THE UPS AND DOWNS OF PBC!

I have also recently had depression and my therapist (CBT) has given me some good worksheets to work on. One of them is a Weekly Activity sheet, which, you only fill in the NEXT DAYS' activities. By doing this, it structures your days not too far into the future AND you can add in appointments, meetings etc. But it must be a mixture of work rest and play. For instance, I structure when I go to the gym (just to get stamina back, not running marathon!) and then structure in rest for the next day (as I know I will be shattered!). When there are tired days, I listen to a talking book or listen to a relaxation CD when lying on my carpet or in my bed (doing this feels like you are giving yourself permission to listen to your body and not worry about things you cannot do/should be doing). You can look back on these sheets and see what exhausted you and what worked in keeping you active and busy. I myself have also found a sheet to complete for pain/fatigue as well. Over the weeks, you can look back on the completed sheets to see what causes you more pain/to tire more easily. It is really eye-opening. If you want to look at these sheets, go to getselfhelp.co.uk Website is great itself (have a look around) but click on the "Self Help" icon on the list on the left hand side and this will give you all the sheets - FREE. There are downloads as well. I have my brother doing the Weekly Activity sheet as he has just retired and at a loss what to do. It has changed him dramatically! It has changed my attitude to the condition and, more importantly, how I react to it. Please let me know if you try this and how it worked for you.

Best wishes for a happy New Year xxxxx

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  • Interesting reading your post Ginger_11.

    I am of the genre that I try to keep on the go during the waking hours as that for me seems to be a good solution. Unlike a lot with PBC I no longer feel the fatigue of it. I only really felt fatigued for the 12mths prior to and just after diagnose (Dec 2010). I did change my life somewhat before diagnose as I suspsected I might have PBC having stumbled across it when attempting to find out about problems with the liver as I was told by the GP that appeared to be the problem following abnormal and then slowly climbing LFTs. Several months prior to being informed I had started to change a lot of things that I could and over time I slowly started to feel much better.

    Started on urso Dec 2010 and though I did have ups and downs following taking it (initial side-effects like bloating and heartburn) I started to get improved LFTs.

    I am left these days with just the itch which at night can become a real irritation if I cannot sleep. Realised the last few months though that the itch seems to have actually not stopped me sleeping more and more at night but that could be the change of urso as I now take a different pharmaceutical company to what I used to do (due to a 300mg withdrawal) - my GP would disagree here but what does she know about the real annoyance of the itch and the odd side-effects that can come with taking different brands and generics of similar medication. I only take urso, nothing else.

    I find that in my free time my husband and I just take off out somewhere and I find more often than not I just do not have to drag myself out like I did back in 2010 due to feeling fatigued and tired all the time.

  • Hi Peridot, I do think that having a positive outlook on PBC like yours, does help. I have the condition, I cannot do anything to get rid of the condition, so I will carry on with a few adjustments (which may change over time as the condition progresses) and let it be part of my life.....not take over it. The self help info I mentioned has changed the way I look at it and I am taking charge of how I react to it. Yes, sometimes I will be utterly exhausted, and I will just go through that, but I come out of it on other occasions and when I feel better, will do some activity. I use my activity sheet for when I feel both exhausted and well. I cannot believe the amount of things I have done over the last three months when I look back on them. Okay, there are days I have written down where I did nothing, but even then I really did - I read, watched dvd's, listened to cd's, did puzzles or just relaxed. The trick is to not feel guilty about the bad days, they will happen and you can roll with them. On good days, getting out and about is vital. For the bad days, local libraries do audio books if normal reading tires you. Here you can close your eyes and let your imagination go whilst you are being read to. What I am trying to say (muttering on!) is that even on bad days, do stuff that won't tire you out, but do something. Your body may be tired, but your brain may not be - it still needs to be entertained!

  • Hello Ginger_11.

    It is true, go with the flow of PBC and not let it rule your life. At present I am pretty stable.

    I love reading books, have managed to clock about 2 per month up over 2013 (normally borrowed from local library) but unfortunately for me there is only certain times I can actually sit down and read these days. Early morning is best. I find if I sit rather still later in the day and evening I find I start to feel prickly.

    I wouldn't even consider going to see a movie these days, never felt comfortable in the seating prior to 2010 diagnose but now don't think I could sit still in a seat long enough to enjoy a film and given past experience with teenagers spoiling the film anyway with loud talking and mobile phones, I'd rather just not bother now.

    But there are still lots of things I do that I used to do (I like art and also a bit of handsewing (I am forever doing the odd bit of embroidery, adding embellishments, etc to second hand bags, etc or making my own greetings cards, making jewellery, editing digital photos, etc), I still do these things, find they are that bit more occupying than just reading a book.

    I've listened in the past years to 2 audio books but found my mind started trailing off so I kept missing what was being read so for me that isn't something I can actually do.

    During 2011 I did have my own little book that I used to take note of when I was itching, perhaps what I had consumed during the day but failed to find out if there was some pattern or something that might have halted the itch but unfortunately not so gave up and just got on. I do feel I am fortunate in a way that I only tend to itch at night but it never seems to feel like that if I wake up the following morning after having several hours of broken sleep due to waking in the early hours, then feeling the itch and not being able to return to sleep (like last night).

    I do not think about what the future with PBC could hold for me. My thoughts there are I'll bother about that if I ever get to it, can't see the point in worrying about something that may never be.

  • Hi Peridot, I too, do water colour painting. You can, for a small fee, borrow dvd's from your local library. There are some very up to date films there.

    My specialist said that the condition is individualistic in that it progresses differently from person to person, so who knows what or if anything will happen in the future? Not worth the negative thoughts. I think occupying your mind is the key, so that you stop thinking about it, which brings in negative thoughts.

    I do think the itching is the Urso though, as I had none of that before I was diagnosed and started taking it. E45 Itch Cream has always been my friend. Can get this in any pharmacy. Worth a try.

    I do think though, that the itching is a nerve reaction under the skin, which is the drug side effect - the drug after all is a bile acid itself and is trying to protect the inflamed bile ducts from clogging by enabling the duct to clear the yukky stuff through the body's' system. The body's reaction to this may be the itching. Yabbering again!!!!!!!!!!

    Happy New Year to you and all the other members who read this (if they are still awake!)

  • Hello again Ginger_11.

    Yes I also borrow dvds and cds from my local library in town, have done for around 30yrs now (well all those years ago it was LPs, tapes and videotapes!). I find my frustration with my library is that being all computerised these days, there are often flaws with the system. I was to renew a book due back early 2014 the other day and can do online. For some reason the system started taking days away rather than adding them! When I went in yesterday when it re-opened, I was informed I cannot renew the book as it has several reservations on it but I said there was nothing stopping me online, I did get a flashing banner saying my renewal had 'been successful'! That then caused a problem with the supposedly new renewal date, if I took it back after that date as stamped in the book, would be overdue and incur a fine!!! I did think that in the days of computers things would be simpler but apparently not! But then thinking this, my own GP surgery doesn't seem to be able to access or read thru my notes properly. The GP who checked the blood results end Nov., she rang me saying my LFTs were not right (???!) and I said they aren't expected to be and when I asked her for a few of the readings, I told her they weren't bad at all, I had my past ones in front of me. She then said she didn't have any other results in front of her, only the previous ones!!! I find things like this more irritating than having PBC at times as I do think left to the GPs without me wanting to know anything or finding out things, I don't think I'd have come this far in 3 years at all and felt quite so good unless I took note myself.

    I have tried the E45 cream but not found it of much use and though I occasionally use a bit of a cheap version of Aqueous Cream BP these days not something that is overly-useful I find. I have found that buying the E45 childrens' foam bath and then adding to a bath and then throwing in a half small drum of Epsom Salts seems to be a good thing to bathe in. I have found I feel better bathing early morning as opposed to later in the evening for some reason. I also bought some pure liquid soap a few weeks ago and that is pretty great in the bath. There are no additives to it and it has olive oil in it for one of the ingredients. I find that to be very good. I've also found rubbing a little of the White Tiger Balm at the base of the spine just before switching the light out to go to sleep can aid getting to sleep. You start to feel a coldness due to the menthol in the balm and for some reason that area seems to detract from feeling the itch. I find the itch bizarre, seems that the system cannot cope with different areas at once if that is understandable. I notice that when I feel the itch in one place, start to rub or scratch and then it seems to start some place else.

    You appear to be as quizzical as I am with regards to trying to fathom out certain things of PBC but in particular the itch. I still think that the urso has something to do with the itching not vanishing altogether if you were itching at diagnose as I was. It is thought to be the used bile salts in bile that are travelling via the bloodstream back up to the liver as used bile is then recycled or broken down as waste. My theory is that the salts acts like an electricity surge on the nerve endings and that is where we feel the itch at random across the body. I find later at night my feet and toes tend to feel itchy but are ok during the day. I reckon that is because my legs are at the same angle as the rest of my body and blood circulation can be that more sluggish in the feet.

    Although I am dubious about the New Year given that since 2010 when I was diagnosed each year there has always something occurred (my sister has been in hospital since middle November and won't be coming out for another month at least) but I do wish everyone on this site all the best for 2014. I have enjoyed reading postings over 2013 and look forward again during 2014.

  • I am not sure that PBC itching is Urso related - i have been afflicted by itching since i was very young ... long before i was ever diagnosed with PBC. I put it down to everything from soapy things, washing powder, food, particular fabrics - all sorts. i m 51 now and I have never ever worn make up because i thought that my skin was over sensitive. Seems i was very wrong.

  • Thanks for this Ginger_11. i will hopefully be able to make use of this info in the near future.

    I have started counselling few weeks ago and have completed a block of CBT. So far i am unimpressed (and that is putting it mildly)

    Peridot - for films I would recommend Netflix or some similar thing. Netflix is my link to sanity.! It costs about £5 for a months subscription and you can watch as much or as little as you want. There is no contract though you do need to cancel your subscription if you find that its not for you. If you forget to unsubscribe, they will go on taking the money out of your account.

    I love it because my concentration is appalling now. It lets me watch and if (when) i lose the thread of what i m watching, i can 'rewind' to look again. It is very very slow work for me but i have now watched 'The thick of it' all the way through and i mostly know what is going on! There are some good films, tv series and documentaries on it some very up to date and some a bit behind. You can usually get one months free subscription to try it out but again, dont forget to cancel if you aren't interested.

  • hi SC49

    Yes, I do believe that you have to work on your mind as well as your body with this condition. The website I told you about has a 7 step programme which may be of use to you. It's a full CBT therapy programme. My therapist just said if you need to dust, just do one item of furniture, not the whole room. You can build up on this when you are feeling able to deal with it. It's not about running a marathon, it's about taking every step that YOU can take.

    Never say " I should " or " I could", these start the negative thoughts that bring you down because you will never fulfil them. I will always plan my next days' activities. If it all doesn't get done, so be it. I will have done SOMETHING on the list, as opposed to doing nothing.

    I originally had Transaction Therapy (don't ask!) and it was really not for me but CBT was brilliant. Stick with it and it does get better. I have gone back to researching my family history. This has been fascinating (and helping with my concentration as well). Only a bit at a time. Arrowords puzzles are great for concentrating the mind as well (and not as mundane as crosswords). Yoga breathing is good for the mind as well. Mindfulness (being in the moment) is good too. Helps to relax your body (can help with sleep) - does need a bit of practice though.

    Also, a trick my therapist taught me - once you have set your alarm clock (and it should be the same time each morning), turn the clock face away from you. There is no reason to look at that clock through the night, as it wakes up your brain when you start thinking about the time and how you are not asleep yet - it works!!!

    I also have a set of coloured Christmas lights in my bedroom, and if I can't sleep, turn them on, look at them (because they are pretty) and clear my mind of thought and just smile. Works every time, I drop off to sleep.

    All of these things have to be practiced and learned, but once you have conquered them, they do make life easier, especially through the fatigue.

  • It's really good that you have found what works for you. Sadly i don't think any 'talking therapy' or anything like cbt or counselling is going to work for me. I've joined in all of it with a positive mind - I'm happy to try anything. Because of the nature of the work i do, I have seen plenty of evidence that it works and I use the techniques with the people that i have worked with sometimes to good effect.

    It's just not doing anything for me because they are telling me to do what i already do. the techniques that they are teaching me are techniques that i have been using since i started work about 30 years ago. Without them, I would have been 'burnt out' a long long time ago.

    No matter how positively i think, no matter how much i pace myself, no matter how i have changed my expectations, i still can't stay awake for a full day or concentrate on anything for more than about ten minutes. I still can't process new information. My memory is still shot. memory, concentration and alertness are all key parts of my job. Being awake is a key part of most jobs. My employers are expecting me back in work in about 6 weeks and I have no idea what is going to happen when i turn up on the first day and cannot do even my basic normal duties.

  • Hi SC49

    You are just going through a bad period (easy to say, I know, but I have been there too). Sad to say, lost my job over it the same month as being diagnosed- but you know, not having to behave like a robot whilst in work, has really turned me around! I must have been the only person in the pool of people who was happier to be made redundant than stay in the job. Whilst I am searching for work in a completely different area of employment (had enough of being a slave to the VDU screen), I have found time between job searching to enjoy myself. Some days, too exhausted to move, but on other days, visited museum, exhibitions, go out for a walk and a coffee, or just simply do what I feel like (i.e be in the moment"). I cannot spend 24 hours looking for work, that is impossible, so I do a few hours in the morning (2 max) and look on the rest of the day as mine. Perhaps, like me, having been diagnosed with this can mean that it is time to change your life and this is the catalyst for that. Both for the work we do and the things we do for leisure and at home. As much as we'd like life to return to "normal" that won't happen now, and anyway, was life actually enjoyable, or just a case of feeling safe and being on a treadmill? (getting a bit philosophical here!). It can be a great springboard for change.....difficult I know when in the throes of feeling down and depressed. At some stage though, there will be a time when your brain will say- enough of this, let's move on. That day will come, it just takes time, work and patience. It's a horrible experience to go through.

    I hope you keep looking for a therapy that will work for you, and not give up. The brain fog is frightening, scary and frustrating, You know in your own mind that you are perfectly capable, but can't get anything in order or to motivate yourself. You start believing it is you and not the condition, but it isn't. You are not losing your mind, it is simply having trouble processing information in order at the moment. This affects your emotions and leads to a downward spiral. All the best and I hope you find your mojo again soon. xxxxxx

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