I would love to be able to explain to people and family how tired i feel without the constant battle of being asked to go here and there.
Io work all week and finally cutting my hours but still i have to justify my tiredness.
Wish people would understand. If i had a broken leg i would get a lot of sympathy.
How do other people cope
I had to put my foot down with the takers. You have to put yours down too. If they don't understand and keep taking, even if it's your time or rest you can't be around them. Stress causes these diseases and our disease feeds on it. If you want to live they have to help you or leave you if they are going to hurt you. It's that simple. Parenting and running a household these days is a lot different than it was back in the days when we were aloud to raise our children to grow up to be respectful and responsible adults. This is about you now.
Thank you for your reply. Its not good i rest constantly on a sunday and have applied for some help to see if i can really cut back at work too. Im exhausted all the time and itch alot.
Can i ask have you got the over lap or just pbc
My smooth muscle is 1:80 and ANA neg. my AMA is 1:160 all enzymes elivated. Urso started to take them down but last blood test only my alp lowered and ast and alt elivated. My GI prescribed prednisone. I have a biopsy on the 6th. I'm still in the diagnosis stage but we know. I'm pleading with you to get the stress and takers out of your life. A taker will always take. You need to focus on getting your diet right, some form of exercise routine and a relaxation program. Don't think that just because you gave birth to it that it has your best interest at heart. Actions speak louder than words. Please make this you time and get as healthy as you can.
Thank you
Look into B12 injection or supplements. They have helped me with that heavy tiredness.
Annac b12 processes through the liver. To much isn't good. My primary is checking my blood tomorrow for vitamin deficiency and my enzymes and other potential issues that could interfere with my biopsy on the 6
Thank you. I had thlught about seeing my consltant about a bone test xx
Here's an article published in the BMJ (British Medical Journal) in 2012 (before the name change) about fatigue from the patient's perspective. I found it useful to send to my family and close friends so that they had a better understanding of what the fatigue might be like for me.
Another useful thing for me was when my consultant said PBC is a disease that effects the whole body, not just the liver. He said that the fatigue could be like living with unpredictably occurring jet lag and to remember that the brain can get tired too, just like the rest of the body.
I really hope that you get the understanding you need. Best wishes, Cx
Hello janine541
For me the main thing is the itch that is so difficult to explain or be understood and if I mention tiredness then I am told that at my age I should expect to feel a bit tired! People do not understand "stuff" unless it is happening to them. As you say a broken leg or even cancer which is more in the public eye is better understood and can be sympathized with.
However having said that can I point you in the direction of the PBC Foundation's web site. Their member's section (free to join) have some publications which you may find helpful. If you have children there is a section which is "resources for children" and there is a compendium which is regularly updated.
Although there are no recommended diets I believe I feel better for having changed my diet to a higher vegetable intake and lower bread and red meat intake. I do not drink any fizzy drinks now and I drink a lot more water. I take 2-3 cups of coffee a day (there has been a study confirming that coffee is good for the liver) I try to buy organic where I can. I have the very occasional glass of wine on high days and holidays but anything you put into your system or on your skin will have to be processed by the liver so best to keep irritants to as little as possible.
At present there is nothing to help with fatigue (I believe) however it is suggested that a little exercise when it can be managed will help with the fatigue. A pleasant walk or a little dancing or even a bit of singing can lift the spirits. I have just started delving into the world of visualization and guided meditation using You Tube which are tools that can help mentally put us in a better place. I suspect I would try anything, ha ha!
The PBC Foundation is currently running webinars but if you are unable to join them videos of the sessions will be placed on their web site in due course. I missed the first three but as the first one is already on line I have watched it and gained some useful information.
I notice that Annac has mentioned B12 injections and as a thought I was diagnosed last year with pernicious anaemia as well and have been on regular injections this past year which may also be a contributing factor to my feeling better than last year. Also for the itching I now take cholestyramine and rifampicin so the itching is less letting me sleep more although the itch is still present.
You will find lots of sympathetic listeners on here, we all of us seem to progress at different stages with different problems at different times. Hopefully you are on medication to help both PBC/AIH and will see a benefit.
I hope this rambling is of some help to you and hope that when you can lessen the hours you work you will feel a bit better.
best wishes
I totally sympathise with you as the fatigue drains me and when I'm not working I'm sleeping , I'm very lucky that I don't have kids to take care of as I don't know how I'd manange, I've got 3 dogs and they all love sleeping too and my husband takes care of the walks , I'm also so very lucky my husband totally understands the fatigue and he doesn't expect too much , However my work colleagues don't understand so much and when I try and explain i get a "yes well , we are all tired " kind of response which is fair enough as I think some people just won't understand , I don't go anywhere now if I'm not up to it but it has such an impact on family things , I even missed a funeral of an aunt recently and I know that was frowned upon by some of my family but you have to stand firm and not be pressured into doing things if you're not able. Have you tried showing them some information about the effects of pbc or even show them replies from here .
