Feeling guilty

Positive AMAs since around 2003; diagnosed PBC end 2015; aged 63. URSO has brought LFTs back into line. Lucky to have few symptoms apart from fatigue. Fortunately I'm retired now so don't have work to contend with and family are doing most of the housework etc. It might seem irrational but I'm feeling so guilty about not doing my share and somewhat resentful that my retirement is not what I had planned, i.e. active. I hope this doesn't sound petty and ungrateful. I know many others might envy my position but I wanted to parachute and bungee jump (really) and travel, but most of all I expected to continue making an equal contribution to the household, family etc. Don't get me wrong, my other half is not objecting although I'm not sure he understands fully about the tiredness since I seem well in other respects. I'm just finding it hard to get my head around this aspect and any advice would welcome

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  • Swinstan,

    Count your blessings... Yes. Try seeing a wellness doctor or a naturopath for supplements to help with fatigue. I can only pray that my PBC is as slow progressing as yours.

    Try to enjoy what you can do. How fortunate you are my friend. May you continue to keep on going nearly symptom free. ❤

    Stella

  • Sorry, I was hoping not to sound self indulgent and I do accept that many are not so fortunate as I am. My consultant and from reading up on the research (I was a Health Psychologist) suggests no clear solution to restoring energy but there is always the placebo effect I suppose. I too hope that PBC progresses slowly for you and others too.

  • Swinstan. I could not have given you a better reply than the one Ktltel has given you. We still have a lot to be grateful for. All the best

  • Why can't you parachute? I did both several years ago. I was attached to a Miami Florida fire fighter when I parachuted. I bungeed many times. There's a force with the bands that will spring you back up. I can see if you have a weak tummy and are concerned for puking, or you have the pain in yur right upper side around yur liver sac

  • It's the fatigue really - finding the energy to get out and do these things, although the prospect of being attached to a firefighter is enticing. I'm hoping it's transitory and will improve but putting the clean washing away has to be done in three instalments at the moment.

  • You have plenty of time to do laundry. What stage are you in?

    I'm getting somewhat better with my fatigue since my prednisone was lowered. I have another apt in two weeks at the Mayo. I'm really going to insist that something be prescribed for my fatigue. Maybe you can do the same

    However if I was retired and had the choice to do laundry or accomplish a bucket list item. I'm going for the bucket list

  • I think maybe I didn't explain myself very well. It's not so much the jobs that need doing I'm concerned about. Others are doing them and I contribute what I can. The problem is more in my thinking. I feel guilty that I am being waited on and looked after. It's not been my habit to run around after everyone else but we had very equitable relationships to date. Now I feel rather... redundant, a fraud, lazy, pathetic, etc. Please note I say feel, because when I think about it logically, that's just nonsense! Now I'm writing this, I wonder if this is part of coming to terms with the diagnosis that some have mentioned here. Becoming more dependent upon others takes some getting used to.

    PS Bucket list still underway - just back from 2 weeks in Egypt

  • Swinstan. Are you taking supplements i.e. Vitamins A, D and K. etc?

  • No. Are these less likely to be digested when you have PBC?

  • swinstan. I was told years ago to take A,D,E and K. I do not suffer from fatigue so much, but the itching is a big problem. I cut out all gluten and fatty foods an no alcohol and I seem to have the itch under control. Will never be completely rid of it, but what can we do

  • Thanks. I'll have to look into it. Keep well.

  • Hi Swinstan

    I know what you mean. I usually do all my own decorating/diy and haven't managed to keep up with what I've normally done over the last couple of years. My husband started decorating my daughters bedroom the other day and I felt awful not doing it. I just don't have the time and when I do I'm exhausted. I agree it's ridiculous to feel that way as if it was the other way round I would do whatever I could. It probably is part of accepting our limitations.

    But love the bucket list - I'm off to make one 😜. Visiting New York has got to be my top one.

    Best wishes

  • That's just it! I have had a hall half decorated for months and feel guilty it's not finished but won't let anyone else do it. And as you say, if it was the other way you wouldn't expect them to feel guilty. It does sound like we have to come to terms with it, and that's a bit of a struggle. Sorry you feel this way too, but nice to know it's not just me.

    And the bucket list is great - big or small things (and most are quite small), ticking them off makes me feel better. Good luck with getting to New York.

    Take care

  • I am also 63. Retired 6 months ago. I felt very guilty first couple of weeks, not being working. But, I got used to my new routine and free time quicker than I thought. I love it now. My husband and I share house responsibilities. But, if dust sits there a little longer, I don't care. I'd rather go for a walk. We worked long enough. I also didn't count on PBC being a part of my retirement (was diagnosed just at the time when I retired), but, it is is what it is. So, I am focusing on good things and take the bad things as given, and try not to dwell on them.

    All the best to you!

  • I don't think your being petty at all in fact reading your post it could so easily have been me writing it. I don't think it's about counting your blessings, it's more personal than that, it's like a lifelong dream has been shattered and your grieving for it.

    I saw myself being carefree enjoying retirement and travelling, but in reality the fatigue hit hard and a lot of my plans were shattered it takes some getting used to.

    I never thought at 63 I would be in bed by 8pm every night had it not been for the fatigue I would probably still be working for another couple of years yet. However I have many blessings, a husband and family who i adore and I now have two grandchildren I thought I'd never live to see. Just so disappointed I can't do more with them.

    Do we ever really accept the diagnosis I thought I had for eight years but that was when it never altered my life in anyway, now the fatigue has set in it's like iam starting all over again. I hope you find a way to do all the things that make you happy. Stay positive .

  • swinstan, you've been brave and honest in saying these things and that helps us all. I understand the guilt thing. I hope the replies you've had offer some valuable perspectives, and if I may add; the expectations we have of our futures lends us a comfortable feeling of control that we don't, in reality, possess.

    In truth we never really know what's around the corner, PBC or not, and the serendipity of life can be either destabilizing or glorious. I'm fairly certain that without my PBC I wouldn't see life in such glowing technicolor as I do, or be concentrated quite so much on valuing and enjoying everything. That doesn't mean I'd choose to have it of course! But don't ever lose your aim of having fun, just adjust it to fit your circumstances. Best wishes

  • Thanks to everyone for the comments. You've all given me something more to think about and factor in. My retirement and final diagnosis happened within months of each other, so it is interfering with my plans - not only for me but plans with my family. I had expected to be more active in helping them but this was my expectation, not theirs. I don't feel sad and sorry for myself that I can't do these things but guilty that I'm no longer contributing as much as I used to. And this is to the fun things as well as the chores. This is the silliness of it. Like I said - head and heart in conflict. Makes no sense but in truth, I am truly thankful for all the positives both in head and heart.

  • PS On a more humorous note, my husband has actually taken up ironing but that's something I never did! Life's too short :)

  • Hello Swinstan,

    You shouldn't feel guilty you have disease. You didn't ask for it you're making you and your health a priority. If loved ones are having issues with your lack of participation talk to them. If they dont seem to maybe your over thinking it. Energy thr life you have now and be thankful.

    I love that we all have Bucket List. Funny how this disease puts things into perspective. Tjis year I graduated with my third degree and im taking a cruise to Dominican Republic and Turks and Cacao. I use to run. I miss that. I know I dont have the energy to make a 3k.

    Connie

  • Hi Connie. Thanks for your comment. My family don't have any issues at all and when thinking about it I agree with all that you say - not my fault etc. so when I do think about it, it's okay. I still feel guilty though, like I should be doing this or ought to have done that. My theories are evolving as everyone contributes and maybe I still haven't quite accepted that energy levels won't let me. Someone here suggested that it's like grieving over the loss which makes some sense to me. Maybe I haven't quite accepted the inevitable yet but will in time.

    Re the bucket list (they're great things!), I originally had - get to enjoy jogging to keep fit. I accept the amendment now to enjoy activity to keep fit.

  • I believe it is a greif for the life we had. And your activity is nor will it be what it once was. I tried to get friends and family to understand that. I hear you have given up or you dont push yourself. And Im like no I know my limits now of what I can do and cant. You are your #1 caregiver. We are on an emotional roller coaster and we are entitled to feel our feelings.

    Good Luck

    Connie

  • Hi, Just wondering about your AMA numbers. Did they go up a lot just before you were diagnosed with PBC ?And what did your LFTs go up to when the diagnosis was confirmed? I still trying to get a confirmed diagnosis and some kind of treatment.

  • Hi,

    I'm not sure I've ever had an AMA count. Only told they were positive. It came over as either they're there (indicative of possible PBC) or not. They were there in 2003 but with no other indicators of PBC, so I have just been monitored annually. ALP and GGT went up slowly a couple of years ago and I was diagnosed finally in 2016 with ALP=361; GGT=510. Started URSO in Dec which has brought ALP and GGT down to acceptable levels. The main problem I have now is the tiredness and occasional itching on my face and down my throat, although that may not be PBC.

  • sorry to hear your not getting your retirement plans into action i have pbc and fibromyalgia as well and finished work at xmas due to fatigue i am 62 the last dr i seen at qe hosp thru the idea of fatigue out of window i cried buckets when i finished work felt useless old u name it i have now learnt to pace myself and also push myself because if u dont u wont its a lot about mind set so if u get to do your jumps (braver than me) and it totally exhausts u for a few days after then so be it at least the feeling of what u had just done will well out do the fatigue good luck x

  • I get it. I know where you are coming from and feel like I understand. I'm newly diagnosed and I understand feeling like you are not contributing enough I guess. I'm the mother of 5, ages 3 months to 17 years.

    I feel guilty as can be if I'm not doing as much as I used to. It kills me when I can't do something that feels like it is my responsibility.

    Just like you, my other half doesn't care. He would rather I rest when he's gone and have energy for him when he is home. I'm working on better managing my energy.

    I guess for me it is knowing, as some people have said here, you may have to choose, laundry or bucket list... or in my case, baseboards or bedtime stories. Right now I'm battling a cold and literally I have to choose one... I can wash the baseboards which are driving me crazy or still be awake to read bedtime stories to my 7 year old. My littles need their mama more than they need spotless baseboards.

    So... prioritize what matters. Save energy for your loved ones. Loosen up your standards, it may not be perfect and it does not matter. Forgive yourself for your shortcomings. Enjoy whatever time you have left with the ones you love. That is what I am doing anyway.

    Life feels uncertain now. I'm not sure how these diseases will progress but if anything, I've learned what is important to me and what is not.

    Don't feel alone though. I'm sure alot of us feel like you. ❤

  • Prayers for you & your family. Sounds as if you are overloaded but I like your way of thinking & the way you have prioritized. I should put myself in the same mindset. 🙏🏻💖

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