PBC Foundation
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Feeling sorry for myself

I feel so sad today im so so tired,even though I'm on modafinil I am off today from work and was hoping to achieve something in my house or in my garden. But instead I'm sitting here feeling really down , I would cry ,but I have no tears ( I miss my tears).I have sjogrens and under active thyroid as well as pbc. I am 62 years old and I just want to retire my work is full on for eight hours a day on my feet and I can't keep it up I don't get my two days off together. I'm absolutely shattered .I'm waiting to get a ct scan as my ultrasound showed enlarged nodes would this make any difference to how I feel .I'm on my own divorced kids all away from home . what's the point in this life,there's no fun anymore. Sorry for going on and on xx

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Flora,

Please don't give up hope. It is depressing. I miss the old me too. We probably all do. Find one thing that brings some joy today, just one... Enjoy it. Meditate, pamper yourself today. Pray, listen to music. Maybe make a simple list of realistic goals. Just one or two things you enjoy and can do today.

Stay strong,

Stella

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Thank you Stella xx

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Hi flora

Sorry to read you are feeling sad especially today. Tough having all three auto immune and very lowering. Is there any chance you could negotiate part time with your work? I am wondering what you do as you don't get two days off together and does your business have a human resources department that you could talk to about your condition. To help lift my mood I use my mobile telephone to listen to You Tube where you can find many useful meditation tracks which can be uplifting or help a person be positive. I have used this over the last 3 months (after a pretty tough time) and I find I am much more in control again now of both my mood and my smile.

Don't ever worry about going on and on, we are all here to support one another on the bad days as well as the good. As Ktltel suggests stay strong be kind to yourself.

:-)

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Thank you I'm usually a glass half full person people always say that I look for the good in everything around me , where I work it is just not possible to cut down .I gave up a job that I loved for 17 yes as I thought this one wouldn't be so busy boy was I wrong took a pay cut, and have to travel to get there they pay your holiday pay but you cannot take holidays its hard to get hospital appointment time off. I could go on and on again sorry I just feel worn out and sick most of the time also have to get up four hours before I start so as to get over my breakfast sickness and toilet routine cause I have to keep dashing away to toilet and I cannot do that at work.As I said its probably just a downer I'm on and no doubt it will pass so thanks again xx

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Flora. I used to have a very upset tummy. Spent lots of time in bathroom. Since I stopped the intake of gluten, it has made such a difference. You also need to take extra Vitamins A, D and K

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Hi, we all have good days and bad days, it's just the way we handle them that differs. I hope your day got better...

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Brummi. We have not heard from you for a while. Agree with your advice

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Enjoy napping and you'll feel better another day or a few hours. The point is, that you don't have to take care of anyone but you. That means if you need a rest then take it. It's about you and yur needs. I'm in USA. Where are you

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I'm in Scotland thanks xx

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Hi again flora

Having seen you are in Scotland I wonder if you are a member of the PBC Foundation (free to join) whether you could telephone them and see if you can get some advice on financial support and the Scottish system which I believe is a bit different from here in England. Although I think you have to jump through some hoops to get financial assistance it may be enough for you to retire early.

best wishes

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I imagine you are a strong women probably taking care of others. It is ok to feel bad!! This disease sucks! Its Always there! I understand!! I know when we feel low it seems as though it is a bottomless tunnel... dive in and come up!!

You are not a quitter, but try and take care if yoursel! and ask for help if u need it

Give yourself a break!! It will ger better!

Truth is YOU must try and find the strength inside. I know you got this!!!👍🏻

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I too am alone with no family near me at all and none able to come if needed... one daughter with very young children states away.... I am 65 and diagnosed this year and had to retire in feb this year.... we are not alone .... have each other and all the wonderful support herr

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Grieve about it all you need to. Then go out and have some fun. Try to have fun every day.

Pam

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Hello Flora you have my sympathy I feel very much like this.I have got help with the housework so I can save my energy for what I enjoy, it has helped me a lot as I now have the pleasure of a better home environment without the frustration and exhaustion I used to have trying to keep the house clean!It you can possibly afford it it's worth it.I am only 53 I have had pbc for around 9 years and I find its a constant battle to do anything I also work but have switched to a less stressful job and part time.I would also recommend this if you can.You are doing very well to be working full time at at 62.

Best wishes Jane

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Have you had your thyroid levels checked recently. Sometimes the docs get so focused on our livers they forget about our poor old thyroid gland. Mine did.

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They check my thyroid levels quite often. Thanks for taking time everyone in replying its nice to know you all understand how it gets you down sometimes , I think maybe one of the autoimmune diseases has flared up .I just feel bad I'm having trouble writing this tonight my head is so very sore and I feel sick I don't know maybe its stress today at work was awful any way tomorrow s another day maybe it'll be better .love to you all xx

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Get some rest now. Tomorrow is another day. Hope you get a decent sleep. Good night

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Flora. There is always a tomorrow. 2014 my son, who was only 45years old died suddenly, and exactly 3 months later,my husband died. We were married for 49years. That was and still is the worst that could have happened to me. I paddle on but it is not easy. I just know I could not have done it on my own. Just look up for strength

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Rockie,so sorry for your loss I cannot even imagine how you feel. I know its just me feeling so tired that's made me like this and of course I'll come through it thanks for your thoughts xx

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Flora. I agree with LindyRich. My thyroid jumps from hyper to under active and then it affects your energy and a lot of things

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Hi, sorry you are having a bad time at the moment. I was diagnosed in February and still getting used to feeling exhausted. I hope you gain strength from this site, just remember you have a right to sometimes change from cup half full to half empty, you would not be human if you didn't,. You will come through this. Sleep,

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Thank you xx

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I wish I could give you a hug, but I'm a bit too far away, Canada. I get down too, didnt realize so many others did as well. I usually just curl up and go to bed and cuddle with the dog and it passes. Be good to yourself. Xoxo.

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You know funny you should say that, one of my co workers today gave me a big hug and it did help and I have a big fluffy dog to cuddle too. Xx thanks Linda xx

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Flora. Sorry you feeling so down. I have learned over the years I can never predict how I will feel tomorrow. We all feel for you and for me it has given lots of strength to know there is someone out there that understands what I go through. Very lonely disease because it is so rare. Where I live, most doctors are not clued up with the disease. I also have the autoimmune thyroid and some more,but the less I know the less I have to bother about it. Never wanted to know what Stage PBC I have, as there is no cure. Liver transplant only solution but not an option for me. So I have to make the best of what I have. Will stay in touch

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I'm male 39 years old have pbc, hypothyroid, reactive hypoglycemia and may be sojourn and soon I will have arthritis as well but I'm deter or sad I'm living the life. I eat what I want to eat, I drink matter of fact never stop drinking after I diagnosed..don't fear enjoy till you can..

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I know exactly how u feel. All i can say is we are number one. This stuff we have is real. I just hate it, because i don't want to do anything with my friends! It makes me mad at my self. I get frustrated alot. Mosly have a hard time saying , oh I'm doing fine, but on the inside , i am a mess. I pray for strength.i will say a prayer for u too

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You described it very well. I find PBC is a very lonely world. This site is good for me. I just wish we weren’t all so scattered & could meet one another & give hugs. We are the only ones who can understand what is happening with us. 😊

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