Totally understand

[DonnaBoll]

Not one of us has read anything about PBC that the 2 words fatigue and itch haven't been mentioned.

I just want to share this with you. Just as often as we read about the fatigue, we are told "take a nap", "sit down", "manage your time better". There are so many quick fixes that come from those who just don't 'get it'. Believe me I 'get it'. I vividly remember years of experiencing that kind of fatigue few have experienced. I know we all have... somehow the word 'fatigue, just doesn't describe it, does it?

Most of you know that about 2 1/2 weeks ago my husband and I both contracted Covid as a result of flying to Tuscon for a weekend. Of course the fatigue was there for about a week or less for me.

But the last few days it has returned with a vengeance for me. This is one of the many ways we help and support each other by sharing our experiences. It certainly makes me feel less alone when I know all of us might have days we hardly can get thru. It sure gives us perspective about how we need to listen to our bodies. I just swept the kitchen floor and vacuumed a circular living room rug and I've sat down twice.

Please don't ever hesitate to share --- even the 'not so good' days with us. We are all in this together. We all 'get it'. Thanks for listening....

[Turquoise2075]

Hi Donna, I feel for you and know the fatigue can be awful. I think what makes it so hard is you can have a good few days or weeks and then it strikes again. I remember my liver specialist saying to just extend myself a bit more each day, like a graded exercise program. I could tell he has no idea what it is actually like to live with it. At the time I could not lift my body for about 7-8 hours in the day. My dishes would be left for 3 days because I was so incapacitated. The fatigue is improved at the moment but I have been awake for over an hour with the itch which normally isn’t that bad for me. So it’s just an ongoing thing isn’t it and navigating through all the time. I really hope the fatigue post-Covid eases up soon. Take care and rest as much as you need.

[DonnaBoll Administrator in reply to Turquoise2075]

Thank you for your kind words. No one really knows how we feel when we say "we're tired". I once told another support group that there should be another word for how we feel when we're fatigued. Tired just doesn't do it, does it?! I'm so sorry for the itch rearing it's ugly head now for you. I remember all too well those nights sitting on the side of bed rocking back and forth asking God to make it stop. I pray that you are feeling better by the time you read this. We all understand and support one another. We have to ....

[Ancolie]

I am all with you. Be kind with yourself. Maybe a better word for fatigue would be exhausted (definition: drained of strength or energy; worn-out). Sometimes it just hits me like brick all at once ! Hope you get better soon 🤞xxx.

[DonnaBoll Administrator in reply to Ancolie]

Yesterday was much better for me. Hopefully today will be as well. It sure does 'hit' us quickly so much of the time. Just putting one foot in front of the other seems to take so much effort. I was at a conference once and one woman described it as trying to walk thru wet cement. That could sum it up, I think. We all need to remember to be kind to ourselves - everyday.

[Couly1960]

I had covid in February and I still have fatigue from getting it! I pray that I will eventually get my strength back! I’m just so scared of getting covid again and having through this all over again!

[DonnaBoll Administrator in reply to Couly1960]

Oh lordy! I hope the fatigue doesn't last that long for me. I am so sorry. It really just takes everything in me to just walk at times - it's so sporadic for me. I had Covid the first time a year ago in May. I never had fatigue like this that time at all. I did take Plaxlovid then. Now I now it doesn't 'mix' with 4 of the drugs I take so I didn't have it this time. Not sure if that was the difference for me or not. Please take care of yourself.

[Blue-Mom]

There is something comforting in knowing that there is someone who understands that it isn't just "tired" and that a nap doesn't fix it. By far the hardest part of pbc for me. And the brain fog that seems to accompany the fatigue. They are such good friends.