bad few days

[Lisa30]

my husband and i had our first weekend away together in 2.5 years since our daughter was born, we went to a friends wedding in Wales. as you can imagine we were both really excited to have time away with our friends. unfortunately since we got back on Monday i have been really paying. i have never experienced tiredness like it not only am i utterly exhausted but my whole body aches i feel completely vacant and disorientated as well as slow speech. i drove to Wales which because of traffic took just over 5 hours on the Saturday, Sunday was the wedding which was a long day then i drove home Monday morning, so it was hardly action packed. being this tired and unwell has scared me, i never usually think about having pbc on a daily basis when i get tired most days i just tell myself anyone would be tired after the day I've had but this time its been awful. i really hope this is not what my future is going to be like. i am so frustrated with everyone because I've always brushed my pbc off and because i don't look really unwell everyone just says oh have an early night and your feel okay, if only it was that easy. 6 days after our weekend i am still exhausted and on a different planet. fingers crossed i am back on my feet in time. sorry to be to negative all i am usually very positive its just feeling like this has been a wake up call that i am ill.

[Hidden]

Lisa30

I just read your question and last night I but on my blog I was feeling really bad too. I am feeling exactly like you and feel like I can't cope anymore. I had 10 days off work which I felt a little bit better but Ive been back to work for 2 days and I feel so bad. I try to brush it off too because I know people don't understand so its easier to not say anything and try to carry on. I also am all aches and pains, my shoulder hurts really bad and my finger joints are hurting, Im going to see a rheumatologist in July, The doctor I saw was a locum and just looked at me as if I was making it up. If it wasn't for the fact that my bloods came back inflamm levels high he wouldn't of done anything.

I'm fed up of pretending I'm ok maybe I should think of myself more instead of worrying about what other people think.

Sorry to burden you with my problems too but I'm here for you and it helps to share with people on here. Hope you are feeling better soon. Take care xx

[Hidden]

I have 4 autoimmune problems and fatigue is a common occurence. It does feel very debiliating and i now have an irrational fear of being tired. I think the trick is to prepare yourself for trips/ work etc. I have develpoed a routine and i try to remember that although it feels horrible, i can deal with it. Other people dont understand it at all, but eating well, rest and something to look forward to seems to help.

[busylady]

Hi Lisa30,

You have had a really busy time so dont be too hard on yourself! I am exactly the same as you after a busy few days, it knocks the hell out of me too, so disappointing isnt it? I now have to plan that if I have time to go to a "do" I dont book anything else in and take time off work either side so I am not pushing myself too much. I think my friends sometimes think I am a pain because I will often turn down an invite to something if it means that I am out for two days in a row.............I just cant do it, and the payback is too much.

I really hope you feel a bit brighter soon.

Take care

x

[kosy2]

People not understanding PBC and all it's MANY effects on our bodies makes me feel like I am a crazy person. If I see one more set of eyes roll as I try to explain why I can't do something or how my brain is slowly turning into marshmallow I will start screeming and maybe never stop.

Isn't it enough we have to use all our strengh to fight PBC why do we have to fight family and friends as well? Some times I can't help but think that if I had cancer their treatment would be massively different. I am not looking for a pity party, only a bit of understanding. Where is it written that you have to "look" sick to feel sick?

So sorry to go on and on but next to being tired this part of PBC is the hardest for me to handle.

[catherine69]

Kosy2- know where your coming from, was at a social event 2 weeks ago today, eveyone was saying how well I looked which was great, however, I did not mention the fact that I had to totally rest the previous week and not do anything that would wipe me out or the fact that my sister had to do my hair as due to sore joints I now find it hard blow drying and styling my hair, but what really upset me was a comment from a person because I choose plain chicken from the dinner menu, you would have thought I had committed a crime, they screwed up their face and told me how boring I was, I could have told them that if I were to eat what they were eating, the pain in my stomach would have started before I was half way through it, but I said nothing and to be honest I could not be bothered to explain the reason why I choice plain chicken.

with regard to the tiredness my heart goes out to thoses of you with young children.

[Val02]

Lisa - I know just how you feel. For a while after diagnosis I tried to just carry on as before - I just ended up feeling soo bad! Im afraid with PBC you do have to learn to pace yourself and know your limits or you are going to run into trouble, and it can take a long time to bounce back. I appreciate this is really hard to accept especially for us with children where the guilt factor of not doing something is always there (and the guilt of being an ill mum is immense).

Hope you get back on your feet soon.

[Lisa30]

Thank you all so much for all of your responses its soo comforting to know that i am not the only person in the world to be going through this. Sophie, i also get pains in my fingers and hips another fustrating symptom of this horrid illness. I am so angry with myself for letting me get this down over pbc, but i honestly hate feeling so weak and not be able to do what my freinds can do. My poor daughter is having another quiet day in with her mummy, i feel so guilty. Is it normal to have weeks like this? Should you tell your consultant when you have been feeling this weak for over a week?

I know we all wake up and feel tired and tire very quickly but how often do you all have replapses like this?

[kosy2]

Since my dx with PBC I have done alot of research and what I found is with other autoimmune diseases (RA, Lupus, MS) the suffers have "flair ups". So my concluesion is that is most likely what is going on with us as well. It explaines why we have good weeks and bad weeks or for some only good days and bad days.

Most PBCers will tell you that PBC is so unpredicatable. One of the many reasons that make this disease so difficult.