Weary!!!!

Hi everybody, most days I wake up tired, today I woke up feeling so drained, no energy, I wonder if I will ever feel well again, I was diagnosed May 2015, not had another blood test until next week, also I am having an ultra sound on 20th June, so looking forward to having them, so I can see if I am better or worse. Sorry for my moan, but so pleased I can write it down and you all will understand. I am not usually a moaner just feel miserable today. Thanks for listening.

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  • Hello Sandie1.

    I take it you are taking the urso as we all tend to do when we are PBC diagnosed. Did you have the first follow-up blood check within a few months of starting the urso. I did back in early 2011 after starting the urso early Decmember 2010. In the early days of PBC I was having the bloods done at 3 monthly intervals. My GP reckoned would be OK for 6 months but I used to book in at 3 months anyway. Then early last year the GP said there was a sort of graph of the results from the start and was recommending me go in every 6 months. So I started doing that. A bit of a change (only slight) in one of the bloods meant I had to go back 3 months later (January) but I've not yet been in again for another repeat. I'll probably have that next month.

    You sound like you are experiencing fatigue in PBC. I had this back in 2010 and it isn't a nice thing to have at all. All being well I do think you need more time to get yourself back together following a PBC diagnosis.

    There is also accepting we have PBC. I know I had some pretty rough times in the early days (I would stay in bed all day the odd Sunday) but as more time started to pass and I was still alive and kicking I just resolved with myself to get on with living life. I didn't want to waste any of it. Not easy at times when broken sleep through the night due to itching causes tiredness come the following afternoon. I find the oddest thing about PBC is that apparently fatigue and itching are of no corrulation to how we actually are with it.

  • Hi Sandy1

    Fatigue is part of pbc I'm afraid the best advice I can give you is to learn to listen to your body don't over do things,rest when you need ,plan a head this helps also have your bloods checked for other things that can cause tiredness ie Hypothyroid ,Aniemia etc , if your over weight try to loose some I know exercise is not on your agenda right now but gentle exercise will help ! If it's any consolation I was very much like you when I first got diagnosed 7 years ago just standing up ,having a shower, drying hair ,walking up stairs , shopping etc was a challenge ! Eventually I gave up work this made a massive difference to how I am today much more in control of how I feel I was able to join a gym and build my exercise tolerance up and feel much better and fitter I won't say it's easy it's not I still have set backs if not carefull but on the whole have a much better quality of life .i hope this helps x

  • Hi Sandie. Having a good old moan to people who understand is why we're all here. I used to be all energy but like you have to contend with times when it's just not there anymore. It's hard to determine if it's PBC, hypothyroidism or just plain aging for me but I guess a combination of all 3 doesn't help. Like Peridot and Poppy say just don't be hard on yourself and accept some days will be better than others. Remember too that when you get some sunshine around you (if summer ever arrives) that it will help your mood and general feeling of wellbeing. Don't stress about the odd bad day - you get those even in full health. Adele

  • I think most of us will have had times when we've felt low, with this pbc and know how that feels. That's why this board is so helpful we can have our moans knowing someone will understand.

    I know at the moment I am finding it really hard to stay positive especially, when over the last few weeks I needed to be busy with a family event coming up and wanting to take part like everyone else, then finding I couldn't manage it due to energy levels, this really bought me down with a bang after getting really upset

    I found this helped.. I gave myself permission to have a week of resting up, not thinking to much about what I can't do, spending time doing nothing, I even had a duvet day (day in bed) and I am picking up slowly, so don't be to hard on yourself take each day as it comes for a while.

    I would mention the tiredness to your doctors especially that your waking up tired, there are other reasons that may need checking out. I myself had a lack of vitamin D. Take care hope you feel better soon.

  • Sandie1 I totally agree with each comment previously posted. As for taking the urso. Yes, if you are not this will help a lot. Theo years ago a I was diagnosed with autoimmune hepatitis stage 3 and when my numbers still would not go down with medication, my hepatologist discovered I had PBC stage three.

    Urso was added to my immune suppressant medication and I began to have much progress. However; both diseases were advanced when discovered and a few months ago I was diagnosed with cirrhosis due to them both. For some reason my Dr. then took me off all medications except for medications for Hepic Encephalopathy. Including Urso.

    Even though I felt this was not correct, in my H.E. stupor, I followed the advice and things have been much worse. At the advice of dear people here, I went back last week for more explanation for her reasons of taking me off urso. I was squeezed in to see her NP and she notice my Alkaline phosphatase had doubled, so she highly recommended to my hepatologist that I was put back on urso.

    I've only been taking Urso again for a little over a week and the extreme fatigue seems already to be clearing up. It may have even helped with the H.E. to some degree. I was also feeling very blue and even that has lifted. I also agree with what peridot mentioned about regular visits. You see I also had to go a bit of a stretch without a visit, perhaps 6 months for reasons of a far distance of a financial nature, but I wish I had found a way to have made it back sooner. It may have made a difference in cirrhosis and not cirrhosis. Now I must be checked ever 3 months with a sonogram for certain against liver cancer.

    I'm not trying to scare you, please hear my heart, I just don't want anyone to go through what I have due to a season of no bloodwork, Dr. Visits or urso. I'm so happy for you that you are able to get this done and I believe they will help you get back on track to making the most of your days.

    Btw: This week I drove myself to another Dr. Apt and met my brother for an enjoyable lengthy lunch. This was impossible for me even a week ago. I do feel being back on Ur so is helping me get back to "normal" or my new normal. Lol I'm so sorry I've written so much, but if I may, I'd like to share a poem I wrote about three weeks ago it is simple titled "Focus on the simple" The days I felt I could do little else, I've found myself writting poetry.

    "Focus On The Simple"

    Focus on the simple,

    on all that remains.

    For all is ever changing,

    so with grace do the same.

    Keeping all that matters,

    in a character that is strong.

    Letting go of painful thoughts,

    and all you know is wrong.

    Think upon what's pure and true,

    let the "Son" shine in.

    Rise above all hurt and pain,

    let hope rise up again.

    Hold on to the simple,

    to all that brings a smile.

    Let joy bubble up again,

    Though it's been a while.

    Return to the simple,

    when all else is gone.

    Find peace in quiet moments,

    as you watch a new day dawn.

    Be thankful for the simple,

    sometimes it's all you have.

    Build upon the simple,

    and in all things be glad.

    ~~~~~~~~~~~~~~~~~~~~~

    I have several others at writers network under my pen name ManyRivers. If you would like to follow the link.

    © ManyRivers - all rights reserved

    writers-network.com/members...

  • That is a wonderful poem, thank you for sharing!

  • I hope you feel better soon, Sandie!

  • Thanks for all your comments, well appreciated. Today I felt a little better, had a nice walk along the beach with Meg (my dog).

  • I know exactly how you feel your not moaning we all have to speak about it at times when your putting up with illness you have to be able to let it out I understand. Angela

  • It's good to have a bit of a moan sometimes and get it off your chest. I find my tiredness comes in waves. I will some reasonably good times when I try and make the most of it but then when I am having a rough patch I try not to be to hard on myself and just roll with it, getting as much rest as I can. Take care xx

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