Holiday stress

[EileenUSA]

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.

[kimphoebe]

Hi there

Sorry to hear how you are feeling at this time, I know excactly what you are going through it really sad how pbc can effect our life's so much. This time of year is so hard I would really like to lock my door and shut it all out but I want do that. People have no idea how bad it is. For instance today my sister will be calling in and she is so full of life but if I say anything how tired I am and am not looking forward to Christmas she just says for gods sake shut up and dont be so miserable. Already missed one xmas meal out so far because to tired. Anyway I've had a bit of a rant now. You take care and you can only do your best so don't be stressing over it. Merry xmas

[EileenUSA in reply to kimphoebe]

Kim,

I REALLY appreciate your reply and support. I missed Thanksgiving dinner because I was sick with a respiratory thing...just couldn't do it.

I think right now I'm hit emotionally (as well as physically) because this tech stuff is something I've done for 25 years... and feeling my ability to "deliver" or to troubleshoot on the fly slipping is hard to accept. AND it's bad timing.. lol.. because I want to get this right tonight for tomorrow's show.

Again, I am very grateful as I know it could be worse.. but right now I'm letting it get to me.. but just typing out to you all who understand is such a help.. truly. I'll do the best I can and let go of the rest as much as possible.

I am so sorry to hear about your sisters dismissive non support. That is awful. A lot of times I just shut down and don't tell people any more that I'm feeling poorly .... and of course since "I don't look sick". And everyone thInks because I'm responding to URSO that "now I'm fine".

Well... maybe I need to be more vulnerable to close people and really let them know how sad and hard some of this feels at times.. I dunno..

Lessons to learn.. I'm grateful for you Kim - for you sharing.

and I pray the trial medication you are on holds this damn PBC down...

[kimphoebe in reply to EileenUSA]

Thankyou for your kind words,

I hope you stop feeling the way you do soon and mayb then you can enjoy the holidays. Let us know how you get on with your pargeant.

Best wishes to you xx

[Lawyers in reply to kimphoebe]

It is impossible for people to understand. Most dont know what it is. But you look so good!! Ugh.

[kimphoebe in reply to Lawyers]

Thankyou

That was a couple years ago, had a lovely weekend with my daughter for my birthday. Went to see Bette milder first then a lovely afternoon tea on way home. Nice memories.

Thankyou

[Lawyers in reply to kimphoebe]

Glad to hear you are feeling better. Better Midler. Sure she was great. Happy Holidsys!!

[butterflyEi]

Only just reading this EileenUSA so I am hoping that you managed to get through the day and had some enjoyment from it all. It is hard to be handing over the reins to others but I applaud your magnamity in that you are prepared to train others which I believe is truly a gift and by sharing with others you will be able to more enjoy the time that you are able to give. Like you I miss that "super" girl who was never fazed by anything. I wonder if you are also recovering still from your respiratory thing, if you had anti biotics they can have an impact. Wishing you well and hope you had a good day.

best wishes

[Hidden]

Hi EileenUSA,

Your words " i know it could be a lot worse" are ones i use alot,its almost as if we feel guilty expressing how we feel, which we shouldn't. I cant speak for everyone who has this disease,only myself, and i feel that at times i grieve the person i was before i took ill. I know the saying " we will die with PBC ,not because of it" but it has taken such a lot from my quality of life. Its not wrong to miss the people we once were and yes,we can still have a good life. 5 years on from diagnosis and i still miss the person i was.

I hope your Christmas pageant goes well and I'm happy to hear that next year should be less stressful with the help from the people you train. Adapting is one of the keys i have found that helps me get through.

Wishing you a very merry Christmas and a happy New Year.

Take care x

[EileenUSA in reply to Hidden]

Angel, thank YOU for sharing. Yes you are so right- regarding when we say things like "it could be worse"... You know what- it could ALSO BE BETTER..

that would be nice sometimes..

I think grief over losing parts of "who we have been" and feeling new limits- well i think that grief is healthy reaction..

It's a learning game... how to pace, how to live with the new normal making the best of the life we have left to live.

Having the disease makes me so very aware and grateful for things I wouldn't have really acknowledged before..

I got through the pageant. It went well. I had some help with the clean up- 2 friends unexpectedly showed up and did all the carrying and putting away- It was a real blessing.

Thanks to all who have contributed here.

[EileenUSA]

kimphoebe , butterflyEi and Hidden Its 7:00am here in Chicago. I'm heading to church for 2 "shows" of the pageant and then it's done! I just wanted to let you know that reading your words of support and care meant the world to me this morning. We share this bond of this crazy rare disease and I am grateful to have my words received here.. and to know that you get it.. and i appreciate all. And another thank you to the PBC Foundation for supporting this forum at Health unlocked.

Much love to all,

Eileen

[Shulsey]

Yes, unfortunately this is something we all have experienced. Mine started three years ago. I was a hairstylist & simply couldn't get in to my clients. I'd end up calling & canceling appointments to the point I had to give up my career. Plus I was a very active mommy/stepmommy with our kids. I loved being out in the yard playing ball or just being goofy with our kiddos.Then I started working for our local high school in the cafeteria. It was the perfect job for me. Plus, my eldest daughter was having her senior year then. Three hours of fast paced work with great pay. It was awesome, I was able to take my youngest to school & was out of work before she got out. So, I had time to do groceries, then pick her up & head home. This disease seems to break us a little at a time. I also got to work with my best long time friend of 30+ years. I was with a great group of around 10 ladies. Everyone knew about my PBC. They could just see me having a difficult time, so would make me slow down or even rest in my bosses office. I thought that it was something that would pass so I could continue my job. At this time I was going to Indy at least once a month because I was going down hill fast. I ended up having to resign due to a limited weight lifting recommendation of nothing over 10 lbs due to my having varicies. My last day is work was April 27th, 2015. I filed for a disability claim & was denied twice (that's just how things work where im from) now I've finally got my hearing date which is where they'll either give me my claim or I'm going to have to file again. This disease steals our joy way too often. It's awful, but we have to try to do our best everyday. My fiance has finally realized that I'm a very sick lady & he cannot fix me but he can help & support me. He wasn't always like that, it took a ton of arguments to get him to admit that he cannot fix what I have.

I still hurt from time to time. My heptologist sent the ok for my family physician to prescribe Percocet. The lowest dose as needed. I take, maybe two a day. If I take them at all. They did help though. I still get the"brain fog" when im completely exhausted. Makes me sound drunk sometimes lol, & I don't drink. 😆. Sending prayers your way & Happy Holidays. We can do this PBC'ers 😊.

Stay Strong❣️

Shannon

[Lawyers]

I am sorry. How long have you had PBC?? How old are you and what stage?? I am 62 stage 2 PBC AIH and CREST. Pretty asymptomatic but find that reading posts make me so anxious that makes me more tired. Worry so much about what is to come. It is a double edge sword!!. Happy Holidays.

[kimphoebe in reply to Lawyers]

Hi there

Is it me that question is for 🤦‍♀️😂

[Lawyers in reply to kimphoebe]

Yes. Curious of your journey or anyone else's.

[kimphoebe in reply to Lawyers]

Hi there

This is how my journey started was dx in 2012 after a biopsy to rule out an overlap. Was told was in early stages. But after mayb a year or so alp didn't come down so was referred to a pbc specialist in Birmingham. Had a few fibroscans and now at stage 3 with severe fibrosis. Come to conclusion I am a nonresponder to uso. Currently on a clinical trial with positive results. Still at stage 3 but no further progression at the moment. Will be having another fibroscan in the new year. Symptom wise terrible fatigue, joint pain, stomach problems and the latest brain fog, but could be worst so I'm counting my blessings. Hope this helps

[Lawyers in reply to kimphoebe]

Sorry confused. Are you stage three cirrhosis. They did not give fibroscan. Was told it was not accurate. That is why I had liver biopsy. Dont understand. My stage us moderate fibrosis.

[kimphoebe in reply to Lawyers]

Stage 3 fibrosis, score of 16.3 on the fibroscan. Fibroscan is not so accurate in early stages I have read. I have had quite a few now because on a clinical trial.

[Lawyers in reply to kimphoebe]

Kim are you in the US? How did you find clinical trial?

[kimphoebe in reply to Lawyers]

No I'm in the uk. I'm on the extended part of the trial now. They have just started phase 3 of the trial in the US. I was put on because I'm a nonresponder by my heptoligist.