Fatigue

[Michelle2015]

Fatigue

How does everyone manage to work full time and run a house.

I'm really struggling

[Jojowen]

Hi Michelle, I wish I could tell you how to manage, but all I can say is that

I don't manage at all. I am really really trying but I am doing badly at work and not well at home. I live on hope. My dr looks at my bloods and they are better, but a year ago I thought the extreme fatigue, joint pain and anxiety were temporary, now when I wake up in the morning I realise I might be feeling this way for...how long? Nobody knows. It does seem, however, that people who have had PBC a long time cope somehow. Some seem to be able to pace themselves and make the most of the energy they have, others reduce their work hours and get more rest. I was disgnosed about a year ago and I have tried to live as if there is nothing wrong with me (concious denial :)). It is not really working so I am talking a lot to myself about trying to answer the question; how does PBC affect me and what do I need to do to be as healthy as I can?

I just feel a bit alone in my quest for how to live with this. I have never met anyone else with PBC, there are no support groups in Sweden, where I am from, and my gastro and GP view PBC as a purely physical thing. Bloods improved, I should feel better...but I don't because I am struggling. Not their problem they signal, not their problem. So, we'll keep struggling until we find a way.

I really do understand that you find it hard, I do too!

Hope you find a way to feel better soon!

J

[Michelle2015 in reply to Jojowen]

I am the same, making silly mistakes. My bosses don't really understand. Your right because I don't look ill, I get told I should look after myself and sort myself out. Also I have been told to sort my medication out. People just don't get it

[TracyLou in reply to Michelle2015]

That is so sad to hear Michelle, it frightens me to tell people I am ill, they think if I am that ill I can't look after my children. Where is the support for people with PBC? We did not ask for this illness.

[NotorDJP]

I wish I had a magic answer, but the other folks are right. There is really no way to say what will work for you, because this disease is so variable. I am dealing with a well meaning boss, but one that is in so much denial at this point. She takes the fact that I have a hard driving work ethic and I look fine to mean I am fine. She told me Friday that she "is just going to be positive and hope for the best." She said she would cross that bridge when we get to it, etc. Well I'm going to my gastro tomorrow to get FMLA paperwork filled out (thats a US thing) so that they have it on file at my workplace in case I do need leave. Right now I am blessed with quite a few vacation and personal days, as well as bank holidays, that I am getting by. But I just caught some sort of bug and I'm coughing, head congested, so it makes you feel much worse than you would. I think I am doing well, but when I run across things that I was doing and see they have been untouched for weeks, or my aged Aunt who I look after calls and says she hasn't heard from me in weeks, or my house gets even more dirty, I just can't say I'm doing ok.

Its ironic you just posted this because I was going to post something about, just how do you know if you aren't doing as well as you think? I can't quit my job right now, I owe too much money. Economy is bad enough that I can't just go freelance and make money (that takes more energy than working for someone to be honest). I love to write and want to start doing that more, but I just don't have the energy or brain power to do anything anymore. It may be the virus talking right now, but I truly wish I could just quit my job, file bankruptcy and stay at home. Get back with me in a week or so I will probably have changed my mind.

I'm in the mode right now of trying to simplify my life. I am considering giving up my volunteer stuff at church and just trying to keep my head above water at work.

Sorry this is so long, but you will find you get the biggest responses from the fatigue posts, as they are a hot button with all of us. Here are some suggestions that I have after suffering with this for a few years (just diagnosed, but doc says I've had for years)

1. Prioritize- If you really love doing something, try to figure out ways to do it differently than you did before. Put first things first. Take care of yourself. You can't take care of others if you don't take care of yourself. Get rid of things that are energy stealers that give you nothing in return. (Your kids count! haha!)

2. Be realistic-- Your life had changed. You have to make choices now. You can't work a whole day, go to the grocery, fix dinner, clean your house, have relations with your husband and still spend a couple of hours before bed reading a good book. Its ....not....happening. Do your grocery shopping on a day you don't work. See if someone can do it for you. If you have the means, hire a personal shopper. Clean a room a day, or even part of a room a day. If you can't clean the whole house (I can't) just clean the areas you use the most, the other will be there later.

3. People don't get it---Don't try explaining or even talking about it. They don't really want to hear it. They think you are ok. If you can get your husband or closest family members to understand, thats all you need. Your friends probably won't get it. Thats why you come here

4. Be your own advocate--Most doctors don't understand this disease. Keep educated, know your body and your health. Keep track of your numbers. You aren't the only person they will see.

I could think of more, but I have to get back to work. HOpe that helps

[RANGERSTRACEY03]

Hi I am Tracey and just got diagnosed yesterday, I have had the symptoms for over 2 years now and no one would believe how tired I was or how swollen my elbows and knees were, I am now struggling with my hands and fingers becoming swollen. I too had a take some time off on the sick and because it was down as tiredness syndrome I was requested to come back into work, I have now told them what I have and am waiting for some kind of reaction or review.......I am hardly sleeping and am now looking at prioritising what I do and what doesn't tire me out the easiest. Has anyone got any good tips of what to eat - I have a nut allergy and put on weight when I eat fruit and don't do shell fish.

thanks for taking the time to read this

[Curlymac]

I had to come home early from work last night due to fatigue. I also am suffering a lot from skin rashes . Mine look like insect bites, often in a straight line and they have swollen red patches that surround them. The pimple like things ce to s head and erupt leaving a clear liquid. They itch terribly. I had them on my neck and shoulders and then my upper arms and now on both calves. My legs feel really heavy. I get fatigued whenever these flair up. My doctor wants me to take antihistamines for 2 weeks and has done a biopsy of one of the blisters. No result yet. I also get anemic from time to time and have had to have liquid iron replacement via IV every 2 days for 2 weeks last year. My albumin count us only 205. Was 669 3 years ago so the Ursodiol is working. I'm in Canada in British Columbia so my numbersay not be in the same unit of measurement as those in the YK. Anyone dealing with these blister type rashes.

[skippydownunder]

Yes. I had this on my back and buttocks. Was told by the gastro to see a skin specialist as it was not his speciality. I decided to jump in the salt water instead and that has cleared it up quite a bit even though not completely. But much improved! Jumping in the ocean is probably a bit more difficult in British Columbia than in Sydney but maybe warm salty water could help. It will sting a bit but then you know it's working. I sometimes get an odd blister on my thighs or stomach as well and the liquid is clear. If the itch is bad I put a small amount of steroid cream on to stop me scratching and cut my nails. Yeah, the lengths we have to go to!

As for the fatigue.....I think I have probably been tired for so long now that it's just normal. I work full time as well and as a teacher have to bring work home. So I just get as much done as I can. Work is endless anyway.

[Alley27]

I don't work because the fatigue prevents me from doing this also I fully understand about difficulty running the house...I have a husband, who does nothing around the house to help me; he does work though, and I have two adult sons at home whose idea of helping is leaving everything about and not cleaning anything except their own room space...I admit I am struggling. I have AIH/PBC overlap and since diagnosis in 2012, I have had to face up to the fact I can't do what I used to be able to do; my life has had to drastically change...and today I discovered that the stairs in my home are getting a bit too much for me. I am 50 years old....this thing is insidious but we have to keep soldiering on the best we can...I do know now that when my body says stop, I have to stop regardless of what I am doing...and sleep is the only thing that helps xx