New member advice needed

Hi there,

I am 46 yrs old, diagnosed with PBC exactly a year ago after liver biopsy and blood tests. Started on Urso and my blood results are now still raised but much improved.

I have two children ages 15 and 12 and I stopped my career as a nurse to be a full time mum. My child has mild autism and dyslexia and I felt it best to stay at home. Had planned to return to work when they were old enough, as in now.

Anyway, getting to the point...how do people cope with working when they have PBC? I don't work at present but I often find I have debilitating exhaustion! I feel I'm in a constant battle between wanting to return to work and then worrying I wouldn't cope with it! I'm only 46 and I want my life back!

Have spoken to my consultant. He's v pleased my blood results are improving and said he will see me in a year. That's great, but what do I do in the meantime?

Please could anyone advise me? I'm feeling very down that all my plans for my career and hopes that I had seem to be disappearing! I'm still young and want to grab life!!

Any advice on how to cope would be v gratefully received. Sorry if I sound whinging, I just need to be in control of this.

Best Wishes

Caroline

13 Replies

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  • Caroline-12, It's very difficult isn't it? So much does feel out of our control. I just posted earlier how my life now is like a roller coaster. I'm in control feeling "almost" normal one day, then staying in bed most of the day the next!! I'm sure it's much harder with children. Maybe, see someone... really, a good therapist, or journal it yourself. Getting it out here on this forum helps too. We all have lives that have been flipped over by our diagnosis. You're not alone. 3 1/2 months ago I was.... Happy, looking forward to a beautiful Fall and Winter. Instead my life these past months, like many of ours, has been filled with doctors, hospitals, blood tests, CT scans, MRI'S, Endoscopies, an ERCP, a biopsy, more blood work, and then more blood work, anxious weeks waiting on results...etc., etc. Probably sounds familiar. And I didn't even talk about the effect this all has on our family, friends, even our beloved pets, or that old life we once led. Remember that one? It's only been 3 1/2 months since my diagnosis. I'm still grieving for my old life. I have to say, finding this forum, this great group of ladies here, well it sure has helped me. I hope you can find some comfort here. Read some of the other posts. You may see yourself in many others on here. We are learning and coping with PBC partially right here on this forum. My thoughts and prayers are always with and for us all.

  • Thank you for replying.

    I have days where I feel on top of this illness...I go to the gym, walk the dog, the house is clean...then other days I feel it's a huge achievement just to get showered and dressed!! Such a rollercoaster isn't it! And it's on those days that the anxiety kicks in and frustration as I want to return to work! A constant battle!

    I still feel very ignorant about PBC and what to expect with it. I really do need to research it more and get some understanding of it.

    I pray for you, and all on here for good health. The support we can give each other on here is invaluable!!

    Best Wishes

    Caroline

  • Hello Caroline,

    I was diagnosed around 7years ago aged 45, when my youngest child was 12 ,although looking back I think I had symptoms for a few years prior to this.Fatigue was and is still by far my worst symptom.I found it very difficult at first to understand and explain.I read an article by professor Jones called a patient's journey,

    bmj.com/content/345/bmj.e7004

    This helped me realise I wasn't going mad and helped me explain to my family, this made life easier as once they understood they helped more and understanding myself I no longer fought the fatigue but worked with it.If I needed to sleep I do and I don't feel guilty or question myself.

    I did work full time,I reduced to part time eventually reduced to one day a week, full time just left me so exhausted I had no life.I also paid for a cleaner which helped.I carried on working part time in a responsible job for a number of years but now can't manage the stress and concentration of that, so have recently started a much easier job still part time now 2 days a week, I couldn't manage more.I am now 52.I would ideally like to work a couple of more years but will have to see how I get on.My condition having unfortunately progressed now to early cirrhosis,I intend to finish working in next year or so.There's no right answer,it's hard,I don't look ill and so people don't understand you must do what's best for you.

    Best wishes Jane.

  • Thank you for your reply Jane. Yes I can totally relate to your tests and tubes and investigations.

    I do wish you you all the very best with your health, it sounds like you've been through an awful lot! You sound like a strong lady and I know that's half the battle with this illness!

    Take care. Sending my best wishes to you.

    Caroline

  • Hi Caroline, sorry to hear you are struggling that's the path we walk with pbc, I was diagnosed 15 yrs ago when my daughter was born, I also have twins who are 11 one of whom is also autistic and life can be so hard sometimes, I don't have the life I had planned for myself but I have a different kind of life and that's ok, the exhaustion is so hard and people don't understand it , take care of yourself 🌸🌸

  • Hi Caroline 12

    I was only diagnosed with pbc in July. The diagnosis came not long after I had an operation to have my gall bladder removed. Not sure if I was quite poorly when diagnosed or whether I struggled to adjust to going on the Urso, but I took some time off from work. Initially thought I would have a couple of weeks off. However I have only returned to work in the last few weeks. My recent appointment with the Consultant showed a slight reduction in my alkaline phosphate levels. So with also being more used to the meds I decided to give going back to work a try.

    I used to work full time in a stressful occupation. I often worked long hours and brought work home. I have returned to my employment on a phased return with reduced hours. I have only been back a couple of weeks, and I am working 15 hours over 3 days. Working Monday, Wednesday and Thursday. Early days but it seems to be working for me. I was really apprehensive about returning and was worried about how I would manage particularly on bad days when I feel exhausted. My Gp and Occupational Health advised me to start later in the morning, as I seem to suffer really bad nausea particularly upon waking.

    I am trying hard to look after myself eating healthier and exercising. I also go to yoga which I definitely think helps with relaxation. I seem to be taking things a bit easier and trying hard not to stress about the small stuff. I have teenage daughters, so trying to ensure that I reserve some of my energy to spend time with them. I think it is really important to think about what would work for you and to factor in time to recover when you are tired. There is a Governmnent Fit for Work scheme which provides an assessment and advice on returning to work by occupational health advisers (in the Uk). You can be referred by your Gp and they may offer suggestions on how to manage your condition when you go back.

    Maybe with a supportive employer who is flexible enough to think creatively about supporting you back into work, your career plans can be realised. If appropriate explore other options such as opportunities to work from home or shorter days. I also have recently had counselling which I think helped me to cope with low mood and anxiety particularly around managing my condition.

    I do have concerns about what happens if I feel stressed out at work, as reducing stress is a given when your immune system is impaired. I am hoping the reduced hours will.limit my exposure to it, therefore making it more manageable. As I said it is still early days for me.

    Good luck I hope that things work out for you. Going back to work has given me a routine and for me makes me feel like I am part of the world again.

    Whatever you do, please put your health and family as top.priority.

    Go grab some life!

    xx

  • Thank you so much for your reply. You have really helped with your guidance and I will take on board your advice.

    Best Wishes to you

    Caroline-12

  • Hi Caroline 12

    I could really relate to your concerns about returning to work, as I really struggled with being at home all the time. I got to a stage where I felt overwhelmed about the prospect of returning to work.

    I now have an open mind, I am just seeing how things go. If it ends up not being right for me I know I can look for something else more suitable. Sometimes life throws you a curve ball, but at the same time it helps you to focus on what is most important to you in your life.

    Take care and stay healty

    xx

  • Thank you so much to everyone above who has replied to my post. It really does make a difference to know others understand and I feel I'm amongst friends here on this forum.

    I wish you all the very best as you continue on your own journeys with PBC. The support on here is invaluable

    Caroline-12

  • Hi Caroline

    I'm 45 and recently diagnosed , I work full time and have a long shift pattern of working 56hrs one week then working 24hrs the next then that repeats, I suffer badly with fatigue and some days I wonder how I can continue like this but financially I can't cut my hours. Occasionally I am not too bad but mostly just getting showered and dressed is exhausting , I do what I can , I bought a one pot pressure/ slow cooker to help with making meals which has been brilliant, I use the dishwasher, tumble dryer & a heated airer -anything to make housework easier, I might manage bit housework each day if I can but I don't stress about it if it's not done, my husband is great and does a lot so maybe try and get your kids to help too, or as someone else suggested hire a cleaner. If you want to work then try it and see how you get on , you could try volunteering for a short while just to see how you manage or even consider working from home in some way. I have pbc but I won't allow it to define me but I have accepted my lifestyle has changed . Best wishes x

  • I feel reassured that it IS achievable, thank you! You sound as though you are doing remarkably well despite the awful fatigue and that has given me the boost I need.

    Thank you! 😊

    Best Wishes,

    Caroline

  • When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature, as well as Ulcerative Colitis, another auto immune conditon. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

    It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

    Warren

  • Caroline

    There is not much more to add except knowing one more person here feels for you. I was diagnosed 21 years ago at 40 I took the Urso as described and my liver functions went to normal I was lucky

    I continued the Urso and forgot about why I was taking it since blood tests are great and I'm basically symptom free.

    It wasn't til I stumbled on this group that I realized the symptoms the Drs couldn't " fix" were related to the Pbc !

    I sleep a lot , I push through when I have to and I itch ! But I'm grateful to manage the pain ( misdiagnosed as fibro myalgia )

    I'm fortunate the Urso works all these years but now my American insurance won't pay for it any more !

    It's a new year and as my mom always said " glad to be on this side of the earth "

    Bonnieanne

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