The Insatiable Tiredness I Feel
One thing I’ll always identify with lupus is a feeling that no amount of sleep is enough. Although I occasionally wake up feeling rested, for the most part, mornings are a gargantuan-size struggle before the day’s even begun.
Of the year and a bit since my lupus diagnosis, I’d say I’ve spent approximately 90 percent of that more tired than I ever imagined I could have been. Pre-lupus, I thought I knew what it meant to be tired, that it was a simple loss of energy. I never understood that it could be so much more than just a mild and temporary consequence of activity and energy expenditure.
For some, tired is not just a destination at the end of a hard day or an irritating pit stop between activities, it’s a perpetual state of being.
At first, the fatigue wasn’t completely apparent, between the lupus-induced insomnia and high doses of prednisolone that kept me up all hours, the increasingly late mornings in bed went relatively unnoticed. But after the steroid dosage came down and I found myself sleeping more, little bit by little bit I became aware that mornings were even harder to wake up to than usual.
I’ve never liked mornings, never needed an excuse to sleep in. But after my diagnosis late starts no longer meant just a little bit after everyone else. While I could easily justify waking up at 10 or 10:30 a.m., even I couldn’t find a way to make midday or after be an acceptable time to start the day.
Climbing in to bed is a guilty pleasure as it’s often what I’ve been longing for all day, but at the same time I find myself reluctant to close my eyes as I know the next time I open them I’ll start my struggle all over again.
When I hear parents talk about how it feels to have a newborn, I often wonder how lupus fatigue matches up. The feeling of your eyes hanging out of your skull, every ounce of energy sapped from your body, feeling like you haven’t slept properly in months; it all sounds too familiar to me, yet I’m sans baby with only an irritating chronic illness to show for it all.
The kind of tired I feel because of lupus is like nothing I had ever experienced before my diagnosis. Although I had struggled to get out of bed before, there had never been a time where my fatigue was so insatiable. It doesn’t matter how many hours I sleep, I’ll fight myself to wake up at a decent hour and no matter what, I’ll still be relentlessly tired. I’ve given up on setting alarms, as I know there’s no point anymore. Even if I set six, if I don’t sleep through them, I’ll just snooze each and every one until I give in and just turn them off.
I can’t stop the guilt I feel sleeping through another morning, but I also can’t blame my half-conscious self from letting me sleep, and there is no right or easy answer. I’m merely learning to come to terms with the fact that more often than not, the mornings don’t belong to me, and if by chance I should manage to get one for myself, to truly appreciate it as a rare and beautiful gift.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Kaurie
Be strong my dear, nothing is possible one day God will heal us...I was diagnosed with Lupus 2013. I try to be positive every day, and pray sothat can get a cure for us.
Thanks
UKK
Rita Morgan
I hate to break it to you, but there's no cure for Lupus. That's why they call it a "chronic" illness. I got it when I was 20 yrs. old and am now 63 and have accepted early on that this my cross to bear.
Eddie Phillips
Hi Kristiana
This is something only someone in the Lupus family can understand. My wife Julie used to say, "wake me at 9" then I would get a sleepy "go away" and leave her until 10. Most of the time I end up leaving her until 11. Then she is up and washed but feeling shattered by 1pm.
We no longer make plans and at times it is like being hermits, but I know she cannot help it.
We just make the most of when she is feeling better and we manage to get a couple of hours out of the house, if only for a cup of coffee at the local coffee house.
Eddie
Kathy
Eddie, it is so wonderful to hear that you understand why your wife feels the way she does and that it completely changes your lifestyle. It helps for loved ones to understand how severe the fatigue is. There is always this feeling for the person suffering from Lupus that everyone just thinks I'm lazy. Before being diagnosed I felt the same way about myself, that I was just being lazy and wasting away many days in bed. While I would not wish a Lupus diagnosis on anyone, it somewhat helped me to understand why I was always so tired. I know there are still some friends and family members who think I'm just being lazy. I know it is because they have no idea how Lupus affects your body.
Victoria Sinclair
Wow it's so sad that we all feel the same about sleep. I've always hated going to sleep& in the beginning faught it tooth& nail. Now it seems all I do is sleep. I still hate it because no matter how much I sleep at least 2 hrs after I wake up I'm powerless to fight it so I'm asleep again for an hour or 2. I have slept more this last year than I have in the last 5 yrs combined. I wouldn't hate it so much if the added sleep made me feel better for the hours I am awake but that just isn't how it works. So Lupies let's just do what we have to do to take care of ourselves and stay alive. God bless us all to stay strong and as healthy as we can.
Rosalyn morris
I read this whilst fighting the depressing that comes with knowing I am sleeping my life away and at 60 I know the days are precious. However I also know it is pointless fighting it. I have had lupus on and off for over 30 years. Unfortunately as I get older the flares last longer and I have not had a period of relative remission now for a couple of years, since my lovely mother passed away. The stress of caring for her (as much as I wanted to as I was feeling as OK as one can with lupus at the time), has caused such a disruption to my body I keep getting diagnosed with new auto immune conditions like thyroiditis etc, which of course just add Tom he fatigue already felt. I don't have a social life and live alone. My sons try to understand as they have witnessed it for this long too of course, but because my condition has only relatively recently really stopped me in my tracks I see that look in their eyes, that we Lupues know all too well "she just doesn't try hard enough". These days I am very much like you, my mornings are getting later and I go to bed earlier, I wonder if soon I will get up at al but that is the depression talking I know! It helps to speak to others albeit on Forums, and I know you will all understand non judgementally because you are living it too. I just hope in the future awareness is increased and people realise how hard it is to remain positive with Lupus. However, to end on a rare positive note for me, I remember the remissions and remain certain eventually they will come again. I liken myself to Sleeping Beauty (though that is being very optimistic!,) and I try to cherish the times I am awake enough to appreciate life's pleasures. I wish each and every person with A Lupus and their Carers lots of love and hugs and I hope you too will have some good days soon. Xx
Joe Smith
This is a good forum to understand that Lupus exhaustion is not uncommon. Most days I cannot get out of bed until 2 pm. It is crazy. If I do too much it could be weeks in bed not knowing the day or time. If light is coming in the window I know it is the day. But is it dawn or dusk ? Do too much and TIA's occur. People do not understand all the problems from Lupus. I can do stuff towards the end of the day and hate going to sleep because regardless of how I feel, the next day is unpredictable. I remember the old days when you wake up, work all day then go to sleep and have a regular schedule.
Chris
This is all so true, glad I'm not the only one.
Joe Smith
The forums are great because you have the knowledge of so many people experiencing Lupus exhaustion. I cannot move until 2 pm and if I do too much I can be in bed for weeks. I am thankful my organs are not being attacked anymore but I cannot say this for my joints. Knees, shoulder and back have severe DJD. I had many TIA'S until I stopped fighting the pain and exhaustion. I used to be a workaholic. I have friends who past away in perfect health so I just am thankful to take it one day at a time. It still is no fun and depressing at times. Some doctors are real jerks but I found a few who are understand what patients go through. I cannot have a real schedule like the old days. Good luck to everyone.
Susan G. P.
I fear for all of this. I have not been diagnosed yet. I’ve had a positive ANA test and with all my other symptoms (which are many) my other doctors are leaning toward Lupus. I’m to see a Rheumatologist in about 3 weeks. I’ve waited 4 months for an appointment!
I can’t stay out of the bed. I totally exhausted. If I have to go out, it takes me about 2 hours to get ready. My shoulders hurt so bad, can hardly raise my arms. I have places on me that are so tender I can’t stand them to be touched. I have trigger thumb on my dominant hand. My vision is blurry and seems like my eyes won’t focus. They itch and are gritty.
Most days I just want to fall down and cry. I don’t remember feeling well. I sleep and sleep and never feel rested. I get up and quite often have to just go back to bed. I have so many things I want to do but when I try, I have to go and sit down at intervals. I can’t hold out to do anything. Does it ever get any better? Will it always be like this?
I know I don’t have a diagnosis but it sure sounds like Lupus to me. Time will tell. I just hope whatever it is, someone can help me. I’ve thought for so long people think I’m a hypochondriac, I’m not. I was a nurse for a long time, I’m not stupid and I know something is wrong. This has been a long process that’s steadily getting worse. 😩
Vickie Boyd
I was diagnosed with Lupus in 2014 , however for years I was really messed up and not understanding what was wrong with me, in and out of the hospital and then one day I developed lesions on my face, I went to a dermotologist and she immediately said to me you have skin Lupus, my reaction to her was NO I have Lupus PERIOD. blood work was taken and I had systemic Lupus. my levels were really high and wasnt able to see the specialist for a whole month , one i started the meds i started feeling better, but lately I have been in a lot of pain and I have changed my diet and started taking more vitamins .. nothing is working and I cant afford to not work .. this is more than I can handle sometimes
willow
I needed community on this Thanksgiving Day and am grateful for it.
Have had chronic exhaustion my whole life but managed to motor through until recent years (am middle aged), thinking I was just lazy or depressed or both.
Then hit the wall: Got Lupus diagnosis and have a good treatment team; tons of meds...but I feel like I've been in an endless flare for at least a year now.
Solid sleep is now a joke and can't be helped by the sunlight intolerance--regular circadian rhythms are gone.
I'm told the peripheral neuralgia is probably permanent but should not affect my muscles (score one for me, I guess?). Just gotta keep checking the feet as I would never feel a rock in my shoe or if my freakishly long toes got walked on all day while fully bent over in my boots.
Arthritis is kicking my butt recently.
The discomfort on all fronts can wear on one in a way that no one who doesn't have this could possibly understand.
I swear today I have rheumatoid discomfort from my feet (only numb on the outside) all the way up up to my eye sockets.
Of my tiny family, others are also afflicted with various autoimmune disorders. Sole surviving parent also has Lupus.
My husband is my hero: Loyal to the idea of us even at my worst (and we all know how low it can go).
I give Thanks. I hope each and everyone here is blessed with at least one such person, present in person, to understand.
Anon
Thank you for sharing! It's almost disturbing how accurate this is for me too. I used to be a morning person before Lupus, never even needing an alarm. Now it takes me on average three hours from my first alarm to get out of bed. I've tried everything, as you described, but nothing seems to work. If you find anything that helps, please follow up :)
Lynne Howard
I don’t feel so alone now. Thank you for sharing 🤗💕💖
Vicky
Ugh here I sit at work, completely exhausted and barely keeping my head off my desk. I can so relate to the struggle. I love my job but somedays there isn't anything in the world that I wouldn't give to be back at home in bed.
P.S.
I just found this post today while searching for why people with lupus feel extra tired all the time. Even when I get a full 8 hours of sleep, I'm still tired. Now I work at a job that requires me to show up every morning at 8am. I've learned that while it's no big deal for others, it's just not realistic for me. I really have to force myself to get up at that time, and it's not as easy as it is for others. Other people think it's simple, but it's really not. Your post made me realize that I need to be more forgiving to myself and it might be better to find jobs that allow me to be flexible with my schedule and start the day at 9 or 10am. I don't feel like myself when I wake up at 6 or 7am, and I have to spend money on coffee every morning and glug caffeine just so I can keep my eyes open in the morning and focus on work. Brain fog is also a real thing with lupus, and I have inattentive ADHD. It's a real struggle, and there's not much that can be accommodated by employers for these kinds of things. Since they're invisible illnesses, I'm often just seen as slow, lazy, and unprofessional at work.