t work anymore.
A new relationship with time
Finally I could collapse into exhaustion.
But the funny thing is that I still kept putting myself on an (unrealistic) time schedule. Should have the dishes done by X o'clock. (Gotta watch out for those ‘shoulds’ they’re sneaky little ______).
I’m not sure who I resented the most, people in my life who just didn’t get it and expected me to snap out of it, or myself for knowing better but still trying anyway.
So I decided that what I needed was a new relationship with time. But now it’s MY time. And it has to be that way if I’m going to have any quality of life and if I’m going to take care of me.
Putting my needs first to manage RA
I no longer put others' wants first. (Please note that I said "wants" and not real "needs"). Yes, this has cost me some relationships, but I’ve discovered that I’m better off without people in my life who hold onto unrealistic expectations and demands; the selfish ones as I call them. (Not to their face obviously. I don’t want to get clobbered emotionally or physically. Nowadays ya never know.) :-0
If it takes me 3 tries to put fresh sheets on the bed, well I’ll still enjoy that clean and crinkly feeling. Maybe even more than I used to. I certainly don’t take them for granted anymore.
If I need a nap. I take the time for it. Total permission to indulge myself.
Too exhausted to cook? Bring on the guilt-free frozen dinner of choice.
How I feel managing time now
And amazingly I’ve found that my stress level is lower.
I can relax more easily without any demands except to take really good care of me. I
I will do what I can, when I can with what I have to work with. But always based on my abilities, strengths and willingness at that moment in time.
I finally got off that rolling coaster and now choose the riverboat ride.
Did you have difficulty receiving a RA diagnosis?