On Thursdays I try to impart some bit of wisdom to you all. Nothing is coming to mind today for some reason. I have no earth shattering words. I just want you to live your best lives.
Some days I know it's hard to do. For me, today is one of those days. I told you that lately my first trip down the hall for coffee has been a real struggle for me. This morning was one of those times. This was a perfect example of someone having such a struggle but we look exactly the same as we did yesterday. No one sees what challenges some of us face every single day. Even if it isn't every day, when it does happen it's almost like a private thing. No one sees our fatigue or our itch but it sure affects our lives, doesn't it?!
I've said many times that PBC is a private disease. No one thinks we are sick because there are no outward signs. I use the phrase there is 'not a face' to PBC. When someone has asthma, Parkinsons, cancer and so many other diseases, we can immediately have a visual picture of it. Not PBC....our challenge is so often only 'seen' by us. We can never let it define us. We are not PBC. Don't ever give PBC that much power over us. We owe it to ourselves to live our lives the very best we can. Take the time to see what is often right in front of us. Don't be in hurry to get somewhere and miss all the beauty along the way.
I hope this is a good day for you.
Written by
DonnaBoll
Administrator
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I know - and hope everyone else do too - that none of us are alone. It can feel very lonely when the itch won't stop in the middle of the night. You can feel no one can possibly understand when we say we're tired. Being in any type of support group can make such a difference. Knowing there are people out there, most of whom we will never meet, who totally understand what we go thru, gives us some comfort. Hope you feel better soon too.
Donna , thank you - for caring about others, for always having these words on this forum and for always getting the right words at the right time.
The fatigue is overwhelming sometimes. I am off work July and August as I just work term time in school, but I think I’ve struggled more with the fatigue. I put it down to expecting more of myself - thinking I have to do this, do that etc as I’m ‘off’ ..
anyhow, I really hope your day has gone ok and you enjoyed that coffee, and another.
I think you are so right about how often we expect ourselves to do it all, always saying 'yes' to everyone, and always being in control. We put so much pressure on ourselves - and that only makes us all too often fell guilty when we can't 'do it all'. Take care of yourself. Listening to our bodies when we need to rest often takes practice.
I have recently become part of a women’s Bible class in our small town, some of us have a known each other for a long time. We have a group text where prayer requests, trials and joys are shared. We are all women in our 60’s,70,s and 80’s so the level of understanding and compassion is wonderful. PBC can be isolating and lonely when symptoms are bad; I also have severe migraines and spinal problems that can keep me homebound for days at a time. I am so thankful for my ladies group and also this group- Donna , I look forward to your posts and find them encouraging and enlightening. I hope you have some better, stronger days ahead. ❤️
Thank you so much for your kind words. Having friends thru thick and thin is a blessing! Sharing life experiences can make all the difference for sure. I bet your group is a great support for you on those 'not so good days'.
Donna, I’m sorry you had a rough day today. I can share a bit of advice:
If you live someplace flat and walk a lot, don’t assume that you’re in good shape! I am currently in France for the Olympics and just got back to Paris after four days in Marseille. The first day, we walked from our Airbnb to the top of the mountain where there is a beautiful cathedral. Then, of course, we walked all the way back down. There were of course also the steps inside the cathedral. Let’s just say my legs and I are no longer friends! Traveling like this at almost 60 is definitely different from similar travel during an after college. It is making me feel my age. When I get home, the weight room and I are going to become friends!
Age definitely makes a difference. I'm 74 and just walking on uneven ground sometimes can be a challenge, How exciting to go the Olympics! I do use my walking poles when I'm on a trail or longer walks. They makes such a difference on my knees.
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PBC Name Change notice released via PBCers.org (* Partially repetitive to what's been posted here and with a few diifferent details)
PBC and Cholinergic Urticaria
