Someone slap me please!

I need to stop reading! I need to stop panicking and I need to think positively! I know all this but when I read things all I see is people having transplants:( I feel great with no symptoms not even any tiredness but I'm going to make myself ill if I carry on:( waiting for scan and some answers is very frustrating and I'm scared to death I won't see my kids grow up! Nobody else understands how much I'm struggling so someone tell me something positive please:)

16 Replies

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  • As you very well put it :) try to relax, as there are many many reasons for that. Talk to the PBC Foundation, they know and can really help. Just one thing, which I also know from the PBCF: only around 5% of the PBC patients get to need a transplant, so stressing yourself about that can do anything but not good for your health and general well being. May I wuote you - "I feel great with no symptoms not even tiredness"? ":)

    On pbcfoundation.org.uk is the Radio appeal made by Collette and in the Compendium the Foundation made, with their Medical Council, you can also find a lot of substantial reasons not to panic.

  • I like you went through all the panicking but it didnt last long because i turned my attention to reading more and more about pbc which had the opposite effect it has on you, it helped me to stop worrying because the more informed i was the better i felt, mainy because i was in more control. I think there is nothing worse than medical professionals baffling you with science but having read so much i understand what is going on. Turn it on its head, the way i see it if i am going to need a transplant then i will deal with it when it arrives until then i carry on as normal as best i can. Chill out there is no reason for you worry its just not worth it!!

  • Hello Moomin900.

    Over time you might adapt my way of thinking with this PBC thing as I call it.

    That is I switch off thinking about what could happen and get on with the here and now. It is true that for some of us PBC may spiral downwards (or should I say upwards given the LFTs climb?) but also for a lot of us it never happens like this apparently.

    Personally I don't want to worry about the future when that future might never come about and I end up being around until I am very grey and very old and I end up dying of something else even tho' the PBC will still be with me.

    Meanwhile, do as I keep on doing, try to eat well, reduce fat intake as much as possible but not altogether, don't get too stressed and enjoy your family.

    Please remember you are not alone out there either.

  • Hi Moomin900

    You know the answer.....be positive. You are asymptomatic so great. Enjoy your life.

    I have joint, bone and muscle pain and fatigue. I have some bad days but the majority are good. If I had not been referred to a rheumatologist and blood tests carried out by him showed I had PBC I would have carried on my life blissfully unaware I had PBC.

    Like you I have children (now 25, 23 and 13). I was scared to death. What did the future hold, did I have a future!!! I found it very difficult to accept I had anything wrong with me. I just wanted to hide myself away...bury my head in the sand...if I wasn't reminded of it, it would go away. The web was the worst thing for me whatever I read frightened me to death...so I choose not to read any more.... I still don't...only whats on this site or what I receive from the PBC foundation. I am in a much better place now and am determined that I am not going to let it get the better of me.

    Put PBC out of your mind and get on with your life, enjoy your family now because they'll be grown up before you know it.

  • Does everybody know about the Positive Mental Attitude workshops held by Robert Mitchell-Thain from the PBC Foundation around UK? As far as I know they will continue in 2013. Contact him directly and find out more, these meetings are tremendously helpful, too many say so I guess it's true.

  • I went to one of the workshops earlier on in the year. It was really good and I am glad that I went.

  • Moomin it really is natural to panic, I don't think anyone not in are boat truly understands that but you have been given some advice above by people who are also going through it...

    Information is power and it is wise to get the most up todate information as a lot of the older 'research' just doesn't hold water today. The PBC foundation does have some of the newest and most accurate info so make sure u read your bear facts and the leaflets etc.

    Relaxation techniques are so important to learn as Although some stress is good, excess stress can lead to all manner of problems....

    Ps Christina , according to latest bear facts the pma workshops for next year are only funded for Ireland presently .

  • You might be right, I just read in the Bear Facts that there is funding for some more next year... Bottom line, I heard they are really helpful so if anyone can attend, wherever they are organised, it could do good.

  • For me this blog gave the first help: a woman wrote: "I was dying 2 years after the diagnose, now I'm working." I was in panic for a few months, but it's over. First I counted symptoms, wich are waiting on me, now -- seldom -- wich didn't occure yet. From this perspective it's much better. Before the diagnose, I was a young lady, who gets so oft ill, have many health problems, for 15 years. Now it's over, it's only ONE illness, which can last many decades (I'm in touch with sy who is ill for 35 years. I don't want to be 93. 88 will be enough, if it goes like this. Keep being well, enjoy life, what is offering so much wanderful experiences!

  • Sg more: don't stop reading, just don't do this all the day. It's much better if you know, what is happening just now, but don't make "big plans" for the future with the symptoms, they will not come so soon. Most of them I await in wain. :D Sy wrote here a great thing: go with it, not against it. Yes! I call you "my colleagues" for making the THING more friendly. I'm thankful to it also, because it strenghthened my almost lost friendship with a friend. Keep being well!

  • Hello Moomin,

    i was diagnosed over 10 years ago only weeks after the birth of my second child.i too was so stressed and freaking out BUT im still here!! i have 3 beautiful boys , i own my own Salon and work 5-6 days a week.i am 43 yrs old and let me tell you what my specialist told me all those years ago..."you should not worry about this disease, you should get on with being a good mum, wife and live life to the fullest. You will more likely die from getting hit by a bus before you die from this disease." (great dr hey) So ive done exactly that.

    im not saying that its all been rosey, but when things get bad i go see her, get help, have some treatment and get on with life.

    i have to say LIVE your life and enjoy every moment coz a bus could come out of the blue!!LOL!!

    my Drs moral to the story is that there are greater things to worry about so dont waste precious time worring about this slow moving disease.

    Snoozy

  • SLAP!!

    Talk to us, Moomin.

    44 131 556 6881

  • Hi Moomin,

    Like you as of late i have been focusing on the negative and getting so stressed, i have to control my breathing with yawning??? I dont know why as nothing has changed health wise, I still feel the same as when i was diagnosed over 10 years ago. I do suffer with fatigue but feel im pretty lucky as I have a few other minor issues but nothing that stops me from leading a good life.

    Reading the above comments today has just given me that kick up the butt i needed, thank you all so much for the continued support and wise words. xxx

  • Thanks everyone:) I spoke to Collette as well and cried! She was so reassuring and I feel so much better! I'm going to view it like a disease like diabetes and alter some things in my life and lose some weight but I'm going to use it to my advantage! Maybe by finding out about it and being forced to be healthy and lose weight I can save my health from other problems that would have happened if I had carried on being unhealthy (does that makes sense)? So thank you:) will be coming back for more kick up th bums no doubt o we time:D

  • a kick up the bum is just what we all need sometimes... other times we just need a wee bit of TLC and someone to listen

    Don't be too hard on yourself - it would be completely irrational if you didn't worry a wee bit. As you say, a little bit of panic can motivate you into doing great things for yourself.

    Good luck and keep smiling x

  • Here is the slap you were asking for, read by all means but each and every reply can only be based on that persons illness. Be grateful you fell well, continue your journey of research but if if you really need answers ask your consultant or GP. Worry about what you can control and focus on your family. You will continue to be less stressed and good luck.

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