Have had a really bad week beginning with a confusing consult with a new gastro specialist. Already asked for advice from you guys on that one and you were great.
Now it seems that husband is losing patience with me. He had to tidy middle sons room today and it was a mess.
Fatigue is so bad for me, sometimes it is all I can do to take the little one to school and walk the dogs. Then I have to "go to settee".
Husb hit the roof about me being lazy etc. but honestly the thought of even hoovering the front room, never mind mucking out a twelve year olds bedroom just fills me with dread. I then sat down and told myself I have to try harder, but then dread tomorrow.
Any ideas on beating fatigue out there? I have read the PBC info but am doing everything suggested anyway. Healthy diet, walk at least half an hour a day.
Also has anyone had the same problem with a partner?
I am a moaner at the moment which is really unusual for me. So sorry xx
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SamT
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I think its hard enough for us to understand ourselves how the fatigue comes over and effects us so friends and family dont stand much chance. Wish I had a magic wand to wave and make it all better but think its just something we will have to put up and cope with. I dont have a partner but get the same sort of remarks from my teens. Hopefully they will never know what it feels like.
I think you do great if you walk for half an hour a day. I wish I could.
Thanks for this zipitydoo. Think it made me feel better just venting. A good nights sleep and back to the GPs tomorrow methinks! Know what you mean about teens too lol!
Sam x
I wish I didn't relate to what you're saying. I too have teenagers under my roof (whio don't get on, and wouldn't dream of co operating with each other..) I have always been very independant and self reliant. When I was 40 I felt like Superwoman, by the age of 45 the fatigue had cut in and I felt like a slave. I didn't have energy for all the things I did and was scared. I work for my husband's business and the work is physically demanding! I was sleeping on the floor rather than coming home in order to get through the day. My hubby has AS so he doesn't "do" support or sympathy. Indeed he reacts to my illness with cruelty. Find your most sympathetic friends, give them your time and it will reap dividends. Vent here any time, we all know where you're coming from!! I also think you are doing brilliantly - I follow any/all advice. Tell yourself "This too will pass" in a bad phase. If you get sunshine... get out in it. My eldest is 22 and the grotty teenage phase does end and you get a well rounded young person at the end, as if by magic (but actually down to your stunning parenting, of course!) Sunny here today, Luck, love and sunshine to everyone.
Thanks so much for this Kym. It's so good to know that others have experienced this feeling. Am off to the GP's now for advice and hopefully a bit of understanding. It's rainy and dull here in the North East but hopefully sunshine will find it's way both inside and outside my house. x
What sympathetic friends would they be then as all my friends did a runner when they discovered I could not do anything for them anymore and were so afraid they may got asked to do something to help me for a change, the only friend I have is my sweet husband that I treat like dirt as I have no one else to take anything out on when things get on top of me like they are doing at the moment.
Hello SamT.
Forgive me all who replied if I mention something already mentioned but I hope to add a point that maybe hasn't.
In 2010 before diagnose I was working full-time and started coming home from work and just sitting down and falling asleep, not quite fit for anything. I was constantly tired and even slept for almost a full weekend. Unlike yourself I've not young children tho' might as well have as my now 23yr old son is such a slob round the house. He just leaves anything lying around he has used and then thinks some fairy coms in with a wand and replaces it for him.
I can't fault my husband tho' it has been very difficult but I think part of his understanding was attending the doctor and hospital appts with me. I think when you hear an hospital doctor in particular inform you of certain symptons it seems to write home a lot quicker. Tho' I mentioned to mine I may have PBC and a bit about it before I got the diagnose, it still came as a shock to then be told by a doctor there is no cure and that some patients end up on liver transplant lists.
With a slight life change that we made (my husband decided after a long awaited for holiday as I went back to part-time working in same job (had covered for a full-time sick manager, retail so unpredictable working days/hrs) I should quit my job as we could get by on his wages and I also have a small private income), slowly over the mths I started to feel less and less fatigued. I think the ongoing urso tho' it's not exactly deemed to controlling tiredness I think with liver improvement it does contribute.
In all honesty I have to say that in the last 6mths I've not felt like having a nap during the day and Mon-Fri I rise at 6a.m. and it is around 11p.m. when I retire. I do feel almost normal again but it has taken 16mths to get to here from diagnose Dec 2010. Maybe more time for yourself (I can't recall when you were diagnose, my apologies) you can slowly see some improvements. I know at the end of the day only PBC patients (and others with conditions that cause fatigue) can really understand (just as I feel regards a doctor only having to experience the itch once to get the full drift!).
Hang in there and like I did start to try to count the good days as there as some of them I found.
SamT, Most people on this site can relate to the problems you're having. We're here to support one another, we all need kind words and encouragement from time to time and this site is the place to get it. One thing that helps me is to take my hubby to the doctors appointments. When he hears it from the (male) doctor, he takes it seriously and he also asks good questions. I feel it's two against one in the doctors office and having another "guy" there makes a difference. I get more time and respect. If your husband/partner can't go, try to take another adult. Two sets of ears really helps.
To those of you with difficult teens. When they grow up and become adults you will no longer want to strangle them. They can be a joy and bring much happiness, hang in there and you'll see. To those of you with difficult husbands, remember this. You cannot replace any of your relatives but you sure can replace a husband. I know because I did it and now I have a keeper!
In a way, I'm kidding as I know that children need their dads and most husbands are great! Keep your chin up and as Kim-Y says, "This too will pass."
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Best way to get your own back on your children is to wait until they have their own children and then moan about them to you!!! My daughter is fantastic, always has been no trouble (neither has my son, he is just a slob!) but she often says now she has her own 2yr old that she understands far more now she is a mother herself and then things we have to do.
I feel that the way to cope is to sometimes take time out for yourself. Also taking your husband with you to see the doctor/specialist is a great idea and one that I have done since first diagnosed last year.
With regards to your kids & husband, maybe if you sit them down and explain how you are feeling and that you need help around the house, as you are no longer superwoman. If you are open and honest with them about your condition and how it affects you I am sure they will want to help. I think as women we find it really hard to ask for help (and hand over control) as we would rather just do it ourself but sometimes we just have to ask! Good luck and take care. x
My fatigue seems to come and go. Right now I am on an upswing, but for a couple months just worked and came home and mostly not full days. But right now I work (I'm in health care, so I deal with elderly patients all day and have to be up for them) and I still seem to have some energy. I do go to bed by nine and get up and 5:30am. My husband is pretty good (he is also in health care) although there are times when he tells me to try and push through and I just can't. When I hit my wall that is all there is. I'm the one who gets mad at myself because there is so much I want to be able to do again, like really enjoy my grandchildren. They are the ones who don't understand, especially my 9 year old granddaughter who is used to grandma being more fun. I've been on urso for 2 years and if i only take one dose of it daily my stomach feels okay, but if i take the second dose it makes me feel yucky. Kind of a catch 22. The itching seems to be there in the background most of the time, but when the inside of my mouth and throat and lips and ears itch I just want to jump out of my skin. Our wedding anniversary is coming up in a couple weeks and we are going to New Orleans. I am hoping and praying that I will still be feeling energetic then, in fact I am willing myself to do so. Thanks for being out there friends. It really does help to know we're not in this alone.
Because the fatigue comes and goes it may see to others that we are not being honest with them. I question myself sometimes. Can I push a little more to do things?
Other other problem I have is a husband who will NOT rest when he should. He is a mailman and worked his whole route plus overtime while having an appendicitis. Second day home from surgery had my brother drive him to flea market to look around. No way he is ever going to understand me or my illness.
I stoped trying to explain it to him. Over the years (together 38 years) he has gotten a slight bit better. Slowly he is getting accustomed to what I can and can not do. I think my husband anger is really just him being afraid.
Please don't think yourself a fraud. You are someone who has an illness that is unpredicatible. Do what you can when you can. Rest when you need to.
Sometime I NEED to sleep just so I don't have to think about PBC.
Come here when ever you need hugs of understanding.
Definitely take the husband with you to your appointments. State your symptoms to your physician and ask him is this expected and what suggestions does he/she have to help you and your family cope with the symptoms. One of the best things you can do for yourself is to eliminate as much stress from your life as possible. One way that I found that made a lot of difference in my life is : I finally accepted that I could no longer do as I had before. I do alot of talking to myself when I begin to feel guilty over a situation and I remind myself that I have a disease that presents itself different almost every day and that in order to not stress myself out over it, I have to accept it. I found that since I no longer allow others to make me feel guilty that my stress is well controlled. I am fighting for my life and no one can do that for me, but me. My schedule was go to work, get off work, go to bed. On weekends, get off work on Friday and go to bed and pretty much stay there until Monday morning. In order to work fulltime, this is how I had to set my schedule. Just recently, I decided that I can no longer work fulltime. Now I do what my body says we can do and if I need to nap, I nap. My husband is still working through the anger of this disease but he has voiced to me, how helpless he feels that he can't fix it for me. We both have had to change our thinking on several things such as household chores, yard work etc...What is really important and what can wait or maybe you don't need to do that particular chore anymore. Simplify your life as much as possible. Love yourself and take care of you.
hi there sounds like you pretty fed up, i know how bad the fatigue is...i had to give up work as a result, but don't think work understood as i always looked well and put a smile on my face even when i was feeling dire
take care of yourself and let your family make adjustments for you...like hepling more, in the longrun its worth it cause my fatigue got worse. Wish i could practice what i preach as easy, haha
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