Pbc/Aih

[janine541]

How to make family more aware. Not sure if anyone else has family that are unaware of how tired we get with this illness we have.

I carry on running around after everybody. By this. My son has left home and im still taking him to work 4 days a week.

I work full time and because i have always run round after my 2 sons and hubby. They think im ok.

On my days off i feel like dying but drag myself to clean and go out for day trips.

Im gonna be a nanna soon and carnt wait but dread the thought of having another person to run round for

I love my family loads and dont want to upset anyone

[jane1964]

Hello Janine what helped both me and my family understand was this article.When I first read it I cried because it so summed up how I felt.

bmj.com/content/345/bmj.e7004

Reading this helped my family understand and helped me be more open to tell them how I felt and what help I needed.

I also find asking for specific help directly with reasons seems to work better than asking generally for help and once you've delegated a regular job let them do it all the time don't take it back when your having a better day.Finally if you can afford help like a cleaner get one.I bought a dishwasher and a tumble dryer to make life easier.You should spend your limited energy on things you enjoy.I found everyone's quality of life Improved when we did these things as I was better able to enjoy for example a trip out.Hope this helps.Jane

[janine541 in reply to jane1964]

Thankyou. I do have a dishwasher. And i pay my son to do a bit of cleaning

[janine541 in reply to janine541]

Hi jane 1964

I have read the article and find it really good im hoping that when my family have read this they will understand. Thankyou so much x

[Pinkcrush in reply to jane1964]

Thanks for sharing this, there the words I can't say to my family but I will get them to read it

[Hidden]

you need to cut back... give them all a few jobs... the fatigue is awful isn't it...

you have to start putting yourself first.

my best tip is compare it to when you are first getting over the flu or a nasty virus... and even standing up is a huge effort... i think it helps to give something as a reference that most people have experienced...

no one gets it when you say you are tired!!!... because its on a completely different scale.. as you know.

only people with the same problem can get it!!!!

tell your family you just can't do it all anymore.

get them to read the replies on here... that might help... good luck cazer

[janine541 in reply to Hidden]

Thankyou. I have .. good luck to you too