People have the notion that CFS means you’re depressed and sleep 20-24 hours a day. That’s not necessarily accurate.
When the virus is active, yes, like anyone who has the flu, you’ll sleep a lot because having a virus is exhausting. Being sick wears down your body, and sleeping a lot helps you get well.
But when you’re not actively sick/fighting the virus, it’s just as likely that you’re not sleeping well. When this relapse started, I was going to bed as early as 8 PM, but tossing and turning until 5 or 6 AM before finally getting an hour or two of sleep before I had to get up to go to work. Insomnia is a recognized symptom – common enough to have a nickname "tired and wired", you’re exhausted enough to collapse into bed, but still can’t get to sleep.
Unfortunately, I ran into a doctor who couldn’t differentiate between "time spent in bed" and "time spent asleep"; according to him, the amount of time I spent in bed proved I was getting plenty of sleep and didn’t need a sleeping pill to help me sleep. It was not until I found a doctor who knew how to listen, who actually heard the part about actually sleeping only an hour or two out of the many hours that I spent in bed, that I got sleeping pills to stop the deterioration.
Ordering a sleep study would have given that first doctor the proof that I wasn’t imagining things, I wasn’t exaggerating, but because he didn’t know that CFS is neither laziness nor depression, he simply assumed that he knew better than I did what went on at my house at 3 AM and revised my reporting to match what he wanted to hear. I knew I was awake all night because I was in another room knitting scarves, reading books, sending e-mails; he was just as adamant that I was actually in bed sleeping, and just convincing myself that if I looked at the clock at 2 AM and looked at the clock at 4 AM, I "thought" I was awake from 2-4 when really I’d slept most of the intervening 2 hours. My evidence that I had not been asleep wasn’t what he wanted to hear, so he convinced himself – and tried to convince me – that I was confused about how much I was sleeping and when.
Then he set out to convince me that the reason I couldn’t sleep at night was because I was napping during the day; that might have been the case after I lost my job, but when the problem started, I was in an office all day and someone would have noticed if I had been sleeping at my desk. But, it was a pat answer that could let him put the blame on my sleep habits rather than searching further for the root cause, solving the pain puzzle that was actually to blame for keeping me awake all night.
Eventually, I got into a clinical trial for an experimental sleeping pill. Step one was to fill out a detailed Sleep Diary, recording each night what time I went to bed, what time I fell asleep, how many times I woke up during the night, how much time I spent awake during the night, what time I woke up, with or without an alarm clock waking me. With documentation showing that level of specificity, it became apparent to the doctor running the trial that I was not exaggerating ... I had what was classified as a severe sleep disturbance, averaging 2 hours sleep a night. He asked the right questions, and got the responses that helped him to see that I was functioning because I was able to nap during the day, bringing me up to 4-6 hours of sleep in a 24-hour period. If I had a job during the day, I wouldn't be functioning because I wouldn't get those naps essential to keeping me going.
Whereas the other doctor added up the hours I spent in bed to conclude that I was sleeping excessively (which is what his desired diagnosis of depression required him to see), this doctor concluded that I was probably tired all the time because I was seriously sleep deprived despite spending a lot of time in bed trying to fall asleep. Part of the commitment for the clinical trial was avoiding daytime naps; sure enough, when I was getting 7-8 hours of good sleep at night, I had no need to nap during the daytime because I was well-rested: I could lie down during the day because I felt faint and had no urge to go to sleep even though I was lying in bed.
When I was immediately back to 2 hours a night every time I went on placebo, it became apparent that the problem was not "poor sleep hygiene" or "a need to retrain yourself to sleep at night" – the months spent on the actual drug should have re-set my body clock if that were the only problem. But I could tell the very first night of each pack of pills whether I was on Study Drug or on placebo; the effects were that dramatic: on Study Drug I fell asleep in 15 minutes, on placebo I tossed and turned till 5 AM. For a full year in that clinical trial, I went to bed at the same time, took the pill at the same time and got up at the same time, exactly what you’re supposed to do to correct a sleep hygiene problem. Yet, even after a year of carefully-documented good sleep hygiene, I could not fall asleep until 5 AM without the magic pills, and we knew that was not just "placebo effect" because I’d had the same reaction when I was taking the placebos.
My first specialist in 1988 had told me the key to recuperation was to ensure the patient was getting good quality sleep – someone who sleeps badly 20 hours a day may only be getting the equivalent of 3 hours of good sleep. If you look at it that way, it’s no wonder CFS patients are tired; you’d be, too, if you were living on 3 hours of sleep for months or years on end.
Researchers have found a variety of problems that prevent CFS patients from getting the deep sleep they need. If you can get the patient into deep sleep, their body begins to heal itself. It’s not a full cure, the cause of CFS is more than just sleep deprivation, but better sleep will improve your immune function, which will allow your body to get the upper hand over the virus. I’ll never be rid of the virus, but if my immune system is working I can keep the virus in check so I’m not deathly ill, just "inconvenienced" -- before getting on sleeping pills, I caught everything that came down the pike; now I'm not constantly sick with every cold/flu/bug that's going around, though when I catch something, I'm still sick a lot longer than a healthy person would be.
Unfortunately, too many CFS patients run into doctors who don’t understand the difference between quantity and quality, and like my doctor, believe that "there was no need for a sleeping pill, you were already sleeping too much" without taking into account that bad quality sleep is going to require much more time to achieve the same recharging results.
Ordering a sleep study right off would have saved me years of agony and proved that I knew what I was talking about when I said the problem was easily solved with sleeping pills (or at least pain pills that would let me get to sleep) so that I could get a reasonable amount of sleep each night.
Since the Disability judge has the same notion that I’m just lazy and depressed and sleeping my life away, I’ve taken to noting in my symptom diary that I "spent 12 hours in bed, only 3 of it actually asleep", or that although I slept till noon, the fact that I didn’t fall asleep till 6 AM means that I am not sleeping excessively ... 6 hours of sleep is a perfectly reasonable amount of sleep for a 24-hour period, I just was not able to force myself to fall asleep at a normal hour. Falling asleep is related to cortisol level, and research has shown a cortisol problem in CFS patients.
Now that the virus is no longer running rampant, I don’t need a lot of sleep to deal with the system overload caused by fighting the virus. But, like everyone else, I do need to get a good night’s sleep to feel my best, and 2-3 hours a night doesn’t cut it. If I haven’t fallen asleep till dawn, then, for the sake of my health, I need to get 6-8 hours even if it looks like laziness to other people that I therefore don’t get up till noon.
I once had a boss who was definitely a Morning Person. He’d bound out of bed at 4 AM and be at his desk before 6. I’d stagger in at 8:30 with my eyes half-open and barely functioning. The only explanation he could imagine was that I was lazy. Well, then we had to do trial prep. At 5 PM, he was lagging, and I was just hitting my stride. At 8 PM, he was ready for bed, and I was in top gear. When he left at 11 PM, he was half-dead, and I was just getting my second wind, cheerily assuring him that I would finish up, no problem. He looked like I’d totally flipped when I said "it’s not that late" and dove back into the pile. The computer-generated times on the last documents showed that I was still there after 2 AM. He did the math ... I’d just put in an 18-hour day without complaining, and was there on time the next morning (i.e., I’d gotten less than 5 hours sleep). He finally understood: I’m not lazy, I’m an Owl. My body clock runs on an entirely different schedule than his. Doing trial prep, he could see that there were times of day that the situation was reversed: he was the one who was half-asleep and I was working all-out. He apologized for thinking badly of me; he had never seen me operating at full speed, because I didn’t reach my peak during normal business hours.
In the same way, if people had the actual facts, and not just their erroneous assumptions about CFS, they would be less likely to make disparaging remarks. I’d like to see one of the people who calls me "lazy" and "unwilling to work" continue to function at work after months of sleeping only 2 hours a night; they’d probably give up long before I did.
Someone who hated their job and was always looking for a reason to quit will never understand that some of us loved our jobs, planned to work until we died, and never had any intention of giving up our careers for husbands, kids, or even a winning Lotto ticket. It’s been my experience that those who are willing to manipulate a spouse to avoid having to hold a job simply cannot grasp that this is not the goal of every human being; there’s a comic strip on my fridge that says something about "you know you’ve found the right job when you’d be willing to do it for free", and that’s how I felt about my paralegal job. It broke my heart to be told that I would never return to the work I loved.
I have finally found a job that uses my skills and education, but allows me to work during my most functional hours, i.e., after 5 PM. How many of the detractors are still working at midnight? I often am. But, like my Morning Person boss, they can’t fathom that it’s not laziness, just that some people find it more natural to go to bed late and wake up late. (I was raised in a family of nightowls; an old friend and I once went out for the evening and when we got home before midnight, my mom’s first reaction was that if we were home that early, one of us had to be sick. To me and my family – some of whom worked nights their whole career – it’s equally weird that some grown-ups go to bed before 10 PM. But we would never be so rude as to call them names because they run out of gas long before we do.) I have known for 30 years that I get my best sleep after 6 AM, but the business world doesn’t care; they expected me to get up just as I was hitting the most recuperative sleep phase.
Nowadays, without the physically-exhausting task of fighting the virus, I’m sleeping a reasonable number of hours a day – rarely more than 8 – even though it’s not on the same schedule as most people. Dr. Murphree suggests that it takes at least one year of good sleep to make up for each year of bad sleep, so I still have a ways to go to reach maximum improvement. Maybe in a couple years I’ll be back to working circles around most people, when I’m allowed to work in harmony with my natural sleep schedule. (By some measures, I already am ... when my back-up was doing this job as a full-time employee in an agency office, she had a daily minimum quota that she had to meet; the other night, I did the number of pages that her boss considered 8 hours of work in just over 2 hours.)
Whatever your reasons for verbally abusing CFS patients, let me assure you that calling them "lazy" and making jokes about them "sleeping all day" proves only that you don’t have a clue what CFS really is. You clearly saw the word "fatigue" and jumped to conclusions without ever reading further to learn about the virus, the neurological aspects, the immune system dysfunction, the cardiomyopathy, and all the other problems that go far beyond your fantasy of spending the day on the couch, eating bonbons and watching soap operas. There’s no fantasy in the reality of spending the day on the toilet, having to morning, noon and night eat the one and only food that doesn’t come right back up, and not being able to watch TV because your short-term memory problems mean you can’t follow a plot.
Maybe the real problem is that those of you who won’t even try to go to work on 2 hours sleep, and those who aren’t still working at midnight are lazy, and that’s why you choose to see that trait in me?
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