At 3%

Some wonder what's the difference between being tired and being fatigue. When you're tired you rest or take a nap. Most of the time you feel revived and you're good again. With fatigue it doesn't matter how much sleep or rest you get. You could have 3 hrs or 8 hrs of sleep. Makes no difference. You still feel fatigue. It's like my broken iPhone charger. 6 hrs of charging my phone and it's still at 30%. Lucky for me I can buy a new charger for my phone. Wish it was that easy for me and my fatigue. Fatigue makes you feel as if you are at 30% and what you do next may put you at 10% but you keep going praying to make it through the day bc you have no other choice. Living with Lupus and Sjogren's have taught me to fully enjoy the small things in life like lunch with my daughter or watching minions with my son. I've learned to plan less and live more spontaneous...bc lupus and Sjogren's is an unpredictable illness. One minute I'm at 80% and the next minute I'm at power saver mode 20%.

#lupus #fatigue

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  • Hi Ratana21,

    You have described how I feel amazingly well!

    It's hard to believe there are others out there who understand just how I feel! I always consider myself a whimp and get on with everything, because nobody I know can identify with these symptoms unless they have it themselves. Especially when I look OK! (Other than of course this wretched disease has eaten away most of my hair. Thank goodness for wigs!)

    It can take me all day to wake up, by which time I need to go to back to bed again!! Then I can't sleep! LOL........What a crazy disease!

    Hope you have a good day today.


  • Thats exactly how I feel and probably everyone with this illness the idiots doing the work capacity Assessments haven't got a clue what it's like , I feel just generally unwell all the time , faint , sickly etc my consultants called it malaise x

  • Hi I feel like that all the time. I've got Cmt and think I have lupus. I'd love to wake up feeling energetic and bounce out of bed. I just feel worn out all the time. I have an under active thyroid as well as arthritis. I'm snookered all ways round. I take asprin because it's the only thing that seems to work these days.

  • On yes I know how this feels too! I've just got ready to go to Drs for my 2weekly blood tests major effort! As u all know just a simple task! Got as far as the waiting room sat down and just cried! Like an idiot! What is wrong with me!

    However do feel a little better since crying maybe I just needed that! This fatigue is doing my head in now! X

  • This is my life! It's so disheartening :( my partner has not long since had major surgery on his shoulder so I've bit him and the baby to look after (and the mastiff!) and I've found it really really hard with feeling so fatigued. Over the last 2 weeks he's been gettin up with him and lettinmehave a lie in as he's noticed I'm struggling. I'm imbed by half 9 maybe 10 every night and when I get a lie in I'll get up at half 8 maybe 9 and I don't feel any different at all. But when I sleep I finding constantly dreaming I'm awake and doing all the things I'm struggling to to do day to day it's very odd and very unsettling. I used to love my sleep and now I just feel like there is no point to it I never feel rested just wishing my day away to sleep even though it doesn't make me feel any better :(

  • Yep feel like that too never feel refreshed from sleep, would love to know what that actually feels like!

    How old is ur baby? Mine is 7 months and I have a 3 yr old too, my hands are so painful today struggling with sorting kids picking them up is agony X

  • The same here every day constant fatigue it's like being in a war with your own body, a silent war that nobody else can see, autoimmune illness's are like that invisible, nobody unless they know you can tell what you're going through. I'm very lucky I have an understanding husband but I often wonder how other's go on with partners not so understanding and how they cope. I like to think in maybe thirty years from now - too late for many of us that there will be a cure for cronic fatigue, lupus and all the misery and problems that go with it and ditto thyroid, maybe thirty years too soon though more like fifty/sixty the way things are going.

  • My son is 18 months but he's the size of a 2 half year old, no one ever believes he's so young for his size. It helps he's more mobile in one way but in others I find I'm running after him for 12 hours of the day (I'm lucky he sleeps pretty well and naps during the day) but I do feel I'm missing out sometimes and that it effects him in ways I wish it didn't but you just have to get on with these things I guess.

  • Yeah I think it's just generally hard with little ones at any age when u feel so wiped out! My 7 month old is waking a lot in the night at the moment and it's killing me! I'm up and down most of the night, I just get off to sleep and she wakes again it's a killer!

    Then my 3 yr old hears her at 6 am so then everyone is up aargh!

    She has short naps but he doesn't anymore so no break from it it's full on, I'm willing them to bed at night so I can go! They don't know how lucky they are getting to go for a sleep X

  • I like your analogy, I liken my lupus fatigue as follows,

    I feel as if I have smartprice batteries and everyone around me have duracel.

    My husband said to me, you are tired why do you stay up when go to bed?

    The answer is that have to work up the energy to get upstairs, then to get ready for bed.

    I wouldn't say this to him, as he would feel bad, and that makes me feel worse.

  • love your analogy , it is so accurate too !! Trouble is others just don't understand it as you look generally well !!

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