EDIT: I’m so glad I posted this. It was 3 AM and I couldn’t sleep. Rereading it – oh my God it’s so long.
The affirmations, encouragement, and examples from your own lives are amazing. Truly gifts. Thank you all.
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When, oh when, will I start remembering that my life and body are different than they used to be and I need to take care of myself differently? I still say to my husband, “I don’t know why I feel so awful today.” Almost at some point every day, I say that. And he’ll say, “Honey, because you have RA.”; which is actually very helpful. It kinda takes the stress out of it and I go, “oh, yeah”.
Sucks, but oh, yeah.
I stood up in the theater tonight and could’ve fallen over the railing. My balance is off because my pain level is so high. My daughter helped me and said to be careful; “Mom, your balance is off right now.” SHE remembered but I continue to forget.
I saw a post on here about hand shakes hurting and that’s what prompted this post. I realized I’d been thinking it’s weird that I’ve met some really grippy, hard hand-shakers lately. No lie—that’s what I’ve been thinking! I didn’t make the connection it was because my hands hurt. And I KNOW my hands hurt. But, ugh, somehow I don’t put it together with the further repercussions of it all and the change in behaviors I need to make. Even to lessen my pain.
I still make plans to do more things in a day than I could possibly be functional for or, worst case, might set me up for days of increased pain. Three days ago, I went to a meeting, then mahjong, then the eye doctor. I was in so much pain at the doctor’s and slumping in the exam chair that HE noticed and asked what was going on. I explained a bit but said I could tough out the hour-long exam. Yes, even though the pain was making it hard to see and I just wanted to close my eyes (at the EYE doctor; the irony is not lost on me); even though I already had a headache and dilating my eyes always gives me a headache which would’ve been a double whammy; I was gonna stay. It hadn’t even crossed my mind to leave. WTF?! Great doctor—sent me home.
Anyone else experience this? I’ve gone back to therapy and antidepressants. Both have helped. But the denial is LASTING. Literally, 6 years into this. And I was probably in denial for years before the diagnosis. The same daughter encouraged me to go to a doctor back then because she noticed my pain level and didn’t think it was necessary to live with it and maybe there was an underlying cause. It wasn’t and there was.
But some positive changes I’ve made, small successes that are worth noting so I can build on them:
1-I started Zepbound 3 days ago to lose weight. I asked for it proactively from my PCP. (Again, daughter mentioned it weeks ago. I’m lucky to have her.) I want to try to parse what pain is from the weight and what is from RA. Maybe I won’t need so much autoimmune meds or need to change off the one I’m on. It’s a fact that being overweight contributes to pain and inflammation and I can’t exercise to try and lose the weight because I’m in pain. I know you on this sub can relate to this. (Never mind the weight gain from the prednisone.) When I checked on contraindications with my rheumatologist, she said there were none and it was a good idea because Zepbound is known to reduce inflammation. I’d like to ask her why SHE didn’t mention it, but I want to preserve our relationship. I’ll think of a gentle way to bring it up when my frustration subsides.
2-My latest flare (brought on by a Covid booster and lasting 3 weeks but worth it to not get a bad case of Covid) is easing. As I’m trying to get back into a walking routine, I’m consciously taking a day off between walks. AND only walking a mile. I didn’t go out and do a 3-mile hike with my husband. I will build up. Before starting walks again, I first started some 10-minute sessions of light tai chi alternating with yoga, and went back to Pilates but only for stretching. (OMG, guess who teaches individual Pilates? Same daughter. Full disclosure, my other daughter calls often from out of town to check in and made me a video of part of her yoga routine.)
3-I’m a week in to setting an intention in the mornings and assessing where I’m at.
4-I told my husband several times over the last few days that I wanted to Uber instead of walking a mile to and from our hotel to a restaurant or the ball park in the city we were visiting. I proactively checked a map app and picked short walks each day.
5-I wrote about all this here and already feel better. Wow. Progress, right?
Thanks for listening. You all are a great source of support and info.