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DSPS. Sick And Tired Of Trying To Adapt, Always Being Tired, Missing Out On Life And Being Misunderstood. Time For Change!

If you read this story and suffer from Delayed Sleep  Phase Syndrome yourself, this probably will sound pretty familiar to you. I've had an enormous mental benefit of reading all of your stories, knowing that I'm not alone and that what I'm experiencing is nothing to be ashamed of. Therefore I've decided that I'd start sharing my own story here, hopefully adding some additional personal bits to the already huge heap of insight and recognition. After that I really would like to digitally get in touch with some of you for a possible documentary or book about DSPS that I want to make, so if you find my story too boring or way too long... please at least skip to the final part and read that! :) But first... my story:


My story
Here I am, having another one of those "I'm totally fed up with 'it', now I'm going to do something about 'it'"-moments after another long period of first trying to force myself into a regular sleeping pattern, but eventually succumbing to the sleep deprivation and feeling enormous guilt while sleeping through the morning and early afternoons. It doesn't seem to matter what I do or try... it seems to have a continuous effect on my physical health, mental state, social life and love life.

Either... I try to adhere to the rhythm of the society and it's inhabitants around me, taking the extreme tiredness for granted, trying to work during normal business-hours, go places, meet friends, going to parties but eventually avoiding those same activities because the sleep deprivation takes over, the urge to go out and meet people completely backfires into a 'cocooning mode'... and my changing physical appearance even makes me loose my self-esteem at times. (Having a naturally pale complexion does not help when your sleep deprived... and the zombie-look is not fashionable yet despite the recent success of zombie-themed media... ;)) I develop these hard-to-get-rid-off dark circles under my eyes and people start to look at you as if you're extremely sick or an (illegal-substances) addict.

Or... I just give in to the DSPS, which means staying up late spending my time watching TV, not even bothering to go to bed before 03:00-04:00 am when the first 'drowsiness' starts to kick-in, falling asleep around 05:00 am and waking around 13:00 pm feeling pretty well. But then the guilt starts... I'm the co-founder of my own business so I want to be available during business hours, people expect me to be available and depend on me. I really do want to partake in the evening social life with friends and family, effectively giving me only half a working day. At night I still want to try to leave room for me to 'get tired' and hopefully 'start picking up the right rhythm' but it never does. People around me know of my sleeping problems, I've tried to make it clear to them what DSPS means, but they just don't/won't understand, even when they say they do. I can see the disbelief in their eyes and hear it in their remarks, and they all think in the back of their heads that it must be me and my sleep hygiene or other self-induced causes.

I've just hit 30 and like many stories that I've read here, I've just discovered the existence of DSPS a couple of years ago by early morning Google searches while lying fully awake in my bed and realized that this is EXACTLY what's wrong with me and what I'm having a personal war against for as long as I can think of. (But of course I "just made myself think this is what I have..." ;))

As many of you I've always believed that I was the cause of my own problems... either I just watched to much TV late night as a young kid, parents always had to get me out of bed, always had problems staying awake the first hours of middle-school and high-school. During my university years, living in a 6-person student house, there were even many more possible causes and/or distractions... as you might imagine. But... one thing kept constant during all those years: even when on 4-week 'boring' nature vacations with my parents I was always fully alert late at night, unable to sleep before 03:00/04:00, had a hard time waking up and being active in the morning (although I always tried or had to!), constantly fighting the sleep during the day, never succumbing to naps but still laying wide awake at night. No. Matter. What. Even after huge sleep deprivation (a couple of hours per night for weeks) I could see the same pattern. Sleepy/drowsy during the day, wide awake at night. I was always the last one to fall asleep. Always. No matter how much alcohol or substances I used, same thing. That made me eventually realize: no human could ever possibly do this to themselves or would want to do such a thing to themselves. Constantly fighting against your own body, mind and tiredness and coping with this while trying to have a 'normal' life. Constantly trying to hide the 'sleeping in' in times that I just really needed to get some rest and was at the point of physical break-down.

I've now reached a point where I honestly think that  there sadly will be no cure and that it will probably (you never know with nature... :)) never change for me. I realize now and feel that I finally 'dare' to say I've tried enough things and experimented enough during my life to say that I'm suffering from DSPS. All the 20+ years of war (that's how it felt for me most of the times) against my own 'baked-in natural sleeping rhythm' have only resulted in breaking myself down both physically as mentally while improving nothing. That must stop now. I've got to think more about myself and care less of what others might think of me. The only problem being.... I really want to participate during 'normal hours' and especially the early morning, which is an impossible mission. Hopefully I'm able to slowly let go of that false ambition and realize that I will get even more out of life by giving in to my out-of-sync rhythm.

To end my story I'd like to stress that although I really have an extremely hard time fighting this personal battle, at the same time it isn't all tragic... I've got plenty of 'good moments' in which I enjoy being with my friends and family. Maybe less that I would have liked, but up to now that just makes them more special to me. Hitting 30 really made me think that I could not continue the same way I did the past 30 years. Time for change. Don't know exactly how yet... but giving in to the DSPS and shaping my life around it will have something to do with it. For me it's about coming to terms with it and myself.


About my DSPS documentary / book project
Also, I'm exploring the idea to make a documentary or book about people coping with DSPS and their personal experiences and the challenges that it brings. The main idea is that, like the stories here, it will be a beacon of recognition for others suffering (maybe still unknowingly) of DSPS and to create a better understanding for the general public and people around DSPS 'patients'. I really think creating more awareness and sharing experiences will help a lot of us to feel better about ourselves. First, I'd like to start generating a contact list of people suffering from DSPS, so I can start contacting them to get more information, gather more stories and/or send some initial surveys.

I would appreciate it if anyone who is willing to participate can send a private message to me containing (if not already available in your profile):
- a signal that you might be wiling to participate in sharing your personal story as a part of a book or documentary about DSPS
- your e-mail address (so I might contact you for more information, not depending on this website/forum to do so)
- some personal information so I can start making a anonymized rough 'map' of DSPS patients around the world (gender, age(range), city, country, current & past occupations in very general terms / sectors)


Finally... the end
Thanks to anyone who spend his or her valuable time reading my story and/or my call for information!

If anyone has any questions, about me, my DSPS experiences or the project... just fire away in the comments or via an EP private message! I think one of the greatest things of this 'forum' and all your stories is that we can finally ask each other about our personal experiences and opinions without being judged. Especially since there isn't a lot of (good) information around...

Greetings from Holland!
veew veew 31-35, M 20 Responses May 5, 2012

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Sorry all of you for making you think this thread was deserted. Well, it was the past year... I had to take care of myself for a while first having hit an all-time low due to some coinciding circumstances in combination with the DSPS, but I'm back and more ambitious than ever.

It might take an even longer time again, but I will definitely make something to help bring awareness to the public using my and all other experiences. Society has to finally understand what they are putting us through. Even if we could make them grasp 1% of how hard it is to try to live a 'normal' life with this, it would be of enormous help for all of us.

Thank you all for sharing, keep them stories comin'! ;)

I know this was started ages ago, but happy to share. I've had dsps as long as can remember. At school I was always just one yawn away from falling sleep. In my office jobs, meetings were a time I had to be careful because I might fall asleep. At uni, lectures were pointless so I didn't bother. I've somehow managed to get decent qualifications and I do work normal hours, but i literally set 10 alarms on my phone and they each go off every few minutes. I snooze these for up to an hour most of the time. Since getting a job where people depended on me to be in on time (psychiatric hospital followed by teaching) I've managed to be late only once. However in that time I've felt that the dsps has been slowly but surely dragging me down. Luckily as a teacher i get long holidays. Within 3 days of holidays, i flip to my normal body clock and fall asleep at about 5 am and wake up early afternoon. These are the times i feel human, but guilty and i guess quite lonely. Very recently i got an official diagnosis after insisting on a referral. I've known about dsps for 5 years, but no doctor I've met has known about it up till the specialist. I've made one recent tweak to take my melatonin 4 hours before desired sleep. I'm not cured as such, but for two weekends running i have woken up spontaneously in the morning for the first time EVER in my adult life. I'm currently 35. It is possible to have dsps and live to society's expectations, but my God is it hard work! But i may have turned a corner...

Forgive any spellings and small case i but I'm on my mobile and tired (aren't we all?)

Well, not on mobile, but definitely tired! ;)

Thanks for sharing! I'm currently starting to pick up my personal research efforts again. If you have any other experiences to share or things to discuss, don't hold back!

I totally agree with your perception of the DSPS/D being a very slow and silent 'killer'. You might think you're coping with it, but physically and mentally you WILL break down when trying to keep in sync with society around you. It's just not possible for the most of us, even when treated.

I'm excited by your Melatonin remark. That's exactly what the latest research indicates. If melatonin might work, you have a better chance in taking it as a 'clock'-signal in low dosages earlier in the evening, than the usual large dose an hour or so before the desired bed time.

Very curious to hear if your recent 'positive results' last. I surely hope so for you. That few times in a year that you wake up early in the weekends is just MAGICAL for a DSPS patient, and reminds you to what life should be like! ;)

Keep positive and keep trying things! Thanks again.

Good to know about trying lower doses of melatonin early in the eve. I've only found sleep possible before 3:30 AM on "good days," when I take 20-30 mg of melatonin; otherwise, its that plus 2-3 doses of sleep herbs with California Poppy. I keep thinking I should just give into it. Maybe I'd feel a lot better if I stopped trying to force my body to do something it clearly is fighting!

I've just found this and realise the last post is a little dated now, but just wanted to briefly add my experience. Although I don't have a formal diagnosis, this is pretty much what I've always had. When at Uni the first couple of times, pulling all nighters was remarkably easy for me and I never really felt good getting up early for anything, because I wouldn't get to sleep for hours... When I was doing postgrad I would study all night, go to bed about 7am and have no trouble sleeping through the noisy day... However as soon as I had to take full time work I started to struggle, wide awake at 3am despite having been up since 7am, shattered during the day, and only catching up on sleep at weekends, it's no wonder of the the times I've had to work full time, I have totally hated it, felt tired all the time, and felt sleep deprived.

Now I work for myself in a job that sees most demand in the late afternoon and evening which really suits me. I've generally managed to get into a routine of going to sleep at 2-3am and getting up mid morning, which means I can at least maintain some kind of synch with society. Just lately though it's been creeping up to 4,5,6 am and have noticed this happening over the years, towards the end of summer - as the daylight hours grow shorter, I start experiencing sleep latency for longer and longer, at some point this usually resets itself but it's interesting.

There have been times when I've forgotten I have any kind of non-standard sleep pattern because I've managed to make my work fit my patterns and I suppose it can seem I'm just doing what suits the work, but recently have been unable to sleep until 7am as part of this seasonal shift and I guess that's what brought me back to check out Google again and find this!

I do more hours work than I ever would in a 9-5 job but always feel plenty of energy because I am sleeping, trying to force myself into 9-5 just never worked.

I'm not keen on the idea of this as a disorder, I think it's more an adaptation of some kind. When you think about it, people who stayed awake at night were probably more likely to survive nocturnal attacks by predators and perhaps many of us carry the genes of tribal guardians who kept watch over the others sleeping at night?

Thanks robbytherobot for sharing, although I've indeed abandoned my thread for the past year. I'm currently picking it up again, so keep me in mind when you want to share any other experiences!

Next to the usual 'your story sounds so familiar to me too..' you have an interesting point in the end that I do not hear very often and that I've stumbled upon lately too...
I'm referring to your 'tribal guardian' theory... some evolutionary reason for 'being this way' could indeed also be one of the options next to the already accepted 'our brain malfunctions somehow' reasoning.

Might be something in between those two either. Why? We probably can never backtrace. But advances in neuro-biology, understanding the human brain with all of its facets AND accepting that every person might need a custom medical approach WILL help us. The question is how long it will take... 5, 10, 20 years?

Thanks again for sharing! If you want to discuss anything else, feel free to post here or DM me. I'm always in to hearing others' experiences and discussing possible treatments and/or causes.

So I'm 27, and only heard about DSPS for the first time yesterday. I am avidly looking up whatever I can find on it, and found yours, and everyone else's stories on here. Almost everything people are saying is ringing so true with me, and it feels good to know this is actually a real thing, instead of me just being "lazy", as I have been told so many times. What really stood out to me was how people with DSPS do have regular sleep schedules, just different from what society says it should be. I get tired about the same time each night (Around 2 am), when left on my own wake up about the same time each morning (10 - 11am) and usually sleep fairly solidly. When I go to bed when I'm tired I can fall asleep in about 10 or 15 minutes. If I have to go to bed before I'm tired I'll lay awake for hours.

I remember a lot of it started when I was a kid. I would have trouble falling asleep. I never had a clock in my room, but I would lay awake and stare into the darkness for what seemed like ages until I could finally sleep. If left alone I'd wake up on my own at about 10ish, but I lived in a family full of morning people who'd always wake me up early, telling me to get out of bed, stop being lazy and sleeping the day away. I always tried to work my way into a later bedtime, but was always told no, as when I went to bed late I slept too late in the morning.

It didn't get any better as I got older. I remember at one point having to have 3 alarm clocks, one that I couldn't reach from my bed to turn it off, if I had to get out of bed any time before 10 or 11 am. There were mornings I was so tired I slept through all three, making me late to work.

I hate it when I have to work full time, most of the jobs I've had start somewhere between 6am - 9am, so I drag out of bed early, tired and cranky, then am pretty much non-functional for the first several hours of work. I can't just have a cup of coffee either, because I have a lot of anxiety issues and caffeine tends to trigger panic attacks in me. I can't just go to bed early either, about 1am is the earliest I can go to bed if I actually want to sleep. Otherwise I'll just lay in bed, wide awake, getting increasingly more frustrated that I can't sleep, until I hit that point where I can sleep. I have trouble keeping most jobs for longer then about 6 months because at that point I'm so chronically, miserably exhausted I just can't cope with going to work anymore and quit. I've fought back and forth with maybe that's just what part of being an adult is...living in a constant state of constant, mind-numbing exhaustion. That doesn't sound like any decent way to live your life though.

The absolute worst point in my life was the 6 months where I had a job that required me to wake up at 4:30am. My parents told me I'd get over it, I'd get used to it, stop complaining and being lazy and just suck it up. I made it through about 2 months where I was able to semi-function. After that though I was so tired I literally was not able to function properly. I'd get up for work, go to work, be tired and groggy all day. I'd get off and be back home about 2pm. At that point my whole body just ached and throbbed from being so tired I'd just crawl right back into bed. Sometimes I'd sleep, sometimes I'd just lay there in a semi-conscious daze. I'd wake up about 8:30pm, be awake for about half an hour, long enough to eat something, then back to bed where I'd do the same thing I'd done all afternoon until it was time to get back up and do it all over again. Whenever I was awake my whole body felt tired and heavy and achey. My head throbbed, my eyes felt like sandpaper, I was nauseous and could barely eat. I did this for 4 months until a swing shift position opened up and I practically begged on my knees for it. After about a week of going back to being able to sleep with what fit my body, I was right back to my happy, normal self.

There have been other times my mom would help me look for work and give me listings for jobs starting at things like 5:30am, to which I would tell her I can't do that, not if I want to function. She'd respond with something like "You *can* do it, you just *won't* do it." and usually follow that up with something like "I have to get up early, your father has to get up early, we don't like it either, but when you're an adult you can't just sleep all day.", leaving me feeling guilty and like I'm just some kind of lazy slacker. I've turned down really good jobs before because they start too early...that's not the kind of thing you tell people though, not if you don't want to be ridiculed for it.

Right now I only work outside of the house part time, a job starting at 8:30am...I hate my early mornings but it's only a couple days a week so I cope. Outside of that I avoid early morning anything like the plague. I worry about when I'll have to go back to work full time and go back to being exhausted constantly...seriously looking at my work-from-home options. I realize my schedule isn't off quite as severely as it could be, but it's still enough that I've definitely noticed it affecting the quality of my daily life when I'm not allowed to follow my own patterns.

Of course, I could look at working swing shifts, but the problem with that is all my friends and social circle all work normal 9-5 jobs and like to do things in the evenings. I'm in gaming groups a few nights a week, and a lot of times will just hang out with people for dinner or whatever. Even as a child I had few friends, and it's only been about the past year and a half that I've really had any sort of social circle or friends so I'm super reluctant to give that up. So I'm stuck with the question of do I work a job that lets me sleep, but makes me sacrifice 95% of my social life? Or do I keep the social life but sacrifice my needed sleep? It's a crappy decision to have to make.

Luckily my SO is also a night person and likes to sleep late as well, so he doesn't give me any crap about not getting up early. I don't think he's DSPS, but he is sympathetic to how hard early stuff is for me, so that does help.

Like I said, I'm just happy to have found all this info, and start to understand some of it. It's good to know I'm not alone, that I'm not just lazy.

If you're still interested in talking to people, or if any of the rest of you feel like talking, feel free to contact me at any time: lorikayfisher@gmail.com

Thanks for sharing TheLori!

Very recognizable indeed. As you see there's a clear pattern happening between us 'DSPS/D' sufferers. The 'just-hold-on-you'll-get-used-to-the-rhythm'-attitude that works for normal people makes us almost destroy ourselves, or at least jeopardize our physical health, mental sanity and general joy-of-life. Part of that is not accepting ourselves (re-inforced by stuck-up outside judgement including from medical experts we turn to for help) that we just CAN'T change it enough to experience life like the rest of the 'normal' people around us. The fact that we belong on one side of the bell-curve extremes regarding circadian rhythm is working against us.

I'm happy for you that you have found a SO that doesn't mind your abnormal rhythm. Slowly I'm seeming to get used to the idea that I probably should look more into like-minded (read: circadian-rhythm abnormals... ;)) too to find a potential SO for myself. So many times a beginning relationship goes so well until they seem to grasp that they can't lead a normal life with me... (as in doing the things everyone do at the hours everyone else does).

I will contact you surely to get some more details for my own 'research' somewhere in the next weeks. Keep reading these kind of stories on this forum! It really helps against any potential and unnecessary self-guilt and self-loathing people like us always build up during our lives. Understanding and accepting yourself is the first thing we all should work on. Trust your past experiences... we've all got enough after all these years to know what we do to ourselves or not... don't make anyone else make you think otherwise until we've got more insight in human neurology.

Thanks again and all the best!

We just found out that my husband has had DSPS and I myself am narcoleptic. I enjoyed reading this. It has really opened my eyes and I really realizing now how debilitating this can be and bringing to light how he can't seem to keep those pipeline and construction jobs he likes so much. He recently put up an add on FB for freelance mechanic work so that he can work his own hours and still make a significant amount of money. I don't know how anyone with this problem can get anywhere in life. I am curious to know if anyone has any tips for me and my husband. E-mail me at maegangilbert88@gmail.com.

Shout out from the U.S.!

Hi SleepyMomof2,

Thanks for sharing! I'm picking up this thread again, after having to go 'dark' the last year following my own personal low-point regarding DSPS/work/life. Luckily I've gotten through it with more 'clarity and wisdom' about what it means for me and my life, although with severe DSPS there is no good news for many of us yet.

Going on a freelance-path will do you husband much good if succesful! Trying to adhere to normal rhythm is what almost killed many of us in the past. If not physically, then surely emotionally. It's a catch-22 we simply cannot win. Building up a client-base is still hard and might take a while, but it seems the only way out except for the occasional existing-but-extremely-rare understanding boss you might encounter in normal jobs. Sadly in this society adhering to 'normal' and bottom-line-financials is more important to companies.

Hope he will be successful! It can still be hard working around your own personal limitations... (e.g. being available by phone/mail during early business hours) until society around us becomes more aware of our limitations. People should not only accept us, but even maybe admire us for keeping up that fight 24/7/365/life.

Keep hope! Our global scientific understanding of the biological-chemical workings of our brains is rapidly evolving, although you will not experience any of it in consumer-grade healthcare yet. In 5 or 10 years we will know EXACTLY what is bothering us and which chemical or structural imbalance is the culprit. Sadly, we have to keep fighting society and our own financial problems until then... that's why I still think there's benefit in getting in touch with other patients. It will be a sea of recognition and therefore less self-guilt, self-doubting and self-loathing.

Onwards! Good luck to both of you and a lot of happy quality family-time in the future!

I just recently learned about DSPS. for years i have always felt like an outcast, like there was something wrong with me and no one ever understood. reading this article and all of the reply's almost brought me to tears because now i understand I am not the only one. I have never held a stable job because i could not fall asleep and I always woke up late, and for the past 15 years could never understand why. because I was always in and out of work I have never been able to afford to go to the doctors to be diagnosed with DSPS. but after reading this and many other articles, wiki's and many other places I am absolutely certain have DSPS.

this realy has been an eye opener. now that I know, I dont know what to do. what is the next step? get a real diagnosis, find jobs that work to my advantage?
either way its time to pick up the pieces called my life and get things in order.

Hi crash0799, thanks for sharing!

Yes, I think we fellow-sufferers can only really understand each other completely. It seems that even our closest loved-ones who really try cannot even grasp 50% of the struggle it is for us and how it affects your life in any granular detail.

If you want, I can give you some thoughts on what you might be able to try. Sadly, everyone seems to respond quite uniquely to different treatmens, so it will be a trial-and-error process with no certainty of success. It this sounds like an idea you can DM me some of the things you already tried and we can start a more detailed conversation on there with some additional privacy for you and your specific ailments.

Hi veew

My name is Coral Capettini. I'd love to be part of your documentary (even though I know you posted this nearly a year ago). You can find me on Facebook if you're still looking for people.

I've had DSPS as long as I can remember. The first time I had my own alarm clock is when I was 8-years-old. That was the first time I realized how long it was taking me to sleep and how late I was going to sleep. How many 8-year-olds do you know who go to bed at 8pm and can't fall asleep til 2am? Well, now you know at least one. As I got older, it got worse. By high school, I was falling asleep at 5am and waking at 5:30 to catch the bus. I slept through every class and failed ninth grade with a 0.0% in every class I took. My last year of high school, I had detention every day because I was late. Once out of school, I tried working some day jobs to no avail. Luckily, my bosses switched me to night shifts instead of firing me, but that didn't work either. Apparently, 5pm is STILL too early for me. Even though I've had a name for my "problem" since 2001 and know that it is incurable, I tried day jobs again, hoping to conform to society. But, every single day job I've ever had I've been fired from for being late.

At my last full-time day job, I explained my condition during my interview. I told them that I would be late every day, but that I'm "reliably late"; meaning that I will be there at the same time every day. They accepted this and decided to hire me. They put up with my tardiness for 3 years (longer than any other employer), before letting me go because my being late was causing them to lose their biggest client. During those 3 years, I was never earlier than 1-hour late. I was usually 2 hours late. Up until they gave me the final warning. I managed to be on time for 2 days, but on the third day, my body clock overcame my willpower yet again and I was 15 minutes late... and that's when I was terminated.

After I lost that job, I realized there was no hope for me. I'd tried EVERYTHING. I'd seen sleep specialist, I tried every trick in the book--nothing worked. So I decided I needed to work for myself. As a Graphic Designer, it seemed easy enough to run a business from home. 2 years later, and I finally hit the most money I've ever made in one month--a whopping $900. My average income is only $200 per month, and I do this because it's more stable than having a day job where I don't even know if I will last 2 weeks.

I was also a single mom for 5 years, struggling to go to sleep, wake up, take my son to school in the morning, go to work, come home, and push through the desire to nap so I can get to sleep "on time". It never worked. Mornings usually involved me yelling obscenities at myself in the mirror as I rushed to get ready for work. I would take naps in the bathroom at work... I've been busted napping at work MANY times.

Freelancing has allowed me to dictate my own schedule since I deal with client through email-only. Amazingly, my #1 customer is also affected by DSPS. So we work together usually around 1-2am! I start my shift after my son goes to sleep (usually around 11pm; the peak of my productivity), and I finish up around 6am just before I have to wake my son up for school. I get him ready, send him off, and usually fall asleep around 8-10am. I have to pay extra money for him to be in aftercare just so I can get a full 8 hours of sleep since school gets out at 2pm. I don't have to pick him up from aftercare til 6pm, then we come home, do homework, have dinner, read/play, have a bath, then the work schedule repeats.

It's worked very well for me so far, except that on the weekends, I cannot just flip my schedule around. So the very important, quality time I should be spending with my 6-year-old is spent sleeping while he stays with his grandma, who is awake during the day and can supervise him.

The reason I think I may be a great addition to your documentary/book, is because I've recently taken an interest in homeschooling my son, which I plan to do starting this summer. My sleep disorder is my main worry since my son tends to have a daytime schedule. My husband, who also has DSPS, would not be able to cover for me during the day like other couples who homeschool that has at least one parent available during the day.

Please get in touch with me if you'd like to speak more! I've always liked telling people about DSPS because n one is aware of its existence and that people who are affected by it have a true disability.

Sorry CoralFang (and everybody else), have been of the radar for more than a year. (Still very ambitious about doing something to aid the DSPS community and general DSPS awareness in the long run. So keep the replies coming! ;))

CoralFang, thanks for your reply. Must say how I can totally relate to your 8-year old alarm clock example... ("..How many 8-year-olds do you know who go to bed at 8pm and can't fall asleep til 2am?..."

Indeed! I'm still baffled why medical staff is never taking these kind of personal experiences into account. It clearly should tell them something is way of from a neurological (/ bio-chemical) perspective. Let alone all the following experiences and anecdotal evidence during your complete life so far...

Must say I have enoooormous respect for people like you who not only have to keep themselves 'above water', but also take care of their families and children. Sadly, I can't imagine having children at the moment although I would love to. Let alone keeping a steady relationship with 'normal' people... ;) People like you should be applauded. Sadly society doesn't grasp how hard you have to fight yourself AND others perception around you every day, every time.

I completely agree with you on the awareness part and that is exactly why I started my story here on EP two years ago. It seems there has been no great advances either scientifically or socially. Although we all think to live in a 24h society, those with DSPS know this is still a future utopia.

As always I'm time pressed, trying to keep my health and company both up and running... but I will contact you via DM to get a little bit more details.

Thanks for posting despite the thread being seemingly abandoned. I'm going to pick things up again soon.

I got the same problem. I got an academic job with flexible hours, which really works for me. It enables me to get at least one 'work at home' day every week so I can sleep in that day, and use the day before to work until 6am (I do my best work at night; I usually get more work done that night than in the rest of the week), other days I start somewhere between 11 and 13. I hope I can stay in academics forever :)
But yes, occasionally there are meetings early in the morning, which I always have difficulty to attend. And people will not understand :S

I'm from Holland too.. Did you ever try to get diagnosed with DSPS?

Hi Anmaja, thanks for your reply. Your little story does sound familiar, I also can't imagine myself in a more rigid and responsible 'normal' work schedule. As you I try to adapt as far as possible and take the occasional hard-needed break to sleep in and try to refresh myself both physically as mentally.

I only start trying last year to get my condition diagnosed. (Whatever it actually might be... although DSPS is my 99,9% well-educated / researched and experimented guess) By reading all those stories the last years and experiencing people's reactions around me I didn't have a too positive outlook on a doctor's visit.

At a certain time it became so much of a struggle that I decided to go and spill my thoughts. Unfortunately my physician didn't want to send me to a sleep clinic (I need their indication to get such a thing insured), had no belief whatsoever, ignored my every 'cry for help' and totally ignored my physical and mental state. Also, adding your own opinion to the conversation (of course I waited with that until it was clear the conversation was not going anywhere...) does not help. Doctors don't like people who do their own thinking too...

Her advice: try forcing a normal schedule for a minimum of 6 months (!)...
My reply: Doctor, I feel like dropping dead if I do that for two weeks. (Which I have done more often myself..)
Her advice: meh, still try it first. See ya in 6! (Or 3 if you're reallly serious...)

Really would like to get things measured and/or looked at.

Curious what your experiences are with the dutch medical system and these kind of symptoms / complaints!

Hi everyone,

I'm sitting here at 12:30 at night, wide awake despite walking around like a zombie all day. I will get to sleep at around 6am. The internal sleep chemicals cut in at that time and as they flood my body, I drop off and sleep like a brick. The problem is, as you will all know, fitting in with the rest of the world. I have workmen arriving at 7am to install a roof for me. That means I will probably have to get up, so I will only get about 2 hours sleep, maximum. I can operate on that, but it isn't much fun, day after day.

I have had this affliction for about 30 years. I also suffer from chronic anxiety. I don't know if there is any link between the two.

The condition seems to become worse in hot weather for me. Summer is always a difficult time. In winter, I can sometimes get to sleep during the hours of darkness and life can be almost normal. I can often get around 4 hours of sleep in winter and that is enough to live a reasonably normal existance. Living in the tropics was a terrible experience.

Along with the delayed sleep problem, I sometimes binge eat at night. There seems to be some overlap with that problem.

Luckily, I run my own business and can do a lot of my work at night. Just the same, it is not easy as I employ people who sleep normal hours and have clients who work normal hours.

This affliction has destroyed the all relationships in my life. It is just about impossible to maintain a relationship with a person who sleeps normal hours.

I would be really interested to know if anyone else experiences the variation with temperature like I do. Thanks for reading. I'd be happy to hear from anyone who feels like a chat. I'm in Western Australia.

Hi Moz64,

Thanks for sharing! As with all comments your story, although different from any other, also contains lots of similarities with my own experiences! That's why I see so much benefit in us all sharing as much as we can on this board for self-understanding, knowing that you're not alone and that it is indeed NOT your own wrongdoings causing this. So thanks for that.

I could totally identify with the following: "I will get to sleep at around 6am. The internal sleep chemicals cut in at that time and as they flood my body, I drop off and sleep like a brick."

I think we're all struggling with semantics and how to explain to people what we feel and experience. The 'chemicals' you mention... I recognize EXACTLY what you mean... I can be tired all day and all night but completely not able to fall asleep. Until at about 6-ish AM a kind of haze or fog-like feeeling (that's how I always try to explain :)) starts flowing from the back of my head (/ neck) to the front. If I feel that I know I'm able to sleep. If I don't have that I know trying to sleep is only going to frustrate me.

Do you have any idea what that 'chemical' feeling might be in your case? I've tried taking additional melatonin (low and high doses up to 6 mg per night) and hoped that that would be the 'chemical' that my body was making way too late... but that didn't seem to help.

Regarding temperature: yes. I too have much more difficulties in the summer... but that might be something 'regular' people experience too, but of course as with anything its hard to tell what symptoms are specific to us and which are not. It does however remind me of the fact that I can feel my core body temperature rise and drop a lot at what for me seems like strange times. In a lot of academic research lately, people seem to have found a correlation between shifted core body temperature regulation and having DSPS. In some japanese studies they seem to use that as a way to diagnose (or indicate a likeliness of having) DSPS.

For inventory purposes... may I ask you for a more detailed (but still rough if you want) location in West-Australia? Trying to setup a list of users and their rough locations. Possibly to help people seeking contact in their vicinity or visits by myself when I'm around for business or holiday in the future. So for now, a rough location is all I need. When I want to contact you I will do that via this board again.

Cheers!

Hi veew. Thanks for your response.

Your comments about core temperature have led me to do a little research, since it appears to be one of the few things you can monitor yourself. I found that I can rent a high tech core temperature measuring system and I might do that later, but for now I am just measuring my oral temperature, which provides some indication. I am already finding some interesting results. The range if from 35.9 to 36.8 degrees. Low temperature corresponds with tiredness or just waking up and high temperatures with feeling active. At the moment, at 1:30 AM my temperature is 36.5 degrees and I am wide awake. An interesting thing is that my temperature dropped briefly after exertion.

I have been reading about light therapy and I tried that today when I woke up at around 8:30 AM. I sat out in the sun for half an hour and then tried to do some work. It was useless. I could not concentrate and had to go back to bed where I slept very soundly until midday. As an aside, as a male, there is a simple indicator of when I have slept very soundly.

I don't know what the chemical is that brings on the sleepy feeling, but I assume it is melatonin. I have tried taking melatonin to alter my sleep pattern without any success. I would love to be able to measure my melatonin levels from saliva samples, but I doubt that this will be possible. There has been research into real time melatonin sensors, but nothing on the market.

Regarding my location, you can seen that in my profile. I am in the very SW corner of Australia. It is a nice area and I live on 6 hectares surrounded by forest. I work from home.

Keep in touch.

Cheers

Hi moz,

Great idea of you to start some measuring yourself. Even with the slight differences between oral and core temperature it should enable you to see a distinct up and down pattern throughout the day.

If I understood all research papers correctly... 'normal' people have their highest sleep 'drive' when their temperature starts dropping and hits its lowest point (the 'nadir') during their most 'sleepy' point. (which is often during the beginning of their sleep)

Really curious what your measuring results were with respect to your own sleeping behavior. Would you maybe be willing to post them to me in a DM? I will guarantee you to keep the data as anonymous/private as possible.

Body core temperature regulation is one of the processes that is also regulated by our circadian rhythms, just like melatonin secretion, metabolism, etc... so it seems a pretty good indicator for your current circadian rhythm and thus all the associated other processes. Might give you a better feeling by being able to measure and conclude that biological processes have gone out-of-sync to the normal world around us and that it is definitely NOT something psychological.

If you have any other personal discoveries on your own... let me know! I'm very interested in these things.

All the best!

i'm leaving a post again to state that anyone who has dsps and can work is blessed,lucky,whatever..i'm forced to remain one of the unemployed and being unemployed with dsps is like being one of the walking .wish there were meeteups for this kind of thing like their are for other conditions.i'm curious to know if other people with dsps disorder are like myself regarding the christmas season.being awake all night during that time of the year is awesome to me.while most are deep in slumber,i'm wide awake and shopping and browsing the walmart anytime between midnight and 5am.so i'm enjoying the decorative aisles and their trees(always in the auto motive department?) and all the holidays stuff that's on display.sipping coffee in the middle of the night at a coffee shop that's all decorated up for the holidays.i must say that i don't mind having this condition so much around the holidays for those reasons.i'm curious too, to know about others leaving comments about this condition,do they have family or close friends that understand the condition to give support and patience./i feel fortunate to have my parents and 2 friends that are supportive. even though we don't hang out as close friends,the one friend is a minister,which helps a great deal and the other friend is diagnosed bipolar and definitely understands as he also has a sleep disorder which is comperable to mine regarding his sleep schedule.he's also unemployed and receives total disability.i'm wondering if others have had a difficult time finding support and understanding from others.

i meant to say "walking dead" in the above post at the end of the first paragraph.
only the word"walking" was published for some reason.oops..i also left 2 other posts here under the name gvvo..i guess i have two accounts here..not sure how that happened//

Hi Ratsnake,

Thanks a lot for sharing! As you might have seen on this board, your story is very recognizable! I totally share the 'walking dead' analogy you're making. That's how I feel most of the time and also what I see when looking in the mirror... (hinting at the pale skin and dark eyes from sleep deprivation..)

I am indeed lucky to be (barely) able to keep my head above the water running my own company for the past 8 years... but it is like fighting a war. I don't think I can do this for another couple of years in the current setup. Therefore my motivation to find my own solutions and initiative on this board to start crowd-sourcing our collective wisdom and experiences. We're all probably the best DSPS experts around, leaving the PHD's and Profs only guessing what we could have and where it could originate from.

I see from the reactions here how important it might be for all of us to see if there's a chance to meetup with some others, just to be able to talk with someone who simply understands and does not question you.

May I ask your rough whereabouts in Texas? Just to start keeping a log of users that might be interesting in meeting up others... If not, no problem too!

All the best!

Hi Veew and everyone else. I too have this life-destroying condition, seemingly at its most severe - my natural pattern, like many of you is 6am to 2pm. While at school and University , things were so bad it had got to the stage where I was losing consciousness at random ( passed out seconds after crossing a road at one point - I was very lucky not to be run over), or temporarily losing my sight and hearing. It was truly terrifying

I have been one of the lucky ones, however, in that I have found medication that works for me and helps me live a more normal life. The side effects, however, aren't great - it affects my concentration to the extent that I'm working in a call centre despite having a good degree (which I worked far harder for than most people I know). I'm earning minimum wage while I see those of similar academic ability rise through the ranks, earning enough to buy themselves houses, cars and a decent life for their kids.

i am considering coming off my meds and trying to build a life around my natural sleeping pattern but I'm really not sure how viable this is as an option. What kind of job can I do in the middle of the night that will let me earn enough to lead a non-miserable life?

I would be more than happy to participate in any research, not sure I'd want to appear on camera, but I'd consider any ideas - I'll PM you with my email address Veew.

Hi Veew and everyone else. I too have this life-destroying condition, seemingly at its most severe - my natural pattern, like many of you is 6am to 2pm. While at school and University , things were so bad it had got to the stage where I was losing consciousness at random ( passed out seconds after crossing a road at one point - I was very lucky not to be run over), or temporarily losing my sight and hearing. It was truly terrifying

I have been one of the lucky ones, however, in that I have found medication that works for me and helps me live a more normal life. The side effects, however, aren't great - it affects my concentration to the extent that I'm working in a call centre despite having a good degree (which I worked far harder for than most people I know). I'm earning minimum wage while I see those of similar academic ability rise through the ranks, earning enough to buy themselves houses, cars and a decent life for their kids.

i am considering coming off my meds and trying to build a life around my natural sleeping pattern but I'm really not sure how viable this is as an option. What kind of job can I do in the middle of the night that will let me earn enough to lead a non-miserable life?

I would be more than happy to participate in any research, not sure I'd want to appear on camera, but I'd consider any ideas - I'll PM you with my email address Veew.

Hi CherryberryUK,

Thanks for sharing! Might I ask which kind of medication seems to work for you and what the positive effect seems to be in your specific case? Really curious!

Also, might I ask you for a roughly more detailed location / region within the UK? I'm trying to roughly keep a map of users on this board, see who are possibly close to each other for an encounter or other contact and/or to try to meet myself in a later stage. (North/south/west/east or county would be enough if you're not to keen on giving away the city name..)

Thanks and all the best! (Still have to go through my PM inbox... sorry for the late replies...)

I'm on amitriptyline - it's been fantastic for me although there are some bad side effects.

I'm in Scotland. Central belt.

Hah... I just realized that your PM already contained the answer too... (Doh!) Thanks for your reply!

btw,to add to my last post,i find it impossible to meet others in my area who have this condition.thusly,being a loner is unavoidable.here's what i've found
1.most people are married,ina responsible relationship ,have kids and are living a family life and can't be bothered "hanging out " like a single person or like some preteen
2.those men that are single have girl friends and are in a relationship where as they can't irrespnsibally hang out as they're with their using any of their spare time being isolated to their girlfriends and hanging with other couples like themselves.girlfriends don't like their guys hanging with single men.i found hat out the hard way.my male cousin told me that he couldn't hang out like he used to and i found out later that his girlfriend 'made' him tell me that.unfortuantely this seems to be the norm today regarding any relationship.and number
3. those guys that are single with no girlfriend sooner than later find one and will be in that catagory i mentioned previously.
it's not likely a person is going to find someone else to hang with ,that has the availability to lollygag.the closes i've come to that is a bipolar meetup here in my area.i attended once-it was horrible.-long story though.suffice it to say,it's just impossible to meet people with dsps.seems like all the posts i read are from locations nowhere close by.(holland??that's a long drive from here..i'm in texas).

Hi gvvo,

please see my reply under your previous post. Regarding meeting up and location... I'm always eager to meet others and discuss these kinds of things in person.. but indeed The Netherlands and Texas US is a long way apart.

I do go abroad (also to the US) sometimes for business and/or pleasure... if I might think to be in the vicinity of Texas sometime I will definitely try to contact you via this board. I have to be honest though: small chance for the very near future...

I think bringing people with (possible) DSPS (or now in the US DSPD) together to share some thoughts in real life would be an enormous benefit to all. It seems there are no DSPS groups yet anywhere... We could maybe use this board to see if we can match-up some interested users for local meet-ups... how would that sound to you? Surely there should be more people in your vicinity... only a matter of time that someone finds this board too.

I saw you mentioned "bipolar." one of the things I've been wondering is whether others with DSPS have cycling moods like me. I don't fall into the BP II category exactly but my moods definitely cycle. In fact, that was more noticeable first before the sleep issues were (just considered myself a night owl).

i'm 58 years old and have had dsps since 9 years old.i was diagnosed in my early years as being bipolar,then later as having chronic anxieties.it's been recently that they finally learned it's been dsps disorder that's been causing my problems all these years.i've been collecting total disability (since 1981) because of the condition.i'm unemployable.it's severe.i'm in a situation right now wherein i have to stay awake for 24 hours in order to get my sleep schedule the way i want it.i was sleeping from 6am to 2pm for over 20 years and it worked well.these days however,my hours are eratic to say the least.seems like millions of times,i've had to sleep around the clock to speak to get my hours adjusted.and here i am again.sleep messed up again.couldn't get to bed at 6am cause i'd gone to walmart at 5am,bought a movie,got home and my head wouldn't let me sleep ..i just HAD to watch that movie.sound familiar? now my hours are all messed up from just that one time.it's 9:44am and i'm having to stay up till sometime in the a.m. now to go to bed and 'try' to get my prefered schedule back.sleeping from 6am to 2pm works great when i can do it.it's easiest to wrap my body around in regard to getting 'naturally sleepy'..if i take my sleep meds before i get sleepy,i'll only sleep 3 hours or so and that REALLY messes me up.having to wait til i'm sleepy to take them is a nightmare sometimes cause naturally i don't always get sleepy at the same time every day..this condition is a hate /love type thing.i've gotten so that i'm happy that i don't have to work for a living,as i see how difficult it is,having to sleep and be awake the same hours all the time and having to be focused and fully awake.i've gotten used to doing what i want and lollygagging.i love that word one of the critics in my past told me that i was just lazy and need to get my butt out looking for a job.he told me how i'm irresponsible and how like a teenager,i'm just lollygagging around and playing around like a preteen when i should be out being responsible but instead i'm stealing money from the pockets of society and using it to lollygag around all hours of the night...so now i enjoy that word.when people ask me "what i do" for a living..i lollygag .i hate this condition,but i also love being able to do what i like ,go where i like at any time,day or night.it's like living the lifestyle of a never ending teenager except ya don't win any friends.fact is,i'm pretty much a loner due to the condition.i could go on in detail about it all but not enough text space.trust me.

Hi Gvvo,

thanks for sharing! Your comment does indeed contain very familiar passages.

I also thought to show possible 'bi-polar disorder'-like tendencies.. but now I'm wondering for a while if that's not more of an effect of the DSPS on your emotional stability. As someone else on this board (I think it was Westward) stated: sleep deprivation is an effective method of torture and breaking people mentally... so this wouldn't be a very far-fetched theory.

The worst part that I totally recognize is the general disbelief around you (even from loved ones that DO care..) since they just can't comprehend or grasp...

If you want to go on into much more detail, I would really love to receive all the information you are willing to write down. If you'd rather not post it on this board I will gladly give you my email. The more information we all share, the more patterns could become apparent.

One thing that I might recognize in your writing style is possibly a 'chaotic mind' as I like to call it to my friends. I've also got enormous problems keeping things short and summarized, always feeling the need and urge to explain and elaborate in order to be of help or to order my own thoughts. Does that sound familiar to you?

Thanks and all the best!

I've just signed up for this forum and yours is the first story I've read. You've managed to describe just the way I've always felt and still feel growing up. I'd love to help with your project, since DSPS is not a well known or easy to be treated disorder, especially in The Netherlands. I am going to be tested very soon for all kinds of sleeping disorders but not DSPS, and I'm pretty sure the sleepingcentre where I'm going to be tested doesn't even know about this disorder. I hope DSPS will soon be known better and easier to be treated. Groetjes uit Nederland!

Hi NinaMK,

Thank you for your reply! Really curious to which sleeping center you've been forwarded by your GP. I've found a center in which they have started acknowledging and further researching DSPS and that is 'PsyQ'.. (especially their facility in Eindhoven) maybe something to look up if your current center's research doesn't result in anything effective. Don't think they have any effective treatment yet, but diagnosis might be a very welcome first step!

Also, curious about the kind of tests you're undertaking now!

I don't want to scare you off or something, but if you want to talk sometime in real life about this... I would really look forward to finally meeting someone with the same thing to share some thoughts without the confines of a keyboard... :) So let me know if you would like that too. If not, also no problem!

All the best!

veew, Thank you so much for your story. I just got diagnosed with DSPS yesterday. I'm a 42 year old man living in Northern California. I've struggled with this for my entire life. My mother tells me that this has been my issue since I was a baby. My father had it too. As a teen I'd often get out of bed at 1am after being in bed since my bed time of 9pm (21h00) only to find my dad up and working or watching bad movies. He always seemed to understand that I couldn't sleep. Sometimes he'd let me watch bad movies with him until 3am when I'd finally feel tired enough to go to bed and fall asleep. He had the same sleep pattern as me. DSPS was unknown then and others would always make me believe that I was lazy, unmotivated, unorganized, and undisciplined. I resonate with your story. I'll write my own experience soon and I'll contact you by pm because I'm interested in your project. Thank you.

Hi Simchaland,

Thanks for your kind words! It's great to get so much response and recognition of people that (finally!!!) know exactly how I feel most of the time and how much influence that has on one's life.

I'm also on a current research path leading to genetical inheritance, which seems to be pointing at some abnormalities the human period 3 / CLOCK genes, affecting our biological clock and thus hormone production (melatonin), body core temperature regulation, etc...

In my family I can't find anyone with exactly the same thing. It does however interest me that in the male line of my family there are lots of commonalitities as RLS (Restless Legs Syndrome) for example and AD(H)D symptoms, which could all be different outcomes of a same common genetic origin if I understand the scientific matter correctly.

Really curious about the type of diagnosis and treatments you've experienced in the past and how doctors looked at your problem! Please do elaborate if you want. (or put it in a DM if you don't want to put such info here on the board...)

If you have any kind of thing (symptoms, experiences, thoughts) that might be of interest, please post it here on this board!

Thanks and all the best!

You have described my life, feelings, self doubt and self discovery perfectly! Thanks for your beautiful story and sharing yourself! I too have been thinking of doing a project on sleep disorders here in the states. I will message you. Thanks again.

Thank for your kind reply, sleepyvixen!

It's amazing how much almost each story on this forum is spot-on in describing the accompanying emotions and social issues. Very reassuring and comforting to know that there are more of us in this world!

Also, thanks for posting that website link to this site. I think it is a good idea for posters to start collecting materials and link and use this site as a central repository for now. Hopefully we can use a bit of that 'wisdom of the crowd' magic...! ;)

Cheers!

Sure. Message me. I would love to talk about this topic.

Hi Westward,

Sorry for my late reply. I'm also juggling like crazy trying to keep every aspect of my life (my own business, my social/love life, physical/mental health) within reasonable bounds, so although this project will keep being important to me I sometimes have to step away for a while until I have some energy and time to pick it up again. Like now... :)

I've read your story and you're really hitting home with some of your descriptions, like:

"Somehow I have managed to have long term girlfriends where we actually lived together but I spent more time watching them sleep then actually interacting with them. It makes you feel like an outsider in so many ways."

Almost if you describe exactly how I think about myself during these situations.

"I lived the life of a rock star to some degree. Late night parties, heavy drinking some recreational drug use. That was the only time in my life where people could understand my sleeping the day away but led them to assume that I was just a lazy party guy. In reality, I had just found a world where my sleeping patterns allowed me to finally fit in. "

That was my problem too for a long time. It's a bit the chicken-or-the-egg what seems to bite us in our butts when trying to explain to family, friends and even doctors. They always seem to think the other way round... that you must do something to cause it yourself, instead of just adapting to your normal internal 'flaw'...

Like you, getting older and becoming more aware of additional health risks associated with long-term sleep deprivation only makes me more motivated to crowd-source as much out of this community as possible... especially since the medical world still seems to have a significant bias and no real effective plans for diagnosis and/or treatment.

Could you maybe elaborate on the kind of diagnosis and or treatments you've had in the past? What were your experiences with them? Really curious if we can all find some patterns that could show us which treatments are unnecessary torture or not...

I would be more than willing to share my story. I have been bouncing that idea around as well. I think there needs to be more awareness for this disorder because it is such a pain in the *** to deal with and most people don't understand that it is not our fault that we can't sleep until very late or early, rather, in the morning. I have been through a lot with my father because of this mostly because he refuses to believe that it is not my choice. This is a serious problem and people need to be aware of it. So here is my email hotjellydoughnut@yahoo.com.

Thanks for your reply! Just so you know: I'm very busy at the moment with some work deadlines but will come back to you with more information and/or questions. I've noted your contact information!

I totally agree with you that there's a lot of road to cover for all of us on the awareness level. Target audience being the medical/scientific world, the general public and, as you state sadly enough, even our loved ones who are closest to us. At the same time I can imagine their disbelief though... but it doesn't make it hurt less...

Hope your father will eventually see the seriousness of your problems as time passes!

Hang tight and take care! If you have any questions or just want to get something of your chest just send me a DM.

Hi there veew, it's been some time since I last visited this site.. I can not add much to your story or give you much advice since I don't have any. I also believe that one thing might work for one person and be completely useless for the other. I seem to be at a point in my life when the DSPS has weakened its grip on me. However, I have no idea what caused that, but I'm grateful for it :) <br />
<br />
Anyway, I like what you're trying to do here. I posted my story a while ago and wanted to get in contact with other ppl with similar experiences as well, but without much success. I'll be sending you my contact details in a PM (if PM works on this site?) <br />
<br />
Take care!

Thanks for your DM! I'll read into your (older) story when I can. Don't worry about not having any advice... I think it's mostly the patterns in personal experiences that counts in the first stages of my project research!