Thursday's Thoughts

[DonnaBoll]

My morning are SO bad for my fatigue. It's always when I first get up and walk out into the kitchen. It's all I can do to get some coffee and end up back in my recliner again.

So some of you have certain times it seems worse?

What do you do to help the fatigue?

I know so many deal with this part of PBC every single day. It can wash over you all of a sudden. You never know when it will strike - like we've talked about before. it can run social events, planned activities, or even something you wanted to get done on your 'to do' list.

Just would like to hear some other folks' experiences with fatigue.

[Deemum]

hi Donna , yes the fatigue can be so much worse some days with me too, some days not just so bad. Some mornings, I’m same - get coffee, sit down and then could easily fall asleep again!

I’m trying to exercise as much as I can.

I find I have terrible heartburn / acid reflux and also bloated tummy some days. Do you ever suffer with this too? I’ve had a few nose bleeds recently too. Nothing major, but just unusual as never have had nosebleeds even as a child.

Hope you had a good morning, go easy on yourself and enjoy a second coffee!

[DonnaBoll Administrator in reply to Deemum]

I have to admit I find real comfort in knowing both of us struggle to get that first cup of coffee. We are all in this together, aren't we?! I still do my water aerobics classes twice a week. I don't have those GI symptoms. Do you think you need to check those out ? Do you take medication for those? Please let your primary doctor know about the nosebleeds though. I did go back to bed for an hours... then a shower and got dressed. Face the rest of the day as best I can. Tonight water aerobics for me!

[Deemum in reply to DonnaBoll]

Water aerobics is so good. I went a couple of times to our local swimming pool who do the classes but they book up so quickly - within half an hour! We live by the sea and I see so many folk sea swimming and they say it is just amazing for health benefits . Enjoy your water aerobics Donna. We are in Portrush for a few days which is lovely

[DonnaBoll Administrator in reply to Deemum]

Our YMCA used to have us 'sign up' for the water aerobics classes. It was such a battle to get signed up. Now you just show up - seems to work out just fine. I admire anyone who swims in a lake or the ocean. I have this 'thing' about fish... so stupid but I'll stick to my chlorine water for now. ☺️

[Deemum in reply to DonnaBoll]

I totally get that! I have swam in sea here a few times and it is invigorating but if seaweed touches my leg, it makes me jump! But there are folk who go in the sea daily, no matter what the weather is. But I think swimming pool is definitely better - and safer

[DonnaBoll Administrator in reply to Deemum]

Yuck with the sea weed.. I know there are fish in there and they might touch me. Nothing relaxing or fun about it.....

[TylerA in reply to Deemum]

Are you in donaghadee by any chance ?!

[Deemum in reply to TylerA]

born and bred in donaghadee! Although few years ago we moved down the peninsula . Mum still lives in Donaghadee so we are there most days. Are you from the Dee too?

[TylerA in reply to Deemum]

I live in brighton but I’m from NI and we have a home in Whiterock near Killinchy so am over every month / going over tomorrow in fact! I swim with a group in the sea in Whiterock and one of them swims over in donaghadee with that group too. Spent every summer in ballyhalbert growing up and my lovely ex bro in law lives in donaghadee!

[Deemum in reply to TylerA]

Wow it is a small world !

Yes in Donaghadee there are so many folk swim every day - some at the slip (opposite the sailing club) and some at portavoe beach out the warren road. Do you feel the benefit of open air swimming? I wish I could love it.

Donaghadee is just beautiful. I hope you get good weather when you are visiting. White rock is a beautiful place too. We live close to Ballyhalbert now - near Glastry / Portavogie.

[TylerA in reply to Deemum]

How funny we had a house in ballyhalbert for years as my ancestors on my dad’s side are all from ballyhalbert/ portavogie. Yes I love the swimming even in the winter and the camaraderie is great. I bet we have fritnds in common!

[butterflyEi]

The fatigue used to go in cycles of doing well then suddenly I would just desperately need to rest. At the moment I have a good patch but I put into practice the mantra movement is medicine, of more recent time I take a multi vitamin designed for those over 50 and about 3 years ago (during the COVID pandemic) I introduced S-Adenosyl-L-Methionine (SAMe) into the pill taking regimen. It seems to be a symptom that is different and yet the same for everyone.

I pace myself, I do what I can when I can and those around me are understanding of the limitations of auto immune disease symtoms, I am lucky.

[DonnaBoll Administrator in reply to butterflyEi]

I have a good friend in my former support group who swears by SAM-e. She says it has made such a difference for her. She once posted on the group's site some articles about it as well. I love your sentence.."it seems to be a symptom that is different and yet the same for everyone". That is so true. Movement is most definitely medicine..... I know we tell ourselves that when we can hardly put one foot in front of the other. We keep moving...

[Yankeerose3]

My worst time of the day is between 3-4:00 pm.. as a matter of fact I usually wake up in the middle of the night around the same time .... crazy

[DonnaBoll Administrator in reply to Yankeerose3]

I still struggle with my worst time being when I first get up... still hard to just walk down the hall to that coffee pot. It is weird that you wake up at the same time as the fatigue is so bad during the day. PBC is plain hard, isn't it?!

[Yankeerose3 in reply to DonnaBoll]

I don't or didn't know that's the reason for the fatigue. My blood test have been coming back great and my liver Dr acts like I shouldn't be feeling side effects from it

[DonnaBoll Administrator in reply to Yankeerose3]

Whether someone has 'normal' lab results or has very advanced liver disease, it does not mean that you will - or won't - have fatigue. It is totally random. Even those who do experience it often have it at sporadic times. I hope your doctor really knows about PBC. He should know that there is no rhyme or reason for when someone has the fatigue. Some doctors, I truly believe, don't think there is such a thing as 'this fatigue'. They need to experience it for just one day....they might change their minds pretty quickly.