Feeling down.

[Kentay]

Will I ever get over the depression I have, since I found out I have pbc.

[Erinlynn]

I hope so! It hit me hard for a while, but I am now pretty accepting of it. I don't let it run my life and try to live normally. It does feel like a blow - and you need to let yourself deal with the feelings. Reading here helps - just knowing you're not alone is huge plus.

Please take care of yourself - and if the depression gets worse, let people around know you need help.

[Batatis]

Kentay, why should one be depressed if it is not in our hands that we got PBC?

Besides, compared to other illnesses, we are so much luckier! I truly mean it for once one is diagnosed one gets the proper medication and then one learns how to live with it. the fact that we have PBC does not mean we are dying; it only means we are relatively suffering. The best way to overcome suffering is to befriend it sometimes and to ignore it most of the times.

Shake off your blue mood girl, and go have some fun!

[Batatis in reply to Batatis]

One more tip Kentay, sometimes like in my case, depression could be due to mild hypothyroidism so please go check your thyroid by blood test and sonography. Yes both are a must because, again like in my case, small nodules may be present. I am only taking the thyroxine and the ursofalk as well as vitamin e for life.

[daff]

I dont let it run my life,i try not to think about it their are people worse off than me,i was diagnosed 11 years ago,just get on with life.

[Belgravia]

Hi. Have you Vit D levels checked. Low level Vit D may be a cause of depression & low energy. It's involves a simple blood test taken by your GP/Consultant.

Keep the head up! I have PBC 8+ years & yes there are lows - fatigue & itch don'think help. Try remain positive!

[teddybear7]

I was diagnosed last March & it hit me like a brick. I have come to learn that it's not too bad really and others are far worse off than me. I found the foundation a wonderful help coming to terms and it's helped so much with my general health.I got my weight under control & turned T total by choice & never felt better. I still have fun just take the good days with the bad & move on up. Wishing you all the best xx

[Brummi]

Hi, Overtime these down moments do ease off. I still get them but I try to do things that will cheer me up. One thing that I think is important is to be positive. Take care.

[Jax64]

Hi, I too am suffering from anxiety and depression, I was diagnosed by my GP in September, when I went to see the consultant in October he disagreed with the diagnosis and on Xmas Eve was told by the consultant that all my blood tests (AMA,ANA) were negative and that I may have passed a small stone. My Gp then apologized for the misdiagnosis and told me to life the rest of my life. I know I should be pleased but I have been on emotional roller coaster and am struggling at the moment to sleep eat and carry out the daily tasks. I am also very angry that I have been through all this then just to be told to get on with the rest of my life. Take Care

[GrittyReads in reply to Jax64]

So sorry to hear what a rough time you've had Jax. It's awful that these things still happen, and we all need to be supportive and sympathetic to each other through these periods.

However, I am so delighted to hear that you have been told you don't have PBC after all. It is great news, and I do hope that you can get through the terrible emotions you are feeling. Your anger, distraction and upset are perfectly understandable. Your life was turned completely upside down by a mistake, and it's hard to shrug that off and just 'get on with life'.

I hope you have got support, but meanwhile post on here and I'm sure some of us will try to help. Also, look after yourself, treat yourself, start small and build up. Try to build up a calendar of things to look forward to, things to do: almost a 'bucket list' for someone who has just found out s/he's got much more time to do lots of 'bucket list' things.

Take care,

Gritty xx

[Hidden]

Hello Kentay.

I presume it's not long since you were diagnosed with PBC. I was diagnosed back in 2010. I spent 9 months of that year wondering what wsa wrong with me after my first abnormal LFTs March that year which were taken due to itching for a few weeks. I was 45 when I started to itch, 46 at diagnosis and I am not long off becoming 51.

I think depression following diagnosis of PBC in our case can show itself in different stages. I stumbled across PBC via library book and then internet several months prior to diagnosis. I hoped I'd not got it and did so want it to be a temporary glitch due to working over allotted full-time working week, not being married long and settlling living together with my new husband so for me when I was informed I had PBC it didn't exactly come as a huge shock.

It saddened me that I had something that is currently incureable and that I will have with me for the remainder of life but at the same time I think it did hold some relief that I had got through the stages of blood tests, scan and hospital appointment (when I had the AMA blood test for diagnosis) without much medical invasion (some have a liver biopsy for diagnosis, I was fortunate I didn't need one).

There are ups and downs in the very early days following diagnosis. You have to give yourself time to let it sink in. I struggled at the beginning with the fact I was to take a medication (urso) for the rest of my life. I had always been anti-medications and even rarely took over-the-counter meds too or frequented a doctor like I have since 2010. For the first few months I had to get into a sort of routine taking urso, the temporary side-effects I did encounter with the urso but slowly I started to get on with life.

I think it is the unknown that is the scary part of being told you have PBC as for majority of us who are said to be in the early stages of it, we don't have any idea in the long run how it is going to be. It is said that more than likely we will just get on with life and something else will eventually get to us and not PBC but we can only assume that is how we are going to get along.

I found myself resolving that I would deal with things as and when and I wouldn't let it become my life. I've never been one for feeling sorry for myself nor having others having sympathy for me. I was widowed before I was aged 30 and left to raise 2 small children. Then 15 years later I met up with my now 2nd husband, we got married in a short space of time but before our 1st wedding anniversary May 2010 I had started to itch and was on the road to PBC. I actually told my husband at diagnosis that he could leave me if he wanted to as this was something I'd always have to deal with. Well it is now January 2015 and he is still here. I found things a bit tough at times with my husband in the early days as he never seemed to take it that seriously but after diagnosis and my first hospital appointment I left it to the hospital consultant to explain a bit about PBC. I knew it could lead to transplant but never informed my husband, the hospital doctor did this and it did give my husband a shock.

My husband and I decided long ago that we'd just get on with life. Both being in our 40s at the time, we have no idea how things might become so we spend as much free time as we can together and make those memories. I think if this PBC did eventually get the better of me then I'd rather have made the best of things now as opposed to becoming so down over it. It is difficult at night, I itch and some nights it is pretty troublesome causing broken sleep which then catapults over to the next day when I feel tired in the afternoon. But then there's the hope that the next night is better.

I had a few downs in the 2nd year following diagnosis with the urso. The bloods sort of came to a halt and I had a slight rise but then they dropped again and it's been like that ever since. July last year when I had the repeat bloods, they were pretty good and I'm doing exceptionally well with just the itch and the abnormal bloods still but things are pretty well balanced.

This week sees my repeat bloods and it is a time when I always feel on a downer as I never know until the results come through if I'm as well as I think I am or whether the GP will want me to go in and see her and then have to go back to another blood repeat in 3 months again. But I do think over time you do start to feel a bit more relaxed about the bloods and also once you hit the one year mark with PBC and then another and another, you do certainly let the guard down somewhat which I do not think is a bad thing at all.

Evaluate your life to what you have now and also think it could be far far worse than currently. Think of something you are going to do in the near future (a booked holiday perhaps) and look forward.

[GrittyReads]

Hi Kentay,

Welcome to the PBC Foundation hosted website on 'Health Unlocked'.

I see from your profile that you have only just joined the site, so I'm wondering if you have only been recently diagnosed. Try not to worry, PBC is generally nowhere near as bad as it can seem at first.

It can come as a huge shock to suddenly be told that you have PBC, especially if you had no idea beforehand that you might have a condition, and even more so if you've never heard of PBC. It is also much worse if your GP does not know much about PBC - many of them are still appallingly ignorant about PBC - or if they are not themselves very sensitive when giving you your diagnosis. About 7-8 years ago when my (then) GP realised I tested positive for AMAs (antimitochondrial antibodies), she just said 'You've got PBC - primary biliary cirrhosis. It attacks the liver, I'm sending you to see a liver specialist.' and hurried me out. It was just before Christmas, and I went home, Googled, saw some of the awful out-of-date sites on PBC (do not read them, many of them should be banned !) and thought I was dying.

Fortunately, I found the 'PBC Foundation' not long after, had a talk to Collette Thain (the founder), and she saved my sanity.

I don't know how you found out about your PBC, or how sympathetic your GP was - or indeed quite what stage you are at - but I do remember that it can be terribly traumatic. So I do sympathise and really encourage you to contact the PBC Foundation (if you have not already). There's a link to their website at the top of this page. Get the phone numbers and talk to one of their advisors, they are very supportive and sympathetic, and are used to thinking in terms of all sorts of cases of PBC, as they can be so different.

One of the problems with PBC is that it can be so hugely different for everyone who is diagnosed with it, and it isn't always easy to put ourselves into someone else's shoes. We all have such different experiences: of the condition, of our own pathway in finding out, and in how we feel day-to-day.

Some people barely have PBC (like me); others definitely have it, but barely notice it; some are bothered periodically by symptoms coming and going or worsening; some have bad experiences with their healthcarers; some have other terrible things going on in their lives and can already barely cope; some are quite ill with the PBC, some (or more) of the time; and some people on here (very few) have had liver transplants - yet are still able to be incredibly positive and supportive.

However, because all of us on here tend to perceive PBC from our own experiences, it can be difficult to advise others.

I hope this helps a bit. As I said, for many people with PBC it barely impacts on their lives, and it may prove to be like that for you. Do talk to the PBC Foundation if you have not already. Also, if you want to post again on here, why not say a little more about you own experience, so far.

Meanwhile, take heart from what Erinlynn, Teddybear and Brummi have said, and do heed what Belgravia says about having Vit D levels etc checked ... also what Batatis says about being checked for hypothyroidism. You should have been checked for lots of other autoimmune conditions when you were diagnosed, so if you were not, ask the PBC F about this.

Take care, try not to worry.

Gritty xx

[Rosehip19]

I do so agree with Gritty's comments above, and think she has covered most aspects. I would like to suggest one more thing. If you are in the UK do try and get along to one of the PBC Foundation conferences. It really underlines the fact that you are not alone, and you meet lots of other lovely people with the same condition. And as Collette once said "only the best people get PBC". Hang on in there, Kentay, it will get easier to cope with.

[liver-bird]

Hello - I am sure you will get over the depression - just give it some time. You are going through a period of bereavement because you feel you have lost your good health. I felt the same but have come to see that there are much worse diagnoses. Certainly you will have to take medication and be monitored for the rest of your life, but that is a small price to pay. Also, there are very clever people doing research and trying to find a cure or better treatments for pbc. Be kind to yourself - give yourself little treats and take comfort that you are not alone. Keep in touch with the group - they are very supportive and provide a much needed lifeline.

[cazz22]

I'm sorry you have Pbc but trust me as someone else said -it could be worse.i was thought to have pancreatic cancer so in my case it was a mixed blessing diagnosis-I wouldn't have been here now.find out as much as you can about Pbc-in fact make yourself an expert as the medical proffesional unless you are very lucky know nothing at all about it and then forget you have it.there will be odd times if you have an illness when you think about it.everyone has something waiting for them in life at least they know what yours is .live well and have a good life

[fluffpuff64]

Sorry to hear you've been feeling depressed. I think its fine to feel this way, and perfectly natural to go through this once diagnosed with PBC or any illness. Its how you deal with your feelings from now on. For me it was like a roller coaster from feeling low, and looking back how different my life is compared to how it was a few years back , before being diagnosed. But generally it is what it is, your still the same person and can still achieve most things if you want to. Gather as much info on PBC as you can and talk to as many people that will understand you and your suffering. This site is excellent for this and also the PBC foundation. Try and achieve things when your having a good week or a good day, and let yourself have a bad day , and think tomorrow is always another day when things will feel easier, no two days will be the same. Look at what you can change rather than what you cant.When negative thoughts come into your head challenge them, and look at the good things in your life , no matter how big or small. Life is there to be enjoyed with or without PBC.So on that note am sending you happy thoughts, and good luck.

best wishes, take care

[Kentay]

Thank you everyone for your comments, they really do help. I lost my father last April and a week later was told I have pbc. So maybe part of my depression is from still grieving. I blamed my fatigue on work, being a caregiver to my father, and having 4 children. I've always been an up beat person, but I can't seem to be that person anymore. I'm 52 years old and feel like I'm 90.

[mumofthree in reply to Kentay]

I can so relate to how you are feeling but given time it will get easier. Allow yourself the time to come to terms with both your diagnosis and your bereavement. There is help out there for you in the form of words of understanding from us fellow sufferers. The experience, advise an understanding from the PBC foundation and Bereavement Councillors.

I was diagnosed in Jan 2011, at age 51, and initially had a similar experience to GrittyReads - ignorant medical professionals, reading out of date/incorrect information on the internet, and would reiterate to stay well clear and try and stick to PBC foundation etc.

My diagnosis came about as a result of the findings of various blood tests carried out by a rheumatologist querying rheumatoid arthritis. I asked the gastro registrar who broke the news to me that I had PBC, what did that mean for me...he said I had an incurable disease of the liver, I needed a liver biopsy to confirm the extent of the damage and that I may have 3 years to live!!! I was totally devastated, all I could think about was that I was going to die, I would not see my children grow up, my youngest was 10 at the time. I had to wait almost 2 months for the final diagnosis. This time I saw the Gastro Consultant who was brilliant and was able to put my mind at ease. He said that even though I had PBC it was not a death sentence. He explained PBC was an autoimmune condition which at the moment is incurable but there was a medication (URSO) available which would help slow down the progression of the disease. He said my liver may never develop cirrhosis but even if it did there was always the possibility of transplant. He told me that with a few life style changes there was no reason why I should not go on to lead as normal a life as anyone else.

I am so sorry to hear of the loss of your father. I lost my father 2 years ago next month so can totally relate to your feelings of bereavement for your father. Unlike you though I had time to come to terms with my diagnosis before having to deal with the loss. Your PBC diagnosis could not have come at a worse time.

I can honestly say it took me a good year and a half to come to terms with my diagnosis as well as dealing with the ignorance and prejudices of others. I wont say it has been easy. I went through a rollercoaster of emotions. The first 6 months were the worst. I was in total denial, I believed if I didn't hear, read or speak about PBC it would go away. I just shut myself away. Then I plucked up the courage to contact the PBC foundation... I haven't looked back since.

Now I am happy with my lot. Health wise, I have good and bad days but the good days far out way the bad. I listen to my body... if I need a sleep, I sleep.... if I can't get everything done in a day... so what... there is always tomorrow. I am happy, my family are happy, I have just become a grandmother to a beautiful baby girl. I live life to the full and very rarely think about PBC. My father on the other hand remains forever in my heart and mind.

My thoughts and best wishes are with you. Look after yourself and allow yourself that time to grieve and come to terms with your diagnosis.

love

Cheryl

xx

[Jojowen]

I can really relate to your situation, Kentay. One of my very best friends died in February (I was with her when she passed) an in March as was told I have PBC. I had put down a lot of my symptoms to the fact that I was so worried about her. Now I feel weak, sad and nervous about losing the little energy I have. I feel that I can't really trust myself to push through things - sometimes there is just NO energy whatsoever. I have stopped making plans with people because I kept disappointing them and I never know if I'll be able to do what I have said I'll do (both at work and privately). I have a range of (minor) troubles that in themselves are not that bad, but everything adds up and ordinary life has become so much harder. I am so far away from the life I used to have.

I guess it is a process and that there is a lot we can do to live the best life we can. I have started juicing (inspired by Joe Cross), I add a glas of fresh juice made of veg and fruit to what I normally eat (I don't have much energy to cook and eating is not fun either) and I think the vitamins might make me a little bit more energetic.

So I am trying to embrace my sadness, find new ways to more energy and I am hoping that I will get better. To be fair, I am so much better now than I was a year ago.

Depression is rarely a permanent state of mind and the process of mourning meanders through different stages. What I would really like is a health professional thar could guide me through it, but I guess I haven't asked for that in a clear way. It is so hard to explain to people how tired I am, and I look well so they really don't understand - not even the consultant.

So there are good days and bad days, I am trying to notice the good days because on them I can still feel like me.

You will feel better, Kentay, I am sure of it, but maybe it is your turn to get some support.

Good luck!

J

[mumofthree in reply to Jojowen]

Hi jojowen

Like yourself and Kentay I too have gone through a recent bereavement - my father 23 months ago. But the difference with me is that I was fortunate (if you can call it that) to have been diagnosed 2 years before I lost my father and had already gone through that period of learning to come to terms with my diagnosis before being struck with the bereavement.

You will.... given time... get your life back, it won't be exactly the same, but it will be a life that you will be able to accept as being your new life.

When I was going through my denial stage I found it really difficult to admit that anything was wrong with me.....I had the joint, muscle and bone pain, I had been suffering with that for over 10 years. I had been tired for a number of years but had put that down to having 3 children, caring for my elderly disabled parents (my father was chair/bed bound with Parkinson's disease, my mother asthmatic with rheumatoid arthritis) running two homes, as well as also working part time.

I recognise now that fatigue is one of my main problems, and it is this that has caused me to make the most adjustments to the way I now live my life.

I was finding it more and more difficult to carry out every day tasks at home. I used to be able to clean my whole house in one go, not stopping until it was finished but then found I was getting so exhausted and it wasn't half done. I was irritable all the time because I was so tired. I would get this feeling as if all the energy was draining out of me and I would have to lie down and sleep, sometimes a 15 minute cat nap would suffice other times I would sleep for hours. Afterwards I would feel so annoyed and guilty because I had slept and could not complete a task. I also became the but of many a joke because I would fall asleep while talking, which my boys found hilarious and would play tricks on me.

At work I was having difficulty concentrating. It would take me longer to get things done because I was having to read things over and over again. Words would bounce around the page. I found I would forget what I was saying mid conversation or just couldn't remember simple words which was very embarrassing so would avoid meetings just in case I was asked to speak. It was really difficult when my energy levels dropped because the feelings would come over me without warning. I would have to fight against it and it would really take it out of me.

I had to accept that things needed to change after I collapsed in work. The doctor told me it was my bodies way of telling me enough was enough. I had been fighting against my symptoms for so long my body was shutting itself down. She told me I needed to learn to listen to my body. It has not been an easy thing to do, but now I know when I feel tired or exhausted.... my body is telling me I either need to sleep or I should slow down, if I cannot do all my cleaning in one day...so what...there is always tomorrow and I don't beat myself up about it any more.

6 months ago I chose to reduce my working hours from 3 x 8 hrs days to 2 x 6 hrs. I made the decision because I had started to become frightened driving to and from work. Some days I was so fatigued I would drive to work and could not remember how I got there. The 30 minute drive home at the end of an 8 hour shift was becoming more and more traumatic for me, my energy would drain when I got to within 4 miles of home. I was having to open all the windows and or pull the car over to the side of the road until the feeling passed because I feared I would fall asleep at the wheel. By reducing my working week to 2 x 6 hour days it has allowed me to continue working and working hours that are at the moment manageable for me.

You mention you would like to see a health professional but are afraid they may not understand because you look well. But have you considered seeing a bereavement councillor because your depression is not only because of learning you have PBC but is also because of the loss of your best friend.

Good luck and best wishes. Try and be positive things will get easier.

regards

Cheryl

x

[CathieG]

Having been recently diagnosed it's been good to read all these comments and words of support. My doctor believed for four years that the cause of my high liver function test results was due to alcohol because a scan was clear! I had even given up my favourite wine for six months!! Following more pain, fatigue and constant attendance at the surgery I was finally referred to the experts. Liver biopsy confirmed PBC which has left me in shock. I work full time but think I have no option now but to cut this in half because of exhaustion. I'm hoping that redundancy will be offered soon. I know that all these feelings are normal and I just have to work through them but I never realised how much this has affected me until yesterday. A colleague asked if I had the results from all my tests and I started telling her all about the biopsy etc. Suddenly out of the blue I was in tears! The realisation of what was going on suddenly hit me like a brick! Now it's time to move forward and make changes, the biggest one being more exercise . i want to see my grandchildren married before I go anywhere!!

[PBCRobert Partner]

First off, I would like to thank Kentay for opening up this topic. When feeling like this, it can be very intimidating to share that: to do so was very brave and I hope you feel better, Kentay, for reading some of the replies.

The first thing that comes to mind, when reading the replies is that you are not alone. Thousands and thousands of people are affected by PBC, and many of them are either here and/or members of the PBC Foundation. It is true, absolutely true, to say you are not alone (even if you do feel it sometimes). Recent research published that 1 in 3 people with a long term condition are also affected by depression. Even without the added issue of bereavement, these feelings are absolutely normal.

The second thing that jumps up from the screen as I read this is that many people here understand the grieving process that comes with a diagnosis of an incurable condition. Again, this is a common feature and one that this community understands very well. Time, itself, is a great healer; as is experience. Added to that, time will bring you knowledge and this knowledge will enable you to take greater control of your decisions, will help you to ensure your decisions are informed ones.

Thirdly, please do contact the Foundation directly. So many times, a single telephone conversation will resolve many more issues than reams of text. We would very much welcome the opportunity to help directly, so please feel free to call us. (We can always call you back or Skype you, etc to save your costs.)

Lastly, be kind to yourself. Treat yourself as you would your best friend. Treat yourself with compassion, with love and help yourself to make the best decisions for you.

Meantime, I am yours,

Robert.