Hi dear PBC friends.
So it's a busy time of year with Christmas holidays. I'm involved with my church and the Xmas pageant (tomorrow Sunday). Last night and today are long rehearsal hours. I help by providing the audio-sound. We're a smallish church so it's all volunteer for this kind of thing. Anyway, last night at rehearsal I ran in to some technical problems that normally I would work around etc, but I was struggling to think on my feet....to improvise.
Then of course I didn't sleep soundly last night as I turned things over in my mind... solutions, what to do today, worrying etc..
Well.. I guess that's why I am writing... to those who understand--
My body just doesn't have the same resilience or that extra oomph to push through-- like I had just 3 years ago. The past 6 months I seem to have been having more times of PBC flare ups ( for lack of better words). It's been effecting quality of life- having to cancel things and just not being able to get up and "go"
...I've been trying to pace myself, but still I worry that I'm not going to be able to troubleshoot things today and that I'm going to let down the pageant team. They all believe in me and think I am superwoman..
(A few of them know I struggle with crushing fatigue and foggy head.. etc.)
In the long term-- I am going to be training others to do things.. And that's good.. but it also makes me sad to feel the loss.. of ability .. of strength .. of endurance. I can't "trust" that my body can get it done .. well not like I used to. It's made me sad and mad at PBC ... and I know it could be a LOT worse.. They say I'm responding to URSO and I'm grateful..believe me..I am.
it's just grieving for that super girl (me) who could "make things work" and not sweat. I'm humbled.
I'm praying for endurance today - long dress rehearsal and that I can fix the tech problems-- and that some parents might pitch in and help me in some non technical areas. The pastor is kind and she supports me... she knows I'll do my best.,
I just feel so burnt out.. ugh. Have to get through today and tomorrow.. and by noon tomorrow it will all be over. My stress level is ridiculous and that doesn't help. I know.
Taking deep breaths.. ugh. I know many here can relate - to feeling limits- to not being able to " count on" physical health.. To those who read this- thank you for listening.
Hugs to all.