Aggravated

[Shulsey]

Hello everyone! Yes I'm aggravated!!! But, I'll start with something positive. My EGD & colonoscopy came back great. My varicies didn't need any banding (no bleeders) nor have they grown in size. The only thing that concerned the Dr was some inflamed areas in my colon that he took a few biopsies from. Now I'm waiting on those results. I feel like they'll come back fine as well. Now the only things I'm aggravated with are the URQ & joint/muscle pain. My hep started me on Lyrica to see if it would help. The only thing that did was turn me into a edgy monster 😤. So, here I am again playing tag team with his staff ,& getting no answers. I just want my 43 year old self back without feeling like I'm beyond my years. Then there's my fiancee who seems to be in denial, yet again. He acts as if I should be just fine because my results came back great. He goes from being helpful & somewhat supportive to "since you're not working things should start getting organized around here." I feel like he gets rather upset with me when I do nothing but sit in my recliner. This really doesn't happen too often. It's like he thinks that this disease is going to go away. Asks me why I act like I'm 80 (no offense intended). I'm not supposed to lift anything over 25lbs but I always seem to be the one carrying the laundry up & down my basement steps. I wish it would get through his thick skull that, yes, she is sick & yes she needs my help & support. I think this bothers me more than the physical pain I have daily without relief. His support would mean the world to me at this point. We've been together for over three years now. I've never hidden the fact that I'm sick. Told him about PBC before we were ever dating. Neither of us had any intentions of having a relationship together. He's 13 years younger than I, maybe this is one reason we aren't so "together" these days. Thanks for listening fellow PBC' ers. Blessed to have you all

[jane1964]

Hello Shulsey,

I was diagnosed at 42 with pbc and also felt like I was 80,and I know how hard it is.I couldn't get anything done and struggled with telling my family just how bad it is, at the time I still had 3 teenage children at home.I found this article helped I couldn't find the words and it was upsetting to talk to my family so I emailed the article to my older teenage children and my husband.This helped them understand and they all helped more Still sometimes it's hard it's frustrating to not be able to do as much as I want.

I straightforwardly ask for help now when I need it and it and when I am tired I don't fight it.My family have learnt that when I say I can't go on with something I can't.I decided to use my little energy for things I want to do,I didn't ask for this neither did you.My husband does help and is patient with my limitations.You deserve support and help ,as life with pbc is hard, as I said we didn't ask for this pbc we just have to try to have the best life we can with it.I hope the article helps.

bmj.com/content/345/bmj.e7004

Jane

[Hidden in reply to jane1964]

Thank you for posting that article. I want to give it to my terrible gp who prescribed antidepressants for the 2nd time in 3 weeks! She didn't even recognise me from 3 weeks earlier. I had looked up online and they cause very dry mouth etc so I returned the prescription with a note saying I hadn't filled it because I suffer from severe dry eye disease, dry mouth, skin etc. She had no record of this. I clearly told her I wasn't depressed but "frustrated". I also clearly told her it wasn't like I didn't want to do things but that I couldn't because of the fatigue. This article totally sums me up except that it doesn't point out how much I WANT to be able to things. I'm not in a dark hole, though there are days I really really struggle. I have always been super active. Unless you've experienced it, it's impossible for people to understand. Thus us a very useful article to pass to loved ones etc. It validates the fatigue as very real & debilitating. Thank you!

[jane1964 in reply to Hidden]

Hello, when I first read the article I cried as it so summed up how it felt.I think it's very hard with a disease no one has heard of and people can't see how we feel, I have found to be just honest and say how I feel helps. This forum also helps me as I can read and realise it isn't just me, as it can be lonely at times.I also find the pbc foundation helpful.

Best wishes.Jane.

[Shulsey in reply to jane1964]

Jane 1964, thank you for the article. I'm fixing to send it to all who care to learn. I worry that if I don't read it to my fiancee myself then he'll just dismiss it & "forget". I always try to explain the fatigue like the worst hangover you could imagine. But that still didn't explain it as well as your article. Thank you so much & take care ❤

Shannon

[welchd]

Thank you Shulsey. For sharing your feelings. I have been feeling that at times my husband doesn't get it and other times he does and is great! He even says at times he just forgets. Some times I think thats a cop out saying it and not trying!! To remember that is He remembers stuff from work no problem!

Actually that has given me an idea for another post!!

[Sharonis]

Thanks to all in this conversation, and especially for the article, which I'll be sharing with my peeps. Courage, my sisters in PBC!

[Hidden]

Ok so I printed the article & gave to my GP explaining I was suffering from extreme exhaustion NOT depression yet I was prescribed antidepressants 3 times in 6 weeks! The gp had not noticed she had already prescribed and I returned them due to them causing dry mouth eyes. I have sicca so can't take anything at all that would cause any further dryness. He took one look at it, maybe getting as far as the first sentence and handed it back to me!!! He then went on to say the antidepressants help with the fatigue. I then asked, "Really? They help with Fatigue?". He said yes. I then told him I had researched it & nowhere does it say it should be used to help fatigue. I can't believe he had no interest in reading the article! I'm going to send a DVD with the article in the post.

[Hidden]

He finally admitted he had no idea if it helped with fatigue.