I know I have heard many people lament about this on here, but I guess I have had this disease long enough now that its getting me down. I'm tired of having to constantly explain to people why I am so tired, that I can't just be more "active" and it get better, why if I just rest a bit it will be better. I'm tired of explaining and getting the looks that I'm exaggerating or that I'm just plain making it up so I don't have to work as hard as everyone else. It isn't just the physical pain, or the fatigue where I can't do anything after I work, its the stress that I am under and find that I can't organize my own thoughts.
I have a full time stressful job, an aging father and aunt, and about 4 volunteer jobs at my church.
I know people get tired of hearing I just can't do this or that. They look at me and see a fairly healthy looking person. They have gotten used to the now paler color of my skin, my thinning hair and the sagging of my eyes. They don't recall that I used to look different. As I faced another test for another ailment this week and face the possibility of surgery for this, I actually though surgery might be preferrable so I would at least have an excuse to lay around for a few weeks. I'm really discouraged right now.
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NotorDJP
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Your health and your conviction to do whatever necessary for your health is a force that is stronger (and much more important) than what anybody thinks, whether or not they believe or think they understand what you are going through. Don't waste any extra energy trying to get people to understand: just state the facts and get on doing what you need to do. Anybody who matters will see your resolve. Hang in there.
I totally understand, if you look relatively well people seem to think you are shamming. Even my own siblings have ignored my diagnosis. On the good days I get on, on the not so good days I have my cross stitching as a good excuse for sitting quiet but still appearing busy. Fortunately I am now retired so do not have to go out to work, and sadly my aging mum who I looked after 24/7 for the last three years of her life with little or no help from siblings has now passed on.
People have their own agenda and often lack the ability to comprehend a disorder such as ours, but you are themost important person in your life and you need to take care of you first if you have enough energy left over then you can get enjoyment from helping others.
I hope your surgery goes well and that you can have some trouble free convalescence. Hopefully someonefrom your church will be supportive during this time.
Keep your chin up. The only people who understand PBC are fellow sufferers. I completely understand your frustration. I think the vast majority of us have experienced what your describing. I know I certainly have. I also had a very stressful job which required me to be on the road dealing with other peoples stressful situations. My manager decided that because I wasn't constantly complaining, and I was doing my job, there was nothing wrong with me. Even when I was clearly dead on my feet. In the end I was signed off and took early retirement. There's no easy answer for you. For your own sanity you need to ignore what everyone says or thinks and do what's best for you. As others have said your welfare is the most important thing. Don't let the beggars get you down x
Chin up, I'm with you on this one. Fortunately I gave a very good husband who just gets on with things while I rest, and understands/accepts that I'm not being lazy. My son just thinks it's normal that all mums have an afternoon nap or fall asleep on the couch before tea. But some friends I have have been less accommodating. I've just come yo the conclusion now that I can't keep explaining over and over. I don't need to give excuses why. It's not just the physical things that tire you its emotional stresses too, but that bit to a certain extent is up to you if you let it bother you or not. It's taking me almost 9 years of extreme fatigue of get to this point. From time to time it still winds me up. Yesterday I was asked if I was not just a bit lazy....now that hurt...walk a mile in anyone's shoes before you judge them. i hope you get some support at church. I also do voluntary work there and am struggling to find people to take bits off me. But that's what I need to do..you have to make your own decisions. surround yourself with people that don't drain you. Do what you can do, when you can do it. Think postivley, and listen to your body.. Not the ignorant people who gave no idea what your going through. Those who care about you will still be there for you.
Napping is good for you, even if you do not have PBC. I take a nap at work sometime after lunch, about 10 minutes, and 20 mins on the public transport home. Much better than the 3rd cup of coffee! It makes you nicer and more alert. I need it more now after PBC, but I used to do it before, started when the kids were small. In some countries, it is even recommended: theguardian.com/world/2014/...
Thank you folks. I truly appreciate your responses. I'm especially tired today due to maybe catching a sinus bug. Its when I get a normal illness that most people get that makes life even more unbearable for me that I sort of "snap" and feel sorry for myself. I try not to act sick around my father, who went through my mother being like this for years, so when I finally just can't fake it anymore, he acts like its a new thing. He is almost 80, so I cut him some slack. But its still difficult. The people I have the worst time with are my employees and co workers. They act as if they understand, but I know they really don't. When I have to take more time off than them, I get the "well I do it why can't you look". That's probably the worst. I have an understanding boss and my husband is supportive, but I just get tired of it. I know I can only do what I can do and have to let go of what people think. But I am pleaser by nature, so its hard. Thanks for the support. Sometimes I only feel at home with you guys now.
Unless you have PBC people just don't get it so don't waste any more energy explaining it to people. You are doing brilliantly holding down all those jobs. Who cares what people think, just look after yourself as nobody else will. Good luck if you have surgery.
Yes, I have stopped telling people what is going on. They just don't understand. I have become ruthless and selft-centered and just tell co workers I won't be there when I have an appointment. Funny - it has helped to stop explaining. Now I know they don't get it and I try to hold up my end, when I can't I just don't and tell them I can't without an explanation. So now when I get grief because something hasn't been done or not done properly I just say sorry but I couldn't. That is how it is, I get to live with it and so do they. I do my best and I expect the same from them. What else can we do? I understand how you feel completely. When what little strength you have is attacked by an infection everything is worse. Put yourself first and when energy levels are higher for a while you can use the energy for the benefit of others again. There is a sorrow in not being able to be the person you were before an there is absolutely no understanding about this amongst the doctors I have had dealings with. My life has become much smaller by necessity...but I can still enjoy it!
Hi NotorDJP I really do understand how you feel about yourself that's because I have now got thinning hair I use to have lovely thick hair and a long fringe which as almost all gone I have yellow fatty deposits around my eyes which are now sagging and puffy and for the skin on my face its full of lines have lost all confidence in myself and that alone to cope with is bad enough I hate to be close to people i know they are looking at me and with all the other things that come with PBC i have changed in to a person i don't know anymore i have got a lovely Husband who says he understands were i am coming from and without him i would be lost in a world that nobody can see what i am going through life goes on and at the moment just feel that i am just existing Take Care x
I fully understand where you are coming from with this. My own family actually said I was putting it on so now I push myself to my limit because of what they said and it makes me even more tired. I also have autoimmune hepatitis so double whammy on the fatigue. I also am due to have another test for something else which I am not looking forward to and if am unlucky that also could lead to surgery.
I am so tired of explaining to everyone that I can't do the things I used to be able to do. I have had to completely reorder my life style and I can't work which adds to the stress, nor am I claiming ESA or PIp because there are so many people who are still waiting to hear and getting turned down. My husband works and refuses to talk to me about what is going on with me its as if things are still normal even though they arent... so yes I understand fully the frustration even some of my friends no longer want to hang with me because I can't always keep up.
I just take each day as it comes and do the best I can and any more is a bonus, this is my philosophy now, I am also looking at ways I can earn money in my own time on my good days so have just qualified as a reiki master and will be doing reflexology in the near future. Its a matter of pacing ourselves, I always know what I may be able to do on any given day depending on how I feel when I wake on a morning; and if I need to stay in bed, then thats what I do. Keep your chin up xx
I kind of do that too. But not for that reason. I do it because I figure one day I will not be able to do it. That may be wrong and may make me sicker quicker so I dont know if I am doing right.
So sorry. Its not bad enough that we were basically given a terminal illness diagnosis (even if it is slow moving), but we have to deal with everyone's crap too. Yes, I'm still in a mood!
Hi, I totally understand , I'm a mother of 2 , work full time at the hospital, and have my mother in law with dementia living with us, my partner works away mon to fri, and to honest I don't know how I keep going, I even get fed up hearing myself say how tired I am, I have to take annual Leave to catch up on cleaning and laundry, but some people just say, you be ok , your just tired, some days I just want to scream, when will this condition be recognized for the debilitating disease that it is
I drug into twork today and my employee (who was trying to be kind) when I told her that was flat on my back all weekend said rather innocently. "Glad you were able to recharge" GAH
I didn't recharge! I can't recharge! Though I do feel somewhat better, I had to do NOTHING all weekend, not get dressed and almost sleep round the clock to be able to come back to work today. I emailed our pastor this morning and bailed on a meeting this week. I have to work this coming Saturday and am looking at 6 days of work this week. At least I can leave early some days this week, but I still have to get up early 7 days (counting Sunday) and not be able to get going at my own speed. Some days it just isn't the activity I am doing, its trying to put on the brave face and actually THINK. I dont' have a physically demanding job by any stretch. But its mentally taxing, as is most of what I do. I mentioned that I have an aging father and aunt. Well my poor aunt barely hears from me now and if my Dad couldn't drive, I probably wouldn't see him much either. They both live almost an hour away. Even when I get days off, I'm usually working doing something else. I know most people live this way, but most people don't have PBC, or Lupus, or something else autoimmune. I knew I was going to put the brakes on when I felt my neck tremor coming back this morning. I have slight tremors in my neck that I feel, but aren't that visible and I always thought were my heart pounding. They might be, but I think its just muscle weakness and tenseness. When that happened, I said, enough! Thanks for your support folks. I normally am not one to complain and whine, but I guess I just have had enough.
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