Having to cancel fun things

[EileenUSA]

Hi all,

I am grateful for this community. I am 2 years in to my PBC dx and find so much help and information here. I got dx just as I retired from high stress exec level job. The fatigue is my biggest challenge. I find that I am reluctant to commit to things that require friends to get tickets etc.. because I fear I won't be "up to it". And what if I have to cancel? Ugh..

This weekend I went to a concert. I really had to push to get through it... I didn't want to cancel on my friends and more importantly- I need that social time with people- especially people that care. But yesterday and today I am paying the price for pushing myself.. it's a tricky balance of pushing to do things sometimes and weighing the benefits..

I know it could be worse, (thank God I don't have to work) but the fatigue and accepting limits -- well at times it still gets me down... not knowing "how I will feel"

I am sure you all know what I mean.

last week I had to drive 5 hours to St. Louis to see a hand surgeon for another disease I have (DuPuytren's contracture). Thank God my fatigue wasn't horrible for those 2 days-I was able to get there and back without major problem.. I have so much to be grateful for (and I am). I want to live fully present in the "now" and do as much as I can at 65... still have dreams and schemes!

Love and hugs to all.

[Shulsey]

Yes, we all know where you're at with this. Yesterday my 8 year old had two softball games in the heat of the day. Everyone basically knows Im ill with a invisible disease & always are concerned with how Im feeling at the games. Which makes my heart full. Then, right after the games we was at a birthday pool party, I was beat!!! Im hurting in a bad way today but looking forward to watching the total eclipse.

Stay strong & pay y2k attention to what your body tells you❣️

Shannon

[EileenUSA in reply to Shulsey]

Yes- listen to my body... sigh... i know. But really... 😳 Some days I'm saying

"listen here PBC you're not the boss of me!" Then later we have to shake hands and learn how to live in peace together....

Although, don't think we're gonna ever be BFF's ..

[Shulsey in reply to EileenUSA]

True story right there

[Ohio82]

So true