Just need to vent

I usually don't vent but this is aggravating. I have stage 4 pbc have for the past 2 years. I don't sleep more than 4 hours at a time. I stay nauseated all the time. My eyes have started turning yellow and my skin is now gray. Unfortunately I'm not a good responder to urso. I stay tired all the time. What really gets me is my husband. He doesn't understand any of it and doesn't seem to try. All I hear out of him is if you would sleep all night you would feel better and not be so tired. I wish that worked. It would be great. But that has not happened in years. I cant explain it to him anymore or try to get him to understand it anymore. I'm tired of fighting him for my naps and not going all the time cause it just wears me out even more. I have went days without taking a nap just trying to get more than 4 hours of sleep it doesn't work. I have tried sleep aids the drs have tried sleeping pills. Nothing works. Does anyone else have this sleeping problem and nasuea problem? I just really don't have the energy to try to work it out with the hubby that I'm just about ready to leave. I'm mean really what the hell happened to throu sickness and health.

14 Replies

  • I'm so Sorry, I know how it is to be so tired but find yourself just lying there, you need to find someone who gets it you need some support, and I pray you get it and some sleep, sleep anyway you are an adult an a very sick one, you don't need approval

  • Hi. I think it is very hard for some people to understand things they don't experience. Sleep, perchance to dream! We can commiserate with you! Sleep has avoided me for years now. If I could only sleep and the nausea is just awful. Comes on suddenly and wrecks my day.

    I don't have an answer where your husband is concerned but maybe HE needs to read posts on here.

    God bless

  • Hi, I've never slept well. Before the PBC I used to clean during the night when I couldn't sleep, and worked full time. I think the first indicator that I was unwell is when I couldn't do stuff when I was awake at night. I also had to retire on health grounds as I could no longer maintain a full time career due to fatigue. I'm sorry your husband doesn't understand. That in itself makes dealing with PBC harder. I've also found that the more exhausted I am, the more I struggle to sleep. I think you need to do what's best for you and if that means you take frequent naps then so be it. My husband is really good however, he gets frustrated at times with my PBC. Perhaps your doctor could speak to your husband? My GP sent me an article from the BMJ which helped my friends and family understand a bit better. Here is the link to the article:-

    BMJ 2012; 345 doi: dx.doi.org/10.1136/bmj.e7004 (Published 22 October 2012)

    I hope it helps. Take care x

  • The article is worth reading

  • Dear Breeks,

    You are absolutely entitled to vent it sucks you are very sick and fighting the fight of your life. Yes bad sleep is part of that disease. Now I am going on a slippery slope here but a non supportive environment makes it worse. Makes the symptoms worse. Don't waste your energy anymore explaining or fighting. I have been there and got sicker than you can imagine.

    look for your safe place. For what you need right now to feel better. Reproaches from anyone or unfounded advice will not make you feel better. There are always options. And if it means (temporarily or definitely) alienating yourself from friends, family or beloved ones physically (until they do jump or don't jump on the wagon you need to move forward) it must be so. The ones which are the right ones for you will come along with you!

    There is help out there for you and your needs. It may be in the form of understanding friends or therapists or family.

    Don't waste your energy suffering and complaining of what he is not or cannot give you now.

    Make a stand about what you need and go and get that! Yiu can do this!

    The worries and abandonment you are experiencing now are detrimental to your health situation.

    This is about you and your needs and not them.

    As for the sleeping I still have bad nights and some things help to get through them: absolutely no electronics in the bedroom. A book on the nightstand. No late meals. Accepting that you are awake and not worry about not sleeping and Yoga Nidra look that up on YouTube whenever I put that up I slip back into sleep for at least an hour. It is very calming.

    Best for you. I wish you improve and find care and dedicated support. it is very brave you spoke up.

  • I feel your pain!! My husband is the same. Complains that I'm always in bed and says how can I be tired with all the sleep I get! Fact is, I don't sleep much at all, I'm up and down all night and then knackered the next day. He doesn't lift a finger to help me and never has.

    I've been diagnosed for about ten years and have found it a real struggle accepting it as my mum died from PBC. My husband saw how my dad tried to care for her towards the end, he couldn't have been more supportive (my dad that is)

    I was also hit with inflammatory arthritis about a year ago, I couldn't walk very well, every joint in my body was in agony. He didn't once offer to even make me a cup of tea let alone do any of the house work and I still had to go to my job as I didn't get sick pay.

    I have been on zopiclone for about 7 years along with Mirtazipine for depression and anxiety. I also ended up with an eating disorder, I intended to starve myself to death!

    After much counselling and third part support and the excellent care from my GP, I pleased to tell you there is a light at the end of the tunnel.

    I'm now off the sleepers and mirtazipine, I take one Amitriptiline at night and I can honestly say they have worked a treat.

    So thank you for venting, it seems to have prompted others to come forward with their true feelings and experiences, a problem shared and all that.

    Get to the doctors and push for something that will give you quality sleep, try the Amitriptiline. Ask for some counselling or some CBT, it really helped me to deal with negative people including my husband. He will NEVER change, I know this, so I've had to for my own sake no that of my children.

    Life can be good if you take action and look after yourself, no one else will.

    Good luck and take care x

  • I feel for you my partner has always been the one to sit back and let me take charge of pretty much all the day to day running of our business etc I have always been the active one which is beginning to take its toll on me now I am getting more tired perhaps its time for both of us to become more selfish and just think of our self I honestly think partners are in denial because they cant handle the situation Take care of yourself and bugger him till this phase passes all the best xxx

  • Hello

    It sounds very hard for you. You dont need a partner who tells you all of that. Is there anyway you could rent say a holiday cottage for a week and go on your own and sleep, be yourself. Stress makes things so much worse . I have pbc cirrhosis but at present am not too bad but I Also have chronic back pain and sciatica and that worries me more and it frustrates me so much. With a partner it is hard..you can never pull your weight and they get frustrated because they cant do anything to help and stress starts.

    It is awful to be the sick one especially as we probably all have had busy lives once. But weve been dealt these cards so all we can do is life as best we can and for you..if I can say it, you need time away from your partner. It is YOUR life..

    Good luck

  • Hi bobbycat, After reading your message , I wondered if back and hip pain is anything to do with PBC, as I have started with it, it really gets to me,and they say we shouldnt take anti inflam tabs, so whats the answer, got so bad last week ,I bought some Co-codomol, and just felt soo strange , so havent taken anymore, wondering now whether to take some anti flams regardless, really would appreciate some advice on this, Pn the plus side ,I have a fantastic husband who looks after me well,,but I include him on the site , he reads the messages, so he has more than a basic understanding of this disease, I am retired aged 73 so can take myself off to bed and rest when needed, I am so lucky, Had PBC now for around 11 yrs, well thats when it was diagnosed, who klnows how long I had it really , retired when I was 65, but had felt tired and achy for some yrs before that, Thanks for listening, Mylo2, ( Jan Robertson)

  • I normally say on here that people will never understand what we go through and not try to change them. But honey you have cirrhosis. CIRRHOSIS. I don't want to be a jerk here, but what the flip is your husband thinking???? I admit that I work full time, spend most of my free time with my widowed Dad and trying to make sure my husband has healthy food to eat and I do all the house work I am only stage 2, but I also had thyroid cancer and serious gyno issues too. But my husband works close to 70 hours a week and he still does his own laundry, doesn't give me any problems with resting and helps take care of my Dad. I know not everyone is cut out to be a caregiver, but he you need support. Wasn't your eyes going yellow a clue you are sick???? Honestly. Sorry this really upset me. I just took a promotion at work that will be more stress, but I am doing stuff I want to while I can. I am trying to make as much money as I can, get out of debt and have enough money to pay for my house to be cleaned etc. You need support. I think one of the suggestions here was a good one. Go to a hotel and leave him alone for a while and see how he likes it. Get some rest honey!

  • Thank you all for the posts. It does help knowing I'm not the only one dealing with these things. Thank goodness for this page cause I was just about to go insane lol thank you all again.

  • My sister, who passed away this past May with pbc, also had a big nausea problem and sleeping issues. Think it must be related to the disease. She was eat, then in a half hour or so have to throw up. It's a miserable disease and has made be aware of the need for organ donors.

  • I am now getting some sleep problems though have had stage 4 PBC for many years. Diagnosed in 1994 when it was stage3/4 then. Ursofalk and a better attitude to life and better food etc has helped enormously. I know keeping my mind on the positive things of life, reducing stress, smelling roses literally all helps. The main problems now are the portal hypertension which caused aneurysms in the splenic artery. I have had several operations to block them up - now with medical grade super glue! I can certainly relate to the need for naps during the day to maintain even a relatively normal level of energy. Luckily I have a wonderful new partner who is really supportive. Yes we still live on a property that needs a lot of work all the time as well as been self employed. ( No one would employ me with my health risks now!)

    So back to your sleep problems - disregard your husband and cat nap whenever y

    ou feel tired. I may do this 2-3 times a day. It really helps. This morning I lay awake from 4-5am and then just got up. Went back at 9.15-10am to rest. Now I must go and do some work! :) take care and let me know if your physician has any suggestions for you.

  • I also am stage 4 and definitely cirrhosis not just PBC. Like you the fatigue is an element very difficult to come to terms with but I do have a husband who does understand, perhaps not all the time, but most times. I do have the nausea and I don't know what your diet is like but my nausea is certainly not helped if I go off the rails with what I eat - if I over do the sugar and fats then I know what is going to happen, if I eat healthily the nausea goes away. I have responded well to Urso and I probably persuade myself I am better than I am. I still work full time although come mid afternoon and I really would like a little lie down. I have made myself go swimming twice a week, I rarely ever feel like going and sometimes it is difficult to be motivated but I have stuck at it as I feel it makes me feel more like 'normal' people, stupid I know but if it works for me then that's OK. The issue with your husband I don't know what to say on that but perhaps it is his way of coping with PBC and he thinks that by keeping you on the go then he doesn't feel you are ill. In the end you must do what you feel is best for you but your partner/husband will be worried as well and quite helpless in that he can't help you.

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