Does anyone else get really cheesed off when they... - LUPUS UK
Does anyone else get really cheesed off when they say" I'm tired" and your partner of 15 plus years says "why" ?????
My partner's favourite comment is that everyone gets tired and I shouldn't think just because I have lupus I am any different "he works 10 hours a day and he gets tired". very frustrating as people don't understand it isn't just tired it is totally wiped out. So yes I get extremely cheesed off too.
Yes, and I bet when he says he's tired you don't say "why" because you understand that he's just worked a 10 hour day. Unless you have Lupus you can't comprehend what tired is, because it's just different isn't it? I don't want any sympathy, when you have Lupus you learn over time to "get on with it" otherwise it beats you, but neither do I want to have to give an explanation every time I feel exhausted! As you say, frustrating.
hello i get tired a lot.
It sure is different when you have lupus. It feels like no amount of sleep or rest would even make a difference. I would certainly never dream of sayin "why" to him. Know what you mean I hate sympathy because it isn't going to make things any better. I guess what we are saying is a bit of understanding or noticing wouldn't go amiss?
My son (age 17) and I were only having the same conversation this morning. He is waiting for a diagnosis at the moment. He put it quite simply saying there are two kind of tired s. He sleeps for up to 16 hours and is still tired/fatigue. He has seen me exactly the same. However when I mention this to family, do they get it.....no! I think it is because we don't bounce back like a normal tired-rest-ready to go again situation. I too wish people would understand. At least we all do!
ive slept till 3pm today, if i tol anybody that they would think lazy cow!!
You know what... you just have to say "who cares what you think, it's what I need to do" Wonder how they would feel sleeping an extra half a day and still feeling no better!! Lupus is tough and if you don't suffer from it you have no concept of that. If you want to sleep til 3pm you go for it. 
i am always tired and yes its the lupus my hubby never complains he will leave me inn bed ,and he will get up and do all cleaning up for me and if he at work and asnt heard from me by dinner he will come home from work wat is 20 min drive to see if am ok and make me a drink i have the best hubby ever
thanks peppa xxx
Mine doesn't say why and often tells me to "take it easy" but then doesn't actually do anything that needs doing. And while some of the housework can go hang, getting our daughter to school and some housework can't not be done. Even when he was unemployed for 12 months I got up, got her ready, took her to school, went to work, got her from school, supervise homework, cook dinner, etc while he sat on his computer "job hunting" or "studying" and then he'd tell me he was tired. He's back working now so still all falls to me but at least I know it's me now and he's not around to help which somehow makes it easier.
Men are very good at telling you to take it easy and then not making it possible. Just think what a strong woman you are and be proud of yourself and the fact that your daughter will grow up strong too, following your example. Don't forget to occasionally remind him how much you do!!! x
I have had Lupus for 20 + years and he still says it.
Ah, the wonder that is the male of the species!! 
Oh so true. The term "man flu" was coined for a good reason. Don't you just lv them
what else can you do with them!!!!!
I find that my Support Group takes the edge of this type of thing as everyone knows exactly how you feel. A cup of coffee amongst the Lupus Species calms the nerves and allows you to let off steam. I'm sure that it keeps my hubbie alive.... as my urge to kill him melts away (ah ah). Lv him to bits but if he says "didn't you sleep well last night one more time Urggg...:. Perhaps I should hold the meets every fortnight instead of every month.
Ha ha! Of course a sense of humour works wonders and gets you through the toughest of days, and helps you say " no darling I didn't" !!!!!!!! You just made me laugh out loud so thanks for that....... Peppa x
"Lupus made me do it."
"I am not tired I have lupus."
"Blame the lupus not me."
"Active Flare Up Beware"
"quality sleep / active lupus = oxymoron"
"Why? Lupus is the why."
The best of the best : "Lupus Survivor"
I forgot to add ... useful at all doctor's appointments ...
"I AM NOT A HUMAN PIN CUSHION."
I get very tired and as with some of you my husband tells me to rest all the time, then he rests too!
Dishes, washing and my daughter all remain un-seen to as I get my much needed rest, but as I rest all I can think of is what is not getting done.
I have taken the big step to reduce my hours in work and take a wednesday off. I take my daughter to school then sleep until she needs picking up again!
I need it!!
Yup. Know what you mean. I usualy want to say back 'tired of explaining the same thing for 14 years' but i know if i do i wont manage to get the cup of tea i can't make myself jus now.
Hi
Hubby is understanding and helpful (be he was born without any legs from the knee down, he wears artifical legs is very mobile and works full time) as he is able. My Lupus effects him in that when I have a flare I always felt that he was angry with me, when I finally had the difficult conversation with him (difficult with blokes) and got to the bottom of it, turns out he was scared of losing me and felt powerless to help me. I explained that I thought he was angry at me and felt I was useless. Since we both realsied what was going on it is a lot easier to get through the bad patches. Some phrases I have used in the past to convey the way Lupus feels to friends and family
"I can sleep for 10 hours but when I wake up I do not feel rested"
"Imagine how it feels waking up every morning feeling you have ran a marathon the day before"
"I feel like I have been run over by a bus"- probably my most used one
"Bit like having permanent flu"
" I am actually 22" (I am 45)
Davina
PS
my GP summed it up very well many years ago (when I was first diagnosed) when I was complaining to him about the tiredness, he siad something like " It is too be expected as your body's immune system is working at warp speed 24/7, it is no wonder you feel tired" I love my GP!!!
deadasadodo, you really touched me with your story. You sound like a lovely couple who obviously care for each other. Communication is key isn't? I expect we are all guilty of assuming. Good to hear from you, stay well xxx
ps warp speed eh? I like the idea of being a genuine trekkie!!!! lol
yes same here hubby goes to sleep on the sofa but if I close my eyes he says wake up !!!
All I can say is "men" !!! Although a couple of the ladies above seem to have the exception to the rule you and I sadly seem to have been jumped in the queue lol (much as I love my hubby) Next time he tells you to wake up ask him "why" x
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