Ode to pbc

Oh pbc oh pbc what have you done to me.?its really rather strange you see the things that come for free.

The itch the scratch the nausea...such fun to name but three and all the while the people say.....you look so well to me.

Nocturnal..yes im know i am ITS ONLY HALF PAST THREE !!!!

Oh pbc oh pbc what have you done me ?The bowels oh dear ....ld stay well clear.its gas mask time i fear.

The aches and pains there in your mind so just put up like me.

The memory too is not so good its getting worse i fear.but if you tell the people that ...they say its just old age my dear......

But lord above ,good god ,good heavens above im only 53!!!

Oh pbc oh pbc what have you done to me ?they say i ll need a transplant soon that surely cannot be...

For all the while the people say you look so well to me.!!!!

From a very bad poet!!! Cazer.x

26 Replies

  • Brilliant!!!!

  • Thanks...just my mad ramblings im the early hours and i know its not a proper poem or amthing.cazer.

  • Sorry for lack of grammar it was 3.30 am when i wrote it!!!!!

  • Well done an wonderful piece on how many of use feel

  • xxx

  • Brilliantly put

  • Cazer,

    That was great. You say you did it at three am. I bet that if you worked on it every night you couldn't sleep that it could be something that gets posted for all to see on different liver websites. You would be famous!!

    You would be published!!

  • Wide awake again not sure what tonigjts topic should be ?? Ha ha.

  • Infuriating isn,t it? Day 5 of no sleep for me too, Wk 10 of hep C treat and gone from snoozing and no energy to no sleep and no energy! We cauld discuss politics or religion!!!! anne

  • Ha ha pretty hopeless on both of those...good at teenagers or gardening !!!! Its sooo......

    annoying being wide awake isnt it.

    People always suggest ways to fix it but nothing works for me apart from drugs..te he.

    What about you?

  • ditto, used to use valerian but told no herbal rems cuz of doggy liver. so desp for sleep rang out of hrs service told by polish guy to eat slice of bread ! anne

  • Dont know if its revelant but saw dietician at qe she was great...but said i need a snack before bed or will be malnourished by a.m

    Try antihistamime and sleep tabs

    Best wishes cazer.x

  • Thanks so much for nice comments....i know its not the best....just sort of what i was thinking.

    My hubbys is lucky i didnt include his snoring in it as that helps to keep me awake!!!ha ha.x

  • What a great poem. Sums up everything with humour. I agree with the line "you look so well to me". People don't believe I'm so poorly.

    Really cheered me up, thank you

    Julie xx

  • Thanks...ive had a lot of the oh realy you dont look ill even from family !!!

    I thougjt one of the worst was a close relation who suggested i have orange juice that that would sort my illness out.

    It was just laughable how ridiculous it was but unfortunately sums up the treatment we get.!!!

  • Hi, same here and the usual "you'll be ok as the Liver regenerates itself". When you have serious cirhossis things are different. Your right, we don't have it easy, when you have days feeling like you have flu, and a new diagnosis of something else is wrong just when you think it can't get any worse,that's why your poem cheered me up.My neighbour told me to start eating meat again (been veggie for 10 years) and I will be better. Lol

    Julie xx

  • You sound in a similar position to me.

    Even though ive been told i will need a txplant most people yhink its a piece of cake.im concerned about being eligible in the first instance then if i get on the list its a risky buisiness isnt it.

    There are a couple of my friends that are a bit more understanding but most people havent got a clue.

    As you say let alone that cirrhotic livers wont fix themselves

    Im not sure where the myth about livers fixing themselves came from ,i know some mild damage will heal but the rest is rubbish isnt it!!!

    Do you have pbc or another l disease if you dont mind me asking ? Where are you with it?

    Best wishes cazer

  • Hi jules sorry that was probably a bit personal.perhaps i should have left the pbc line out as i think it probably suitable for all liver disease.

    Maybe i could do spevific ones for each tupe as i sure they must all.have there own individual challenges.

    Yes i know im getting carried awayi know im not poet laureat(is tjat how its spelt?)ha ha!!

    I did read your profile as i think we may have talked before?

    I too love pottering in the garden if the energy allows but get very frustrated that i cant did the holes.we have been in this house 7yrs and its a new build ...and i put too many plants in ...well.my hubby did on my instruction....now evrything has grown amd i have a jungle but i love it really

    Hopimg for sun to do a bit of chopping back

    From one dodgy livered gardener to another best wishes.x

  • HI,yes we have spoken before. My diagnosis is cirhossis and last week another diagnosis of neuropathy. Yet more tablets to add to the 13 per day! My garden is very autumn now. Dead heads everywhere, in nèed of a good prune and wèeding. Like you I'm waiting for the word transplant to be mentioned at consultation. Probably living on a third of my liver now. What are you up to today. Sun is shining but don't feel like working outdoors

    Best wishes Julie xx

  • Hi ive been pretty incapacited for the last nearly 18 yrs and just this last 6months my ukeld has reached 51.

    My bilirubin has started to rise and albunin and platelets dropping......2 visits ago they said i would prob b put forward for listing within the yr ..not sure if that meant this calender yr or within a yr.

    Anyway this visit he said you definately will need a txp but we'll review in 3months..so here i am playing the waiting game just hopong im well enough to get on list as this is my latest fear.

    Im sorry youve had no mention of listing i understand the frustration completely.

    Best wishes cazer.x

  • Hi deleted my reply as it was on main page ..not sure what i did ...this may be up there too.

  • Love it❤️

  • Thanks very much...just my late night ramblings!x

  • You are creative during the late night🙂

  • I tried again.last night ..

    A curious beast...not very good but heh ho i consider im among friends.x cazer

  • Ab fab!

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