Depression, not overwhelming, the looming thoughts. Is this making my fatigue worse?

[NotorDJP]

Hello everyone. For the newbies, I was diagnosed with PBC in March, got my stage in May, Stage 2. I have been on Urso now for a month now and have been paying more attention to the posts about those that the meds didn't work for. I am a person of faith, and I definitely rely on God for my dailing strength and mental optimism. But the looming thoughts, the ones that tell say, "What if urso doesn't work for you? What if you are one of those that go to cirrhosis quickly?" " what if you can't get a transplant?" What if, what if, what if. I guess I don't really need any advice as much as just some support. I still work a 40 hour week, volunteer at my church, and take care of my aging father and aging aunt (not day to day caregiver, just taking care of finances and emotional support). I'm 45 years old. I am not old enough to feel like I do some days. Will I ever wake up a morning and not feel like something is hanging over my head? I know my response to this is a choice and I know that I can do so much with this. But its still early days for me and I am not sure what is going to happen, nor have I come to complete peace with what is happening. I'm not depressed today, not really. Just, wow. Is this what the rest of my life is going to be? For the most part I am healthy. I get tired easily, but I can still push through. I just would like to know how much of this is PBC and how much of it is my attitude.

Also, did your liver still have pains, even on Urso? Mine went away, but it seems on my period and right after it hurts me. I assume since clotting factor is made in the liver, that when you are on your period, it has to work overtime.

Thanks for your thoughts and support.

[SC49]

It's the 'what ifs' that will bring you down. Tiredness will make you feel more down anyway but it's those 'what ifs' that will really make things worse.

It's early days for you - you have to give yourself the time to get to grips with what you've been told and to grieve a little bit. It's really important though not to let yourself get into the habit of thinking negatively about PBC. It will take a conscious effort to keep out of that particular rut.

It's perfectly ok to be angry/ frustrated/ down/ confused / shocked because the PBC diagnosis is a scary one. I think that every single one of us has had all these feelings. It definitely tests your positivity. However, as you say, you do have a degree of choice about how you respond to it. You really have to find your own way based on your own personality. I know a lot of people of faith choose to put it in the hands of God. That gives them comfort and allows them to be free of the worry.

My own way of managing it was first to find out as much as I could about PBC so that I could lay the worries down. I know now that the odds are in my favour because the drugs usually work and the docs have access to more technology than ever. I also know that life is generally unpredictable anyway.

We are very lucky to be this generation of PBC patients because there is a treatment which slows the progress, the survival rates are much better and the docs can see what's going on in our bodies and make plans/ take precautions. On top of that, we have the internet so we can talk to each other about what's happening and about what's new.

I work on the basis that I might as well make the best of the good stuff. I know it's a cliche but if you spend your time worrying about the what ifs', you're missing the good things that are happening round you.

I also tell the 'what if' voice to shut up every day. I distract myself with other thoughts - mostly making plans for things I like doing and ranting about political matters on Facebook.

I am so badly affected by fatigue that I can't do very much at all so making plans and ranting keeps me optimistic. I wake up every morning expecting the fatigue to be gone and go to bed every night believing that tomorrow will be the day. I know that sounds like a recipe for depression because there is so much disappointment involved but it works for me. I don't get disappointed - I just set it aside for another day. PBC is unpredictable so I accept that side of it and look forward to the day when the unpredictability falls in my favour.

Good luck and keep smiling

[sap7649]

Don't stress yourself to the max it's not worth it. I know this is much easier than it is. This condition can cause a kinds of symptoms and some people don't have any at all. You will survive I've had this condition now for almost 14 years.

Continue to live the advice I give is do things in moderation just stay from alcohol and smokes. I was never a drinker I smoke some a few years back but I now take a much healthier approach.

I just started working out again and watch my portion size with food it's crucial u must keep your weight down.

When newly diagnosed you r very uncertain of life what' is going to happen to me? Well I'm still here and living ! Stay strong take one day at a time !

Peace , sp

[Brummi]

Hi, It's about staying positive, not if. The illness affects people in different ways but we all have one thing in common and that is being positive. It is now just over twelve months since my liver transplant I am now back at work I am not too far away from my 66th birthday. Good luck and stay positive....

[NotorDJP]

Thanks everyone for your positive words. I appreciate them more than you can know. Its hard sometimes to deal with fatigue and try to stay positive. I manage people, so I have to be strong for them, upbeat, along with being upbeat for my family and friends. It wears on you when you don't have the energy to do any of those things all the time. I feel better today, but I'm not as tired today. I know a lot of this is mental as well. My mother taught me that illness was mostly a state of mind. My body will stop me sometimes, but my mind can stop me more than my body can. As the mind goes, so does the body. Thanks again.

[Tj2929783]

Hi Notor,

Many of the questions you ask, I ask myself as well. I think it is too hard to shut my brain off sometimes. I am a very logical person and have a background in analysis. Sometimes what helps when I am playing that "if" game, is to think it all the way through by doing an "if, than else" scenario. For instance, "If" this happens, "then" the outcome will be... or "else" the outcome will be... This is done all the time for flowcharts, but I find it helps me personally to keep my perspective in my personal life. It helps me anticipate what may or may not happen and then when it does happen, I know that I have already thought it through and what the outcome will be. For example, "If" tomorrow I am suffering from fatigue that I can't get off the couch, "then" I will make phone calls to friends to find out how things are going for them and feel encouraged, "else", I will catch up on the book I have been meaning to read". By doing that I can put a spin on how positive I want the scenario to play out. I hope this doesn't make me sound too odd or robotic.

Another thing that helps is what my mom always said. She said when you feel your worst, try to look your best (even when you are home alone). I know that when I am home and my hair not done and no makeup on and am in sweatpants, I feel worse. I look in front of the mirror and think, "wow you look like crap". However, on the days that even though I feel like crap on the inside, if I have done my hair and put makeup on, if I pass the mirror, I think, "well, maybe this isn't so bad."

Don't get me wrong, I definitely have my bad days too. It is only logical that we will have all those feelings of anger, depression, frustration, etc. But I think the key is to have the feeling, deal with it and move on. If we don't, we will get caught in a vicious trap. When I have the feelings of depression, it exhausts me. I figure, I am fatigued enough, I don't need to add that to my plate too. So I have my cry, grab a tissue and work it out.

I hope that some of this rambling can help, even just a little. :0)

~TJ

[NotorDJP in reply to Tj2929783]

No you don't sound robotic TJ I'm like that. I don't have the luxury of not getting off the couch when I feel bad, except when I'm off work of course. But when i get home, sometimes I stay planted and I will read or do other things. When I'm super tired I can't even read, can't concentrate enough to do it. But today I've felt better. I'm a little worn out now, but I've worked all day. I usually have to go home and rest for a bit, then I can get up and do more. I guess the worst thing is that my house has suffered some. I am not a clean freak, but I keep things tidy. I have tons of stuff to do, carpets cleaned, walls cleaned, curtains cleaned, windows cleaned etc (spring stuff) and the floors etc. The thought of trying any of those things just wears me out. I could have it done, but then I would have to get the house ready to have people in, which wears me out too.

So I guess the person with the cleanest house doesn't win a prize at the end of their life, so I will have to get over it!

[Tj2929783 in reply to NotorDJP]

I know what you mean about the house cleaning. I wouldn't say I am a clean freak either, but my days of Saturday morning blitzing the house are certainly over. Now I feel like I just plug away. Still lot of things just don't get done. As far as people coming over, just remind yourself that they are there to visit you, not your house. I guess that is the great thing about internet, we can visit with each other via posts and not have to worry about what our houses look like. hahaha

[NotorDJP in reply to Tj2929783]

I had a friend pop in last night and she is suffering thyroid issues, so we talked about being tired and I showed her my dusty side table. She wrote dust me in it and we laughed. Yeah, they are there to visit you not your house My husband and I are kind of hermits anyway, we have friends and don't mind them coming over, but we aren't "entertainers" So I'm not too worried. My dad doesn't care at all. We don't live in filth or anything LOL. Just a little bit of dust here and there and not too clean floors.

[rynick]

For a long time i felt pretty much the same, It took me a long time to come to terms with the diagnosis, still do on a really bad day! However, positive thinking really does help. Every evening i will thank the universe for getting me through the day and pray for the strength to get through the day ahead and acheive all that I need to. Try to look at the positives in your life, but don't beat yourself up when you have a really tired down day. Sometimes you just need to go with the flow.

[Stub007]

I have had no side effects from Urso as far as I know.