Having another crappy night unable to sleep, constant pain, ears itching, mind working overtime, thoroughly exhausted.... at the end of my tether!!
Have been suffering with sleep deprivation, unable to control my pain for near on 3 weeks. If I get 2 hours undisturbed sleep thats it. Its all come to a head this week...I can hardly function...my heads in a constant fog......I can't concentrate, everything I try to do is taking me an absolute age....I'm in pain all the time, doesn't matter what I take I can't get any let up...I am exhausted all the time, it sounds really stupid but I am so exhausted I can't sleep, when I do sleep its as if my body says enoughs enough and just shuts itself down...I've just got to lie down and sleep (really have to fight against it in work to stay awake)...but its not a good sleep its just a cat nap, sometimes just about half an hour or so and I wake up again still exhausted. I've been really irritable and snapping at everyone, family that is... Hence forced to admit I am going through a bit of a bad spell....Gave in and went to see the GP today... (sorry yesterday) ..not the one I normally see...Had to write everything down not to forget as head like swiss cheese. At least this GP seemed to know about PBC unless he was a good actor that is (can't say the same of 2 locums I saw at the practice previously.. had to first explain to them what PBC was)... I was hoping that he would just give me something to help me sleep but said he did not want to go down that road yet because if we could get the pain relief under control then the sleep may sort itself out. I can understand where he's coming from ..but you know what it's 3.30am and here I am writing this...its taken me nearly 2 hours to write because my heads in such a state and I am chopping it up all the time...I feel so crap!! The GP has changed my pain killers though...name has escaped me..starts with an 'n'...I was on regular paracetamol (8 a day) with Tramadol as a top up..came off the Tramadol as making my head feel strange..swapped to Ibuprofen in between..not helping at all..been struggling for weeks..months actually. This GP not happy I am on regular paracetamol ..reducing it to 6 a day for the moment ..with the new drug twice a day in between. He's also given me Omeprazole to take as I've been getting really bad heartburn at night. So told me to give new regime a go for the next 2 months and booked in for a full blood test next tuesday. Hope they start working soon so I can get some sleep!!
I normally try and keep how I am feeling to myself..I don't want to worry my kids (25,23,13) or parents (they don't know I've got PBC or anything wrong with me actually..as far as they are aware I've got a bit of arthritis pain). Pretty much the only people that actually know I have it are my sister and her partner, my husband, my boss - needed to be told when admitted to hospital so need to know basis - 3 close work mates, Dr's, optician, dentist and thats it.
Its hard enough trying to comprehend whats going on with your own body without trying to explain to others. The only one I really open up to and confide in is my sister..my rock, but can't download on her all the time because thats not fair...so I keep it to myself..My husband doesn't really understand or want to know...I may be doing him an injustice but thats how it appears anyway.... when I do bring it up..which is not very often (can probably count on one hand the number of conversations we've had about it) it normally ends with 'you need to snap out of it... I get aches too.. ...try and exercise a bit....if you lost some weight' and when I say I am going for a lie down or to bed early its 'your unsociable' or 'I get tired too, it comes with age' etc etc
I am really sorry to off load on everyone
Written by
mumofthree
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Have you contacted the PBC foundation in Edinborough yet?They can help you,they know a great deal about our condition and even have a leaflet to help sufferers understand and communicate with family and friends.You certainly need a sympathetic ear and they will help you,big time.I found that volterol helps with pain in my joints and i also notice,having been diagnosed almost 2 years ago now that if i stick to a low fat high fibre diet and lots of water there is a very noticable decrease in the itch,and also the ache in my back behind my ribs too.I hope this helps as you definately need some answers,i hope that in time you will get more control over your symtoms and feel more like yourself again,i certainly did,have patience and be kind to yourself .
Thanks for your support. I've got the compedium, GP and Patient leaflet, did not know there was another. I don't normally speak to anyone, my mind is such a mush I can't concentrate properly... I know what I want to say but either can't get the words out or loose track half way through a sentence.. I find it so embarassing!!. Not only have I slowed down physically but it seems mentally too. I normally write everything at least then its not showing how slow I am..by the end of this it will have been cut up and swapped around so much...thank goodness for cut and paste!!
I have been pretty good controlling symptoms until lately...until every now and again I get what I call 'an episode'....thats normally when I've over done things and tire myself out...I have a good sleep and get back to so called normal...but this time my pain is troublesome..maybe I've got too used to the medication I'm taking and need the change...but my memory/concentration is a worry too. Hope these new drugs will kick in soon!!
I am sorry that this has ended up being such a long answer!
Firstly, 'the compendium' from the PBC foundation is a fantastic document. You will find a lot of information that will help you to explain PBC. It's in plain english and it has tips about living well with PBC.
To answer your question about how you explain it to people, I have stopped saying PBC because once I say the word 'cirrhosis', people don't seem to hear anything else and they make assumptions about what I have and how I got it.
I follow someone else's advice from here. I now say that I have an autoimmune liver disease. People seem to understand that autoimmune means that it's not something that you have 'caught' and it's not something that you have done to yourself.
If people persist with questions - either because they are genuinely interested or because they are intending to wow you with their medical expertise (usually by telling you how to cure yourself, or what you 'should' be doing) I tell them that I have ''chronic non-suppurative destructive cholangitis'' - while they are trying to pronounce or spell that, I run away
Anyone that is truly interested will hang about, the rest will back off. I also try to remember that if people are offering suggestions, they are doing it with the best of intentions. Those that have any other motive, just don't matter.
It is different for the people who are close to me - I think they need to be reassured about what is wrong with me. I have tried to be as clear and as honest as possible because I know the people close to me have been worried. Having no information from me leaves them with a gap that they will fill through 'google'. If they google the symptoms, believe me, they will find things a LOT worse than PBC.
My kids (20 and 13), my friends, family and colleagues know that I have PBC. I am sort of lucky that I don't have a husband or partner to worry about. As far as work colleagues and 'minor' friends are concerned, I have decided that if they don't understand then that is their problem and not mine. I have enough to worry about.
I have explained it to my kids, family and close friends in simple and non scary terms and I have answered questions the best I can. I told everyone that it is an autoimmune liver disease which is chronic and slowly progressive and that the treatment slows the progress significantly so that it might not progress very much.
I have also told them that the symptoms and the progress of the disease are not necessarily related - I could feel unwell, sore and tired but that it doesn't mean things have got worse. It just means that I am unwell, sore and tired at that time. Having explained it in those terms, I have found that i don't need to discuss it much except when i am offloading to one or two very close friends
I have told people who are important to me that my symptoms mean that I can't do the things that I normally do. People close to me are beginning to understand that I am not able for some things. Anyone that doesn't get it, simply doesn't matter. They should know me well enough to know that if I can do it, I will!
I have the fuzzy head too and the overwhelming need to sleep. When I get the urge to sleep, I just can't fight it - it is almost like falling unconscious. So I stopped fighting it! Luckily my kids are still finding it hilarious that I can fall asleep in mid conversation and they have used it to their advantage occasionally. I have tried to make my routine work so that when the kids are around, I am awake and fairly compos mentis otherwise I will wake up having agreed to all sorts in my sleep!
I have developed a weird routine that fits the sleeping in - i drop my wee fella at school, get the bits of shopping in, wash the dishes, prepare the meal for later etc and then get my head down for a couple of hours. When I get up, I do what I can in terms of cooking the evening meal, tidying up, laundry and that kind of thing and then I sleep again. I try to have someone in the house when I am cooking because I am so easily distracted that I have cremated more than one meal. I do very little in the evening and then sleep as normal at night.
My house is a skip but in the grand scheme of things, i would rather have an untidy house than be in bad form and sniping at everyone. How you develop your own routine is really down to finding what your own priorities are. Your routine can be as weird as you like, as long as it suits you!
I have quite a lot of pain and itchiness. They are manageable compared with the tiredness and brain issues because I normally use my head so much. Everything I do in my life seems to be brain related - work, study, reading, writing. I can't even read a book. (I have just noticed also that I have gone from being a great speller to having to look up the spelling of 'unconscious'!)
Finally and maybe the most important, work on your sense of humour because that will be the thing that gets you through many days. When I can joke and laugh about it in a gentle way, I find that other people do the same
Thanks SC49 your very helpful...I'm not always this down honestly....just having a bad episode.... I too have to use my head a lot ..especially at work...I'm finding that I am having to concentrate even more than I used to....thats why I'm finding everything a bit strange at the moment and difficult to cope with.
believe me .. I know how difficult it is. I had to go off sick because I couldn't keep it up any more. I was becoming a liability because no matter how hard I concentrate, I just can't focus. I also can't cope with meetings because when there are more than a few people involved in a conversation, I can't keep the thread of what's going on.
What has shocked me is that although a lot of people seem to report it as a really debilitating symptom, it doesn't seem to be a symptom that is accepted by the medical profession - or any one else. I suspect that because PBC is associated with 'women of a certain age', there is an assumption that we should simply accept deteriorating intellectual function as an inevitability. It seems to be that it is seen as being part of hormonal changes. I simply don't accept that there isn't enough evidence available to put it down to 'time of life'. I think it is because the question isn't asked or if it is presented as a symptom, people simply ignore it. I think if I ever get my brain back, I will do my masters dissertation on it!!
Don't worry about being down - it happens to everyone at some time or another - with or without PBC. And don't be afraid to tell your doctor. That's what they are paid for!
I have never met anyone of any age who doesn't have bad days. I saw a thing by Stephen Fry which I will post if I can find it.
He says that moods are like the weather - you can't make it a better day by simply wishing the rain away. but you know that a good day will come.
Hopefully you will have a better day tomorrow. And if you don't, you know that the good day will come.
Stephen Fry seems to be such a lovely lovely thoughfull and caring man to have taken time out to reply to Crystal personally, not many celebrities would have done that I am sure.
Thank you for your kind words. I know I won't be under this cloud for too long. My two eldest and their partners are coming for sunday lunch today.... as they do every weekend.... so I won't have the time to wallow... so the sun will come out today.
SC49, I enjoyed your explaination of how every day life is for you. I cannot spell simple words anymore. I can reread what I write, and won't even see my mistakes, until later. I don't believe this disease's symptoms have anything to do with the "time of life" either. I have began telling people that my disease is an autoimune disease, that is destroying the bile ducts, because I'm afraid someone will get the wrong ideal. I have never drank, and I don't want anyone to think I have Cirrohosis from that. I love that quote that Stephen Fry wrote. May I steal it?
the Stephen Fry thing is available on the internet so I don't think that he would have an objection to it being shared. I think it should be shared everywhere and often.
I am warming to the idea that loss of concentration etc would be a good dissertation topic. I'm going to think about that some more. The flaw in the dissertation plot will be my inability to think and read - but it will give me something to practice with
Well girls my brain is not acting as it should i cant spell cant concentrate and i have to have someone in the house (responsible) when i cook as i leave things on and cremate food is it time of life NO its not i only 38 surly i have at least another ten years before 'time of life' really kicks in its the liver thing as i have been calling it it just wears us out i so new to this but cant believe how much is going on in my body and what we going through and why people so ignorant like its like what has been said ignore the ignorant and take the support from those that want to. So mumofthree what i guess im trying to say is you ahve a rant and a bad day you entitled to.
Hope today is better and the sun shining Happy days xx
Okay, first I believe you should tell your family. I have six children ages 28-36 and they have known since day one 17years ago. I update them when something changes and really didn't have to until last year when I went into end stage and evaluated for transplant. Needless to say, after the initial shock for you and everyone, we really don't dwell on it. I understand all you symptoms, and I believe they get better in time. I used to itch so bad I would take a fork or knife to scratch and blood would start coming out. I thought I would lose it! I have really never slept well in almost 20 years. Usually a couple hours and then awake, and rarely the good rem sleep. I would fall asleep at my desk typing sometimes or in the middle of a conversation! Kind of funny when I think of it now Just take a deep breath and tackle the first thing making you the most crazy. I would try sleep because when you sleep even a little better/more it helps you deal better and keep your emotions on track. There are alot of things you can research you just have to apply them to your own life and see what works. There is also a website called PBCers.org. They were start here (USA) I believe, lots of helpful information too. I printed out the 'What is PBC' pages and it also shows symptoms etc, and gave copies to people who I thought it would help them understand better including my old boss. As I said, I have come into the end stage so I have had varisces banding, transfusions, gallbladder removed and all sorts of tests and outpatient procedures to keep up with now so I know when the time is right for listing for a transplant. It also helps me to read it every once in awhile. I also get copies of all my blood tests and so forth for my own records so I can take my time going over them and compare them to previous reports. It helps me to be active in what is going on with me. I will be thinking of you and hoping the best
Thanks so much for your reply its been very useful. I visited PBCers.org and printed out 'What is PBC', I'll certainly make use of that.
My two eldest sons are aged 25 and 23, neither of them have lived at home for a number of years and weren't living here when I was diagnosed in Jan 2011. I see them every week though when they come for sunday lunch and speak to them in the week. I told them on diagnosis that I had PBC and explained it was an autoimmune disease which affected my liver and somehow that had been causing me to have the joint pains. They knew I was undergoing tests for rheumatoid arthritis and the PBC was diagnosed as a result of those tests. I do not know if they have researched it themselves, we just don't discuss it. If I am not well and they ask me if I am OK I just tell them I am having a bad day and they understand why.
I have not mentioned the term PBC to my 13 year old son. I know I will have to tell him eventually, but not yet..I think he's too young. He knows I have joint pain because I have arthritis (diagnosed osteoporosis and osteoarthritis) and that I take medication for pain and stomach problems (my way of saying liver problems). I don't really think its worth worrying him unecessarily. I know if he hears PBC he will check it up on his computer because he loves researching for his school projects etc.
My husband, sister and her partner knows I have PBC but I have not told my mother and father basically because they are not in good health themselves. My father has advanced parkinsons disease is wheelchair bound and totally dependent on my mother, my sister and I, and carers who attend to his needs 4 times a day. My mother herself has many problems among which are rheumatoid arthritis, heart disease and asthma and is also becoming more dependent on us and carers who help her to wash/dress/undress. My sister had to undergo emergency brain surgery 7 years ago and nearly died. She was in hospital for 10 months and had to learn to walk again and has since suffered with epilepsy. So since then my mother worries about absolutely everything...she gets so stressed it causes her to have an asthma attack....she's had at least 8 this year...2 really bad ones that have put her in hospital. The family have always depended on me to be the only strong fit member of the family. So rather than cause my mother any more stress she has been told the same as my 13 year old.
Since I was diagnosed with PBC I have recognised that my mother shows many signs of PBC herself. She has undergone numerous tests over the years but PBC has never been mentioned. I shared my concerns with my sister but we have decided not to pursue a diagnosis for her because she's been through so much and we would not want to cause her more stress by having to undergo an invasive liver biopsy like I did.
Sorry I have gone on a bit, but thanks for your advise/info.
I am so sorry you have had to go through all that, it sounds as though your family is very blessed to have you. Please take care of yourself though, I know it is hard with all you have going on, but maybe just one day at a time. Prayers and hugs for you and your family
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Can't take this itch!
Just having a moan
Pain and loss of strength
Shaking and joint pain.
