'Are you still tired'???

[kingerm]

That's what my husband said to me this morning cos I yawned. I'm only up about an hour and a half. I'm mad that he said it. He says he was joking. Am I being over sensitive? 

[Sarah4314]

I know the feeling:). I think we all know that without having the fatigue it is difficult to understand. I can see where you would be sensitive because it is frustrating to wake up tired. But, it does sound like he meant no harm..let's face it..it is strange that we wake up tired. That is why support from each other on here is such a big help because we know we get it. It sounds like his heart was in right place and we do have to sometimes laugh...but maybe just telling him that yes, you are still tired and how frustrating may give him some insight. Before having a chronic illness, I know I had NO idea! It is hard for them too and a transition.

[Dese]

Hiya I get tired sometimes I don't even get out of bed than another day I can get on with daily things. He probably don't understand the simptoms or he could of just been joking. I noticed I get very touchy now and when tired I'm worse. I feel for you I found out last year I had PBC when I told people know one asked if I was ok just I didn't know you was a drinker 😡😡😡  tried telling them nothing to do with drink. So chin up I enjoy the good days and try to deal with the bad X

[Hidden]

Hello kingerm.

It is frustrating that having PBC can cause family members to not really understand.  I have some in my family that just do not get this.  When I say I can't sit still later in the day due to feeling prickly (I start itching late at night but start feeling prickly as the evening wears on) it's not really understood.  I find nowadays I cannot sit about for overly-long as I do feel prickly and uncomfortable.  I turned down a get-together in January due to knowing I'd not be able to sit in someone's home for hours on end due to now having this PBC and it wasn't anything really important and optional (turned out that day (weekend day) I wasn't home anyway).

I find I can't be bothered with much after the evening meal.  I have broken sleep most nights due to itching and I do feel tired later in the afternoon most days so I only choose to take part nowadays in what I choose to.

I never actually mention PBC to family members these days (my husband has taken it in more since diagnosis when the consultant explained it whilst he was there, I never informed my husband of certain things I had read about prior to being diagnosed).  Far easier to not bother I find.  This way I find not talking about it regardless of how I feel does seem to make life that much easier.  I know in my case I don't have fatigue now but I did during 2010.  If I didn't itch I'd not know I had PBC.

Out of interest yawning isn't actually a sign of being tired.  I once saw some science programme on tv and yawning is apparently due to us needing a bit more oxygen.  I find myself yawning later in the day and know if you do it several times anyone around you can then start to yawn!

[kingerm]

Thanks guys for all your replies. I was overreacting I think. But maybe it was all because I have also suffered from depression since I was 15. So I'm not sleeping at the moment and my concentration is very bad. So possibility I need to up my dose of Anti - d's! Such fun to have both these things!

[Sarah4314 in reply to kingerm]

Not overreacting...I feel that way all the time..perfectly normal! Having chronic illnesses is tough!

[Rockie]

Kingerm.  I know we get very sensitive, but it is because people without this horrible condition cannot understand what we go through. This is a very lonely road.  My sympathy.

[spoul]

I don't wake up tired because fortunately I sleep very well but my fatigue sets in after lunch and I go back to bed for a couple of hours.......helps me get thro rest of the day. Sometimes people think an early night will cure your fatigue but it's a chronic condition with chronic symptoms.......happy days ha 😃

[Angelsww]

Your not over sensitive, and he isn't being heartless, its just something people can never understand when they haven't suffered from it. Just tell him that fatigue is very different to  tiredness, fatigue is all consuming whereas if your tired you can just push through it.

Be kind to yourself, depression also depletes energy so you are getting a double hit. Do what you can when you can, if you need to nap, then do so, just try tog et a bit of exercise in each day... and I don't mean cycling round the country, even a gentle stroll helps.

[Nolagh]

My husband and 2 boys are the same, they never think anything is wrong with me, It's very frustrating and depressing! I've taken an antidepressant on and off over the last 4 years and it helps. Just hang in there and take care of yourself. No one will understand because you look good on the outside! Good luck!

[jiacheetah in reply to Nolagh]

All,

It is hard for others to understand. I got asked if it felt like being tired always feels or is it different. Tired is tired. Sometimes I wake up tired and move from the bed to the couch. I feel weak and just want to sit and do nothing. I never know when it will happen.

I try to go to the gym s times a week and make it most of the time. Some weeks are good some not. I got diagnosed at Stage 2 - no symptoms but numbers were bad for 3 years before  i put my foot down and told the dr. I need to see someone - it all sucks but you make the best of what you have and I am hoping I can stay at this stage for awhile. I still get sad and angry and wish I would have known sooner but I cannot turn back the clock and I am looking forward to my youngest son getting married this year. I want to be around for my grandchildren!

[Lekkerbek]

I am 57, stage 2, before I knew I had this sickness, I adopted my granddaughter, she is now 11. I am manager at a very busy warehouse and my household is very busy.  Last night I felt like walking into the ocean without looking back or stopping, just to feel the quiet around me. I am so tired, alway, miss you husband does his best, but I have realized that this sickness is mine and mine alone, don't expect the rest of the family to understand it anymore, it is very very lonely in our world!

[Chrisprio]

Hi Kingerm,

I found this BMJ article really helped my family and friends get a sense of what PBC and tiredness can be like. 

bmj.com/content/345/bmj.e7004

[Chrisprio]

Mmmm, the link doesn't seem to have transferred properly. I know it's been used in previous posts so maybe someone will be able to add it better than I could.