Lupus-Induced Insomnia and a Feeling of Isolation
Part of living with lupus is knowing that your body lives outside of the norm. It means accepting that, for the most part, you have no predictable sleeping pattern, and if you should be lucky enough to regulate one, it’s pretty messed up. Living with lupus means you don’t live on the same timeline as everybody else, as yours is dictated by lupus. Sometimes that leads to a feeling of isolation.
I’m no stranger to late nights and late-starting mornings. Going to bed close to midnight and waking up well after everyone else is my preferred sleeping pattern. But lupus takes it to a whole new extreme.
For many people, going to bed well after midnight sounds horrific. I am often asked how I manage to keep myself up so late. Believe me, it’s not my choice — it’s lupus.
I’ve tried tiring myself out with exercise, drinking herbal teas, reading books, watching TV, and even meditating. Sometimes these work. But most of the time, I’m left lying wide awake and frustrated. The only thing that seemed to work is knocking myself out with sleeping pills. But in the morning they leave me feeling hungover and unlike myself, outweighing the potential advantages.
In a bad patch, I don’t sleep until at least 1 a.m., and I’ll be lucky to rouse myself before 11 a.m. My body needs rest, and while it’s incredibly important to listen and help myself wherever possible, sometimes it means that I live completely out of sync with everyone else.
Some people take my extended sleep-ins as laziness. Others see me as lucky, wishing they could sleep in past mid-morning, too. But what no one understands is that it all comes at a cost.
Have you ever been wide awake, begging for sleep while the rest of the world rests blissfully and unaware? I have, and it’s an isolating place to be. There’s a silence that only 2 a.m. knows, and when you’re exhausted but unable to sleep, it’s deafening.
Some nights I lie there listening to episode after episode of Big Bang Theory and hoping this will be the one I fall asleep to. But the all-too-familiar credit track rolls around once again and I hear another episode begin as I lie there, eyes closed, yet so far away from reaching sleep.
It’s hard to explain the feeling of exhausted restlessness. You feel so alone knowing that the people who would help you in any other situation are fast asleep. You have to face this alone. I can’t justify waking someone up just because I can’t get to sleep. It seems selfish and mean. But I hate the silence and waiting.
There are moments when time flies and I wish I could hold onto it with both hands. And then there are times like these. Moments when every minute stretches on for hours and I can’t bring myself to check the time. It’ll only remind me of just how long I’ve spent begging the night for sleep.
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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
LisaJo
This is exactly me. I stay awake every night until 2, 3, and even sometimes 4 in the morning listening to Star Treks Voyager episodes waiting to finally drift off. I get up at 10 every morning so I'm up before my husband comes home for lunch. I always feel ashamed that I can't get up earlier. And no way can I take a nap. I have a major sleepy time around 6 in the evening but if I ever indulge in a nap I know it will start an even worse cycle of not sleeping at night even later than my already late nights.
I've come to realize that this is just my life now and I'm a very lonely person because of it. Living my late nights alone and dark while the world sleeps...
Lis
Thank you for writing this. I have been struggling with this issue for many years now. Thankfully, I was diagnosed last year and know why this is happening. I just wish there was a cure.
Eddie Phillips
Hi Kristiana, this is a great subject even now Julie can feel guilty about sleeping in, and I always say "don't worry about it".
Maybe all Lupus warriors should arrange a 2am skype call....lol
The hardest part is getting friends and family to "really" understand the fatigue that accompanies Lupus.
Look forward to your next column
Eddie
Nicole Criswell
I wish I could say I agreed that I have the same problem but I suffer from quite the opposite. I never ever ever sleep for more than one hour at a time without waking up at least once. well I have the trouble falling asleep that you speak of in this article I cannot stay asleep to sleep in no matter if I go to sleep at 1 a.m. I am up at 3 a.m. at the latest no matter what time I go to bed and my whole day is taken over by chasing a nap trying to get a little bit of sleep and somewhere before my kids get home or before my husband eats dinner made for him. I am so so tired all the time that my body is just giving out on me my body feel so Restless all the time that is the reason that I can't sleep I sit there and fall asleep over and over while sitting trying to watch a show but if I were to lay down and try to fall asleep it's not going to happen and if I do I fall asleep for such a small amount of time and wake up feeling like I just slept for hours. It leaves my body in so much pain in my mind so overwhelmed I don't know what to do anymore some days I really feel like I can't live like this anymore. Is there anybody like me that shares the same problem is there anybody like me that is so tired or just can't sleep at all
KLewis
You did reply to your answer I would love to read it I have now been sleeping from night night to 12 midnight I'm up until 5 I fall asleep at 5:30 I'm up at 6:30 and getting ready for work I know it is my lupus I make it through the day when I get home I just want to sit if I lay down across my bed to read something or sit on the sofa and turn the TV on and I fall asleep I'll wake up at 9 or 10 p.m. and I'm up the rest of the night don't know if it has something to do with the change in the atmosphere are the weather seems like this is a bad year this year inow average probably 3 hours of sleep per night tonight is my first night where I have been up since Friday night I woke up at midnight it is now Saturday at 2 a.m. and I still cannot fall asleep so I'm going to try to find the answer for this this week I've tried the sleeping pills but it makes me so tired I can't take them because I either get up late for work or I'm tired at work so there has to be a solution or some type of Mind exercise or something that has to be out there for this I find something I will let you know
Deborah Fitzgerald
Nicole,
If you haven't had one you may want to have a Sleep Study done to make sure you don't have Sleep Apnea. I was waking up several times a night. I talked to my doctor and she suggested a sleep study. I DO have Sleep Apnea. I had stopped breathing dozens of times during a 5 hour study. I now sleep with a CPAP and sleep good! Talk with your doctor about it. It may be your answer too. GOOD LUCK!!!
Debbie F.
Michelle Williams
Nicole, you just described my life. I was diagnosed with Lupus about three years ago. My body has undergone so many changes. I first experienced being over exhausted but unable to fall asleep. Needing sleep aid to get to sleep. Now, I am very tired everyday. However, when I sleep, the most I will sleep is about an hour and a half to an hour and about 45 minutes. Unfortunately, I have to rise at 5:40 am to get to work. The most awful thing about my day at work is being so exhausted that I uncontrollably fall asleep while working. You do fell alone at times especially when your family is not understanding.
Sue
The one thing those of with Lupus seem to share is our 'norm' doesn't match normal norms. The two words sleep and patterns don't sit together in the same sentence. I've gone from being out for the count, crashed out 20 hours out of 24, no use to anyone to sitting in front of the tv in the early hours watching reruns of Quincy, no sensible pattern in between. Sometimes it's pain, sometimes it's restless legs, sometimes intense itching, sometimes dystonia, sometimes it's stomach related, sometimes all of it, keeping me awake. Restful sleep is something I can only dream about if I could drop off in the first place.
Carrie
Thank you writing this it's so nice to know that I'm not alone. I have tried everything to fall asleep and it never works.
Lupus definitely controls my life although I keep fighting to have
control of my own life.
I'm so exhausted during the day, but still can't sleep. Having to be up by 5:00 am when your lucky to be asleep by 3:00 am makes for a very trying day.
Jacqueline Jackson
Hi everyone you are not alone i was diagnosed in 2012 share with you not sleeping one day i was on my way to work had a accident fro not sleeping one day i felt like i was losing my mind i cry many days wanted to sleep so bad,i end up going to mental health doctor it took a while i found the right combination of meds i am able to sleep.hope this help those who aren't able to sleep.
vanessa b
I barely started with insomnia last year but it's something I don't wish upon anyone. sorry to all those who go through this. The only thing that has finally helped me after a year of trying different remedies has been smoking marijuana (I live in a legal state). I was actually really hesitant to try it because I don't won't to depend on any sort of drugs. I had full blown insomnia, could not even get 5 minutes of sleep for weeks at a time. It's a real hell and felt like I was on the verge of insanity. I know it's still quite taboo but smoking has truly been a life-saver when nothing else has worked.
Lisa Gray
I have just been diagnosed with Lupus. I am the exact opposite in that I wake up between 2am and 4am every day regardless of when I go to sleep and then can’t get back to sleep for the rest of the day even though I feel exhausted by midday. I was told that it is the steroids that are causing this so I was hoping things would get better as my dosage is decreased but it looks like this may not be the case.
Terri Mercer
Oh lord, I literally cannot fall asleep at all some nights even with sleeping tabs, I have been up for 3 nights straight once, sometimes only one, sometimes 2. I fell like I’m losing my mind. My steroids are at maintenance dose so it’s not them. I’ve tried the blue sleep light, magnesium. Sometimes pain keeps me awake but I’m at the end of my tether
Shavawna Flugence
First let me say that you are all so strong and brave... but whats crazy is that I don’t feel that way about myself at all. I was diagnosed at the age of 23 and I am now 35. Single, no kids, no life! My life changed completely! Last night for example I wanted to be asleep by 10. That didn’t happen and even after taking my sleep medication and falling asleep by 12, I was waking up every two hours just to check the phone and realize how frustrated I was that I didn’t sleep knowing I had to be up to attend class at 8. Sometimes I don’t know how to feel. I’m drained but will not fall asleep. How is that normal? My mental state is the worse. Depression, feeling alone and I don’t have a problem staying away from people because hey, it’s less that I have to explain and I really don’t have the energy to get them to understand why my life is in shambles!
Ashley
I'm just reading this and this hits home so much for me I'm up all hours of the night my body aching and flip flopping it really is irritating....it is nice to know I'm not alone in this thank you...💜 I was in ICU last year and had to do a round of chemo it took them like a year and a half to see it was lupus and now I have something wrong with my lymphnodes they dont know if it is all connected sometimes the pain is so bad I black out I go to the hospital to be hooked up to iv's 4 or 5 hours they take pictures of my lymphnodes and tell me my case is different from anything they have seen...thank you for this and for letting me know I'm not alone 💜when everyone around me gets tired of me I feel like I'm always got something swollen or a fever or my hands are so swollen I cant close them sometimes I just wanna be "normal" and not say I'm hurting I feel lupus gets pushed back and not enough awareness for this....
Valerie Aura
Well NONE of the doctors I see in an effort to deal with my lupus have ever told me insomnia is a symptom of lupus. In fact I’ve told them ALL about my insomnia and they just don’t make any comments other than ”…be sure and go to bed at the same time each night. That may help you sleep. It has nothing to do with lupus…” Researching on the internet is so so important to learn about things!!!!
Kayla
It's 4:20 AM as I type this and I haven't slept. It's been like this for weeks.
I'm so thankful to find this article. I've always felt the shame of this messed up sleep cycle. Always running late because I woke up late because I didn't fall asleep until sunrise. I've been given every bit of sleep advice in existence at least twice. It's impossible to get on a normal sleep schedule. Hearing that others know exactly how I feel makes me feel a little less alone and knowing it's related to this means it's not my fault (!!!) which is such a relief I might cry. My whole life I've been looked at as lazy and uncaring because of this stupid problem. And no one gets it. They just tell you to go to bed earlier.
Or try x, y, and z. As though I haven't already tried everything in the book.I just wish I could fix it.