Sunday, 16 June 2013

Living with N24 - some select quotes.

I've been sitting on some data longer than I should have. A while ago a ran an open-ended online survey posted to various places online where fellow N24s congregate, to get a grasp of what the quintessential "n24 experience" is. Hayakawa et al. come the closest to something like this in the literature;

"In the study presented here, 56 of the 57 patients (98%) had a history of disturbed social functioning due to inability to regularly attend school or work."

"It is possible that these patients had tried to adapt themselves to their social life and failed, leading to  psychological stresses that could have precipitated their depression."

My goal in collecting the data was to have the first in-depth study of the more phenomenological aspects of N24 - whether that'll actually be accomplished, I don't know, but sitting on the data forever would be wrong, so here are some bits that particularly jump out as being good exemplars of what N24 really is, separated into 'themes'. The data come from 6 people, and there's something like 15,000 words in total. Might not seem like many people, but as of 2006, that's more than 6% of the total number of published sighed-N24 cases. All errors are [sic]!

Early life and education

“Before [n24], a had DSPS for a number of years that became less and less compatible with university. When I was in high school, I had fatigue issues, needing to sleep for 15+ hours a day for long periods of time. University has become near impossible for me to attend, despite how hard I try”

"My N24 began, I think as DSPS at around age 11, and gradually got worse over the years."

"My teens were hell. I was constantly struggling to get to school on time and I went from being an A* pupil in all subjects at age 11 to D grade by age 15."

"I was on detention every Thursday after school for over 2 years due to consistent lates and absences (some caused by oversleeping beyond the school day and some due to ill health from sleep deprivation.) When I was in school I was unfocused and unable to concentrate."

"I know I was definitely skipping the odd day/night of sleep here and there to make it in to college.
I remember one time I was so desperate to sleep I banged my head against my bedroom wall repeatedly. It didn't work."

"I started progresively to having problem falling asleep in bed, waiting for hours and hours for nothing. So I started reading and living at night when i was a child."

"DSPS began to develop in my teens. I had difficulty getting to sleep and thus had to make up for sleep deprivation by taking a nap after school."

" It was at college that my DSPS became severe.  I can remember by year.  The first year I missed all my 9am classes; 2nd year, 10am; third year 11am; and senior year even noon classes were hard."

"[low attendance, high-grade] all gelled into the general opinion that I was smart and capable, just lazy."

" I would start out strong and do well for a semester or so, though performance would flag near the end of the term, and then continue a downward spiral as time went on"

Doctors & Diagnosis

"I felt validated after I'd been diagnosed. I knew what the diagnosis would be beforehand,, but to hear a name given to something is immensely relieving. You become someone with a real issue, rather than that person who can't get out of bed because she's lazy."

"My GP did not believe me and I was forced to do an "end run" through a psychologist (who did believe me) and gave me a referral to a sleep specialist who also believed me"

"Up until the age of 29 my GP kept trying me on counselling courses, various antidepressants and very occasionally a hypnotic such as Zopiclone ...  I changed to another GP at a surgery nearer to home. This GP was much younger and seemed more interested in what might be causing the "insomnia"."

"I remember reading the Wiki page on DSPS and N24 and the feeling of amazement at how closely it matched my life. I actually cried (I'm even welling up remembering it as I type!)"

"I was relieved that i had a condition, and that what i was experiencing was not the regular life of a healthy person."

"One doctor thought I had Multiple Sclerosis and when tests proved that not to be the case decided I was a hypochondriac and referred me to a psychiatrist. Another diagnosed Munchhausen's syndrome.. [after diagnosis] I was relieved and hopeful."

"It was a huge relief that there was a name for it, and that I wasn't the only one. However, the chances of being able to correct it seemed pretty dismal and that made the whole event kind of bittersweet."


"I'm really worried at the moment. I'm only just at the 'accepting I have a disability' stage. I don't know if I even can finish my current degree."

"N24 is unmanageable in a 24 hour world. Work schedules are impossible to maintain for either myself or any company willing to try hiring me."

"I don't believe it can get worse or any different to manage. My economic and social lives are completely unmanageable"

"After several months my punctuality became too much for my employer, a relative of my best-friend, and I lost my job. I felt so bad for letting him down. I heard the line that would follow me for almost every job to come: "You're good at your job but we can't rely on you to be here."

"The job centre were not helpful at all, and I had problems because my "job seeker" appointment time was in the morning and I kept missing it. I had no idea what was wrong with me back then, and "I overslept" does not go down well."

"[A new job] fell through ... partly because they just didn't realise how difficult working around my sleep-patterns really is. During this job I was accused again of being lazy and also of being "work shy" From that point on until age 30 is basically a cycle of doing jobs I liked (I worked in IT and Software Development in the NHS) until I was sacked for bad punctuality and attendance"

"With the tools available in France for disabled people, i'll could negociate with enterprises about my hours and adapt the work to me. It's in discussion with some people to see what can be done or not"

"Economically my prospects are not good. The fatigue and N24 are very impairing."

"I continued trying to work, and trying to figure out why the one thing I couldn't seem to do was show up regularly"


"My GP first recommended sleep hygiene (like anyone and everyone before her)"

"My sleep patterns reached critical mass, and I was suddenly flung into free-running. So I stopped the melatonin and lightbox and just went with it. Now I'm in a pattern where I try to stop my sleep cycle for a while until it decides it's had enough, then I free run around the clock until I have to pin it down again. I wouldn't exactly call it effective."

"The best I can do is try to keep my schedule as regular as possible and mostly not deal with the 24-hour world when I am on a night schedule. This leaves me mostly a hermit for long periods of time with shorter periods that I can interact with the community outside."

"Melatonin helps me feel sleepy, but doesn't fix the N24. I've been asked to try a lightbox too, however they aren't available on the NHS and they are well outside of my price-range so I'm unable to do this."

"Treatment certainly does seem to be about fixing the problem. I am absolutely dreading a phase of treatment which I'm sure I'll be made to do - this is the strict regime treatment where you must eat certain foods at certain times of day, never have a late night or early morning, always adhering and never wavering. It sounds like absolute hell. I didn't sacrifice my career to have to go through all that, I sacrificed it because I was so tired of failing and of being so ill and run-down all of the time. Since I stopped working 13 months ago, I've only been ill a couple of times compared to the constant colds, migraines and coldsores I had while working. I don't want to have to go through it all again."

"Concerning "treatment" now it's this choice : forcing my sleep patterns and having a very very stric sleep hygiene, with th risk of being extremely tired, or living at my own rhythm, "fuck social conventions" and adapt my work, friends, relations and environment to my condition. the goal is to overcome this choice and find a middle way"

"I would call the treatment a partial success. They did succeed in, at least temporarily entraining my sleep cycle, but the regimen was a draconian one and did not solve all the problems... There was only a short time during each day when I felt close to normal and my quality of life was poor."

"Melatonin therapy left me sluggish and drowsy for most of my waking hours. Light therapy was a resounding failure - I was able to keep a 24 hour schedule but I was on the verge of a total breakdown and near suicidally depressed by the end of a month"

Family and Friends

"My mother believes me, mainly because she witnessed me being incredibly fatigued all the time as a teen ... My father thinks that if I see his Chinese Medicine practitioner/Acupuncturist, I'll be fine. Apparently she says it's because young people use their computers a lot/at night. :| I would give it a go anyway, but I'm deathly afraid of needles. He also thinks I'm being 'negative' when I say that it's not just going to go away, and that I am having trouble even thinking of a job I could plausibly do."

"My friends understand but it is still difficult to have a social live due to my varying schedule. Going to parties is more or less a crapshoot unless given enough time to adjust my sleep schedule"

"[N24]  leaves me mostly a hermit for long periods of time with shorter periods that I can interact with the community outside."

"I've recently just ended a 4 year relationship because I could not stand any longer the overwhelming feeling of guilt for letting my partner down on special occasions. Although he does understand my N24 better than most non-sufferers, he couldn't understand how bad I felt when I overslept for his birthday, or Valentine's day, or any number of other occasions. I just couldn't do it any more. I want him to find someone normal who he can spend those special times with and who can be there when he needs them to be, and I know that that is something I'll never be able to do."

" I've thought about how much I would hate to pass [N24] on to my child. I would never, ever, ever want to put another person through the hell I've had to go through."

"There have been many difficult things - the biggest one has been arguments with both parents and siblings trying to wake me up for work. This always led to massive rows. Other difficulties were when my sister and her boyfriend lived with me, I would be disturbing them by being awake when they were trying to sleep, and vice-versa."

"I have found that the only way I can make things work is to live alone."

"[Father] isn't well (our family has congenital heart problems) and is nearing retirement age, and should be enjoying the money he's earning rather than having to support his 32 year old son."

"It's difficult to have a social life when your hours are not social most of the days. I have the most contacts with people with strange or also chaotic sleep patterns. It's more difficult to find time periods in common but they live the same situation so we understand each other. We use the phone and emails extensively."

"My partners have understood, but as with the friends that is the result of a weeding out process.  There have been many potential partners where the relationship never got off the ground due to lack of understanding of N24 or of the secondary effects of N24 (lack of employment and money)."

"What is hardest is explaining it to new acquaintances, for example someone you might meet at a party.  It tends to derail the whole social process. The inability to remain employed has an even more profound effect on my social life.  It's not something people accept."

"My parents have been supportive and accepting, and tried to help me find ways to deal with the work issues that have arisen and always kept an eye out for work from home possibilities, or at least things with flexible scheduling. I know I was hard to deal with as a teen and I've apologized a number of times, and I think they appreciate that and understand that I'm really trying to get this all figured out. My older brother has been the most difficult to deal with, as he's always been at the front of the people saying I just needed to grow up, suck it up, find a job and stick to it, etc."

"I have no social life. I see friends maybe twice a year. I can't stress how much social life I don't have. Absolutely bugger all. Part of this is down to not being synced up at the right times to do things and part is because I simply can't afford to do anything"

Wider Socetial and emotional .. Things

"It would be very useful if people didn't equate 'sleep disorder' with 'insomnia'. I would probably get fewer well-meaning people saying 'I hope you get some sleep!'. People also don't really see sleep disorders as serious disabilities, even though basically every one I can think of can be."

"People think you're either doing it on purpose or because you're just too lazy to try hard enough. The worst thing is that after years of being told that you start believing it yourself. I wouldn't wish this thing on Hitler.
At least if you have a limb missing people can see that. CRDs are truly invisible disabilities."

"Another major thing is loneliness. When you're totally out of sync with your entire social circle for weeks at a time, you really feel it. You can't even call them on the phone as it'll wake them up. You can keep in touch, but not in real-time, and it's just not the same. Some nights you just feel completely and totally on your own. [Internet groups] do help, but it's not the same."

"We N24 and DSPS patients need support groups. Great local supoort groups, open all the day and night. 
And to be recognized. As for sleep conditions in general. Here in France the regular doctor had something like 4 hours of courses strictly about sleep/wake during his college training. It's a shame."

"And society need to be educated about our condition. That not everyone have the chance to live on a 24 hours clock. It's always the same thing : the majority crashes the minorities. It's not enough."

"Socially, the Internet has been of great help. I had N24 long before I had a computer (putting the lie to the "it's cause you stay up all night on the computer" theory).  That was a lonely life.  Now I can contact other people day or night; both other people with sleep disorders or just potential friends/partners. I am actually a pretty sociable person were it not for this damned sleep problem. The internet has not solved all my social problems. But it is a help."

"For me, I think the concept that as long as you sleep enough, it doesn't matter when you sleep was the most difficult for me to overcome, and that people seem to have the biggest problem understanding. Most folks on a 24 hour cycle seem to have the opinion that as long as you're getting that 6-8 hours, it should be enough, period"

"People think you're lazy or inconsiderate or any number of things, and there was very little information or understanding of how much these things could matter, so as a sufferer, I was left just assuming they were right, and there was something wrong with me. Not in a physical sense, just in a functional sense, one that could be modified if I tried hard enough or really wanted to... which is a rough burden to put on a child or teen."