Sleep ' hygiene' and 'black time.'

Living by the clock was very much a Victorian change to our society and was part of industrialisation. It wasn't like that before so could well not be like that again. Hopefully, as we move into a new phase, what we will measure is necessary tasks not the time we appear to be doing them.

Generally speaking I need a lot of sleep but not so that it affects my day to day life. However every so often I suffer from an acute attack of hypersomnia. These attacks come out of the blue with about an hour warning. Warning signs are tingling lips, slowing down etc. I call it 'shut down' because that's what it feels like. I then sleep for 22+ hours a day for the next two or three days. DH makes sure I drink every few hours though tbh I don't remember him doing it most of the time. I hate needing so much sleep and resent losing days of my life to shut downs.

My grandchildren all have ASD's and are deficient in melatonin, the sleep hormone. They don't usually go to bed until somewhere between 23:30 and 01:30. Then, consequently, they sleep until about 11:00 the following morning. It works for them as my DD educates them at home. They rent cottages or go camping for holidays so that they don't have to be up for breakfast. The strange hours they keep work well for them, so I don't worry. When they come for a sleepover, I have to be prepared to go to bed late.

Coolgran, that's the mystery isn't it. DS has just come off all medication so that should help us to know in time. As you say - proper sleeps, in bed for so many hours and waking still feeling he needs more, not just catnaps. I feel my DS has lost so many years. I hope it is meds based because he is going to have his meds tweaked. And he hasn't always been like this.

Imperfect27 My ex husband had a personality disorder and was often in hospital. When he was not in hospital he was at home with me.
Just to say - with regard to sleep - that he could and did sleep up to 22 hours in the 24 hour day. This was proper sleep, into bed, not just napping in a chair.
When he was out of bed he would have taken a trip to his parents' house which took 15 minutes, spend about 10 minutes with them, and then back home again... and straight back to bed. He did this trip probably about 3 times daily.
He slept almost constantly. Would have got up to eat a meal (wearing his dressing gown) and back to bed.
I could never figure how much of this was his illness, or was the medication.

Imperfect
All I can say is onwards and upwards.

One of the biggest hurdles is making the 'Right People' listen to what the nearest and dearest are saying.
And then things can be moved forward.

It would appear that your son's Psychiatrist has some understanding and in turn is helping you not to fret too much regarding sleep patterns.

Wishing you and your son peace and understanding xx

We truly are making progress. I have just been surprised that no-one seems to be giving this any real attention. BUT, we are in a much better place this week than we were 2 weeks ago. I feel like he has come back to us so onwards and upwards.

Oh dear Imperfect, it must be so difficult. He obviously has a multiplicity of problems making it hard to work out how they all affect one another. My D.S. with his digestive problems often replaces a meal with chocolate. Amazingly it is one of the few things he can eat! Hope they can work out the best course of a action soon for your son.

It does sound as if the medication may be at least part of the underlying problem but I presume this is known by your son's physicians.

I do hope you are able to pursue and achieve support from your son's medical team. They should be as concerned as you are about the lack of calories.

Baggs we recognise it is difficult and can fully understand why there is a rigid regime in place because it would be open to abuse, We just felt we were not heard for a time when we tried to point out that he was not purposefully abusing the system. He has a definite sleep problem.

Cressida, the sleep diary is a very interesting thought. He does tend to sleep for about 15 hours and is sometimes nigh-on nocturnal. We also think some of his other problems may be made worse by serotonin deficiency. But of course, we are not doctors ...

Yes FarNorth - we do think it is an essential part of his improved well-being that he actually has bought body fuel! We have bought fruit and breakfast biscuits and the like ... trying to keep it wholesome, but no access to a fridge.

Because he has had some violent outbursts the staff won't try to wake him - they knock and then leave him to it when they don't get a response. I have tried phoning him, but he is always very 'doped' out and if he sets an alarm and leaves the phone out of reach, he simply crawls back because in his own words, he really isn't able to bring himself round properly.

Thanks all for the words of support. It is something we are persuing with his designated team.

Imperfect27 is the ward keeping a record of his sleep times in case the hypersomnia is caused by his medication.

If it's a circadian rhythm problem then light therapy could help.

My daughter has M.E and for many years had a non-24 sleep wake cycle and was virtually housebound. By keeping a sleep diary we discovered that her 'day' was around 25 hours. Her sleep time was around an hour later each day. Meal times were difficult but we found a way of coping so that she had 3 meals during her wake time. Once we'd worked out the pattern it became easier to plan ahead.

About 4 years ago she was given a Lumie Bodyclock alarm that a friend had won and didn't want. The clock simulates dawn and dusk and has made a huge difference to her life. It has regulated her sleep pattern and her health has improved to the stage where she has already completed a level 2 teaching assistant qualification and is now on the Level 3 course & is applying for jobs.

There's an immediate need for your DS to get enough to eat, imperfect27, and if the hospital can't cope it'll have to be down to you.
Obviously, they hope to get him onto a more "normal" timetable but I don't think depriving him of food will help with that.

Working in elderly care, we had a lady who liked to sleep till nearly noon. We believed this couldn't have been her usual habit as she was from a farming family.
It turned out that the family did, indeed, always sleep late and adjusted their farm work to allow for that.

Surely in the distant past we went to sleep when it got dark and woke when it got light?

I think so too, BR. Must've been hellish just getting enough to eat during winter in more northern places with little daylight.

Thanks, imp. I think I understand a bit more now. It does seem bad that he isn't (or wasn't) getting enough to eat. Do you think that if his sleeping times could be accommodated by providing his meals while he is awake that that would help?
I can understand a hospital, especially if staff are already strapped for time, having a problem with organising that though.

The timed day only came in with the Industrial Revolution when the workers all had to arrive at the mill/factory at the same time and have their working day timed. Time across the country wasn't regulated until the coming of the railways so Bristol time was different to London time etc. We didn't evolve to a regulated day so it's not surprising that some of us can't fit into it. I sleep far more in winter than I do in summer as my body reacts the amount of daylight.

I think routine is a kind of safety net for some people.
Years ago in an elderly persons home, I remember one of the carers crying when told that "her people" would be given the choice of eating their Christmas dinner in the main lounge, just for a change.

I can please myself, I generally get up around 8 am-ish, get things ready for breakfast, lunch and tea, then wash and dress. I quite like having a routine of sorts but don't stick to it slavishly. I go to bed when I'm tired.
In-laws always liked their routines rigidly, used to ask me repeatedly what time I got up, ate, went to bed etc as if it was of utmost importance.
Years ago they went to stay with old school-friends who did as they pleased. The children (my DH and his brother) had a whale of a time with lots of freedom to go paddling, play in the fields, go fishing etc, come back to the house when they got hungry but MIL/FIL were absolutely horrified - and talked about it endlessly on their return home. If murder had taken place they couldn't have been more shocked.

Surely in the distant past we went to sleep when it got dark and woke when it got light?

My DS also has nocturnal sleep patterns but manages to fit them into a working day in the week though we rarely see him in daylight at the weekend.

It is generally workable. However, much research has been done on sleep patterns and one cannot ignore the deleterious effect irregular or nocturnal sleep patterns have on health. Night workers are prone to serious illnesses and extra weight is difficult to keep off if you do not follow a 'normal' (western) day's pattern.

we've never lived by the clock,we eat when we want to or when we have time to,we go to bed when we're tired .Nowadays when we dont have to be IN work for a certain time we sleep or lie in until 9 or 10am regularly.We did find it very dfficult when we went on holiday with friends who HAD to eat lunch at 12 and dinner at 5.30 and be in bed for 10.....doesn't work for us so we haven't repeated the holiday .

Currently I am on my own at home so can please myself and definitely do not live by the clock in the house. I go to bed late and get up late. I eat when I fancy, and what I fancy at the time. I love not being ruled by the 'conventions' of life. When I am out, I have time to be polite - I have time to be polite to other drivers; I have time to let the occasional shopper go before me in the queue. I love that life is no longer clock watching and time consuming! I, of course, have appointments to keep, and know that other things are ruled by the clock, but I love the freedom of my own time.

Thnaks again Jane. Baggs he is on an acute mental health ward at present and we have been reporting his poor sleep since day 1, but this seems the one thing that no-one is really picking up at the moment. Maybe it is just part and parcel of other things and will regulate back again in time, but to me it is all of a piece with poor nutrition - he had 4 meals in 4 day.s when he started on the ward because he just slept through and they were rigid about routines and thought he was just electing not to get up. We kept saying 'he is here for a meds review,' among other things! Now they do offer him a sandwich and we have taken in food that he can keep in his locker. We have done all the 'thinking' and 'action' on good sleep hygiene already. It may be connected to his personality disorder - just that no-one seems to be offering any acknowledgement or solutions yet, but it is early days in his assessment. I just get upset when he misses so many meals and then is so 'exhausted'.

Has your DS had the hyper-somnia condition for long, imp? Do the medics know what has caused it? Will he 'recover' from it?

What I'm thinking is that if it's an illness then the sleeping from 3am to 2pm is just a symptom of the illness. It think you just have to accept symptoms.

My understanding (misunderstanding?) might, I realise, be way out.

Sadly the regulated day is how things have to work in society today.
We can't just sleep and work when we want or chaos would ensue, but the principle is an ideal situation ,just not practical.