There is a new worldwide sleep study trying to assess how lack of sleep affects the brain and our ability to reason and deal with things. Interestingly for us they are taking into account the number of concussions a person has suffered previously.
After registration, they ask you to undertake a few cognitive tests which are quite interesting. It looks like they send you an email a day requesting your sleep patterns.
Well worth joining in a helping a good cause. The link to join is at the start of the web page
Thanks for posting this sospan - it's fascinating isn't it? I was so excited. I was reading a post a few minutes ago - it comes up so often on here and seems to be one of the underlying things that keeps being missed and attributed to other things (like depression).
I love the really savvy public health messages that use simple illustrations to show how lack of or poor quality sleep can have a similar effect to alcohol in terms of how it affects us...
Mother nature has a weird sense of humour sometimes - having a head injury is very much like being drunk - slurred speech, no coordination, poor judgement but gives us the morning after hangover without giving us any of the fun ....
One of things I discovered many years is that sleep has several other functions apart from rest. It allows short term memory to be committed to our longer term memories and because we are not processing so much while we are asleep neuro pathway development can take place much easier.
The whole human body is marvel machine and I am continually surprised how it functions
Well put. Yup...on one level alcohol is a head injury. There are really interesting connected developments regarding neurodegenerative changes (as in dementia).
A few things strike me about this. I've tried to 'relearn' my sleep habits and hygiene at several points.
Due to lack of beds I ended up on a loud and chaotic ward being very perplexed as I was witnessing some quite unusual behaviour. TV blaring some days for fourteen hours straight. Patients being violent and stealing things from each other. Cue my trusty earplugs and headphones. Some nurses eventually 'admitted' (!) that I was with people who had drug and alcohol addictions. It was eye-opening and heart breaking that most patients and staff - at least publicly - appeared lost or were given little support. I kept wondering about the wider issues about why all these people with severely impaired abilities weren't being treated for that aspect, with prevention and connected services, versus the purely interventionist and isolated medical acute care. There was a lot of blame and denial - one other patient was spoken to (in effect given her diagnosis) using words she clearly couldn't understand. She didn't get it. We got chatting after the doctor left as she just sat there looking stunned then burst into tears. She was so disorientated. She could barely string a sentence together and hadn't understood what the highly technical words the abrupt and clearly frustrated doctor, in a very brief consultation had hurriedly delivered. Her family later tried to piece together the jumble she was able to tell them when they visited, but she was sent home, none of them much the wiser. Only to predictably return a few days later in an even worse state and almost unable to walk, with increasingly confused and upset relatives. She would weep to herself at night and revealed her son had died a few years before but had never really talked about it, or her drinking to cope. I found this all out, as a stranger, in a fifteen minute chat. One other patient had an addiction support worker visit daily. She had a few close friends actively involved and support; her stay in hospital was briefer and her outcomes were a world away.
I was luckily transferred to a stroke unit (same hospital, again no neuro beds) and it was so different. Very different patients, but a real focus on rehabilitation and gentle encouragement. And a quiet and calm - healing - atmosphere.
I wish so much about this was different, especially allowing sufficient rest and sleep being viewed more importantly within health services, for staff as well as patients.
One of the problems with the NHS at the moment is that we treat symptoms not causes and that people become part of the production line - fix 'em up, ship 'em out. This goes from a GP through AE and hospitals.
One of my favourite hobby horses for this is diabetes (type 2) and obesity. GP's will happily prescribe diets and pills but will never ask - "so why do you eat what you do ?" since a lot of dietary issues are more psychological than physical and a chat could uncover the reasons behind the behaviour.
However, head injuries are mainly treated as an opposite of this - because we can't see the damage everything must be psychological !
At least you managed to find one of the few places to get rehab in the UK. So lucky to have a found a place, most people on here once they are stable get released to home care and then have to find rehab for themselves
I hope we change it before it breaks completely - it's getting very hard to think it's not deliberate policy. I was lucky to find a bed, yes. It wasn't a rehabilitation place as such - just the attitude of that ward locally - I understand stroke gets different funding, research and therefore treatment compared to other brain events. There's a 'hub' system regionally that manages services and a few of the hospitals talk to each other. There were specialist nurses and physios too. (I was once shifted through five wards in a ten day stay so appreciated the consistency.)
Same for me - once I was stable I was discharged to 'home care' too and ended up being taken back in after three days when things went very wrong very quickly. That was three years ago and I've cobbled together my treatment since as so many here have. GP refused to keep in regular contact, they have then been contacted at a last resort by third parties who did realise their duty of care (friends/Red Cross/Headway/Community Matron...), they've been obliged to call ambulances and the paramedics have been super but angry and they're usually very angry in hospital too - that we're all being tipped towards that part of the NHS.
Poor coordination, falling through 'gaps' and 'loss of data' is frankly relentless. My local hospital have just sent me a letter informing me their 'overseas charging team' need me to get in touch. Apparently I have fallen off one part of their 'system' in changing GPs. I was born in the hospital, haven't lived abroad, so am not impressed! Wonder if George Orwell had any suggestions like putting my birth certificate and British passport details across my forehead, or perhaps I should Batman style project them onto the roof of said hospital...
This is a major issue for me, sospan , (The impacts of poor sleep, not the fact that you're highlighting the study.) I've been awake since just before 4am, and that's something of a lie-in for me.
I'd always been an 'early riser' before, but, back in the pre-BI days, it tended to be about 5am, now, 1.30am isn't unusual. That wasn't so much of an issue when I was living alone, and off work sick, but my son is back from Uni now, and I'm on Universal Credit, awaiting the outcome of my PIP assessment, and having to evidence 'actively seeking employment', albeit on reduced hours. (My work-coach didn't initially grasp the significance of my BI, and only reduced my 'hours' after a tearful exchange, when I showed her some of my hospital-file.)
The knock-on of the early starts is vast, by the time 'most' people sit at their desks and fire up their computers, I've usually been awake for so long that my head thinks it's lunch-time, I'm looking for part-time work, ideally mornings, but 'the system' is likely to start imposing the dreaded 'sanctions', due to me not applying for full-time positions. Part of my previous job was risk-assessment, and my assessment of me is that I can't guarantee I can function safely late-afternoon, and I KNOW I can't function safely in the evening. My son is becoming frustrated with having to repeat "I told you that yesterday.", and not grasping that anything he tells me after about 6pm probably won't be retained. (The work-around is "Write it on the fridge.", there's a sheet of paper on the side of the fridge as a reminder-board, but he's only been back 3 weeks, and remembers me being more functional than this before he left.)
(Sitting here, wide awake, and not logging onto the work-search sites yet, because they don't update until 'normal' office hours...)
There's the irritability, too, and I need to be really careful with that. The boy's sleep cycle is different to mine, he doesn't usually rouse from his pit until about 10am, then he'll get his 'second wind' after lunch-time, and start showing he things, or asking me where things are. I SERIOUSLY need to mind my 'stop acting like your Dad' first impulse, when I'm trying to complete job-applications, and he'll randomly ask me if we have any glue/string/particular type of tea.
When I first came home from hospital, over two years ago now, I thought that the early wake-ups were trained-behaviour, one of my medication doses was 3am. Then, I thought it might be the sensory overload of the ex coming to bed at 2 or 3am. (Snoring, grunting, flailing blanket-snatcher, with atrocious personal hygiene, and an insistence on bringing the bloody DOG to bed with him, one of many reasons he's now 'the ex'.) I fixed the ex-issue, bought a new bed, and maintained 'good sleep hygiene', but, even over a year since re-claiming my sleeping-space, I'm still awake before the birds.
It's probably not classic insomnia, I have no problem 'going' to sleep, it's just that once I wake up, that's it, I'm awake. Back to the 'toddler brain' analogy I'm fond of, one of the girls at my old work had a 2-year-old, and he'd wake up at daft o'clock, demanding she play with him. My 'toddler brain' just WILL NOT go back to sleep, there's nothing 'wrong', I'm not fretful, or hungry/thirsty/hot/cold/in need of bodily functions, I'm just wide awake. Chamomile tea, or hot milk don't work, because I need to mind I don't burn myself, my hyperaccuisis rules out 'soothing music, or whale-song', reading a chapter of a book either leads to me binge-reading until daylight, or getting the twitchy-eye thing, where the black print 'swims' on the white paper.
Anyhow, I'd better get on with evidencing that I've read any work-related emails that came in after 6pm yesterday. Risk-assessment on that is NOT to respond after 6pm, because I can't guarantee an appropriate, un-garbled response... both sides of my bed are the 'wrong side' these days.
I am the same although I am not full of energy, I never feel tired, never yawn etc. Although scarily when sitting, I can "shut down" randomly like someone pulled the plug. It may be for seconds or minutes and it can happen even if I am holding something. Last night I went to bed at about 1:30 and I was up at 7:30 and have been awake between these times as well
Like yourself I had to undertake lots of risk assessments as part of my work and if I sat opposite myself in an interview I wouldn't employ me. Whilst I have a huge number of qualifications and experience I would be too much of a risk due to my symptoms.
When I explain this to people the first thing they say is that it would be discriminatory. However, if I had two candidates with the same experience and one had symptoms like I have - poor concentration, issues with comprehension and planning, fatigue and randomly falling asleep, mobility issues, the potential of extended sick days etc. I personally wouldn't take the risk of employing somebody like me.
Guaranteed somebody will read this and raise more than an eyebrow at such a statement but people have to realise that businesses are not benevolent organisations and that staff must contribute more than they cost to employ - at the moment I am not
It's difficult to balance. I'm 'over-qualified' for most of the positions I'm applying for, but I fully agree with you on the risk assessment angle. I've spent the last couple of years embedding work-around strategies, so most people I came into contact with didn't realise 'how' disabled I was. It was never a deliberate attempt to conceal anything, it just seemed easier for me to leave rooms that were too loud/bright on some pretext, than to challenge colleagues who thought that volume/lighting was OK. I have a range of muscle tics and tremors now, since the second round of surgery, and developed a tendency to lean on walls or furniture when I was wobbly. Nobody noticed.
The sleep-thing is massively impactive, I don't have 'absences' like you do, not full-on shut-downs, but I know it impacts on my concentration at times. The work-around, when I was at work, was to get up and move around if I could feel myself getting 'vague', that's some boring old training I did on stimulating concentration in the kids I worked with coming back into play. Stretching, and opening the airways, 'crossing the centre line', and physical activity to increase blood-flow to the brain are all well and good if said brain is fully functional, sometimes ours aren't. (Unspeakable urges to launch colleagues out of the window when they suggested 'go to bed earlier', or 'have another coffee'...)
Sorry to hop on here - but it's very helpful to read. Replies are all helpfully appearing out of order.
I got very worried at being thought of as 'lazy' when I lean or subtly sit down to rest/leave a room. When I remember to notice noone is noticing, it's very freeing. The disability question is interesting - I've found real support from people writing and speaking about how they have to, or feel a pressure to 'perform' (or not) their disability. It takes confidence to do though. When some venues and people (and service providers) take it and me seriously I try not to feel oddly guilty.
On a side note, sending you all the very best as you work through evidencing your efforts as you're waiting for PIP. I hope it comes soon. It's bizarre how anyone can be over-qualified. (Avoiding going bananas on occasions like when I was asked to go to a 'training centre', and ended up teaching the 'provider' how to set the programme up for a new user, log on to said programme to evidence I could read an analog clock face (????), completing this task too early, then not being allowed to leave (computer said no) or move position (computer said no), so noodling around and having to download their printers for them, so we could leave, having 'proved' I'd been and 'engaged'...is still something I can't quite believe...).
You can quite rightfully note how you are refreshing and upskilling (eurgh) your IT, time management and and other transferable skills, in dealing with the very process itself. And dealing with the stress with aplomb
...what a reply...I nearly covered my keyboard in coffee with that image and a dash of chamomile with faint whale song whining in the background. Binge reading - ditto. This thread has got me realising a lot - I would binge read a topic for work - throw in some risk assessment - and do X or Y with information. I loved it and saying goodbye to that ability or trying to tweak it is odd.
Great tips - well done on the work arounds, impulse control and issue-fixing!!?
Hello @0101 Impulse-control was the hardest one to grasp. Not the 'hardest' one, but the most potentially dangerous one. My work-around, which hasn't failed me yet (Apart from when I get an itch to say something utterly absurd, and end up writing it on a bit of paper, wouldn't do to shout "Dog Yoghurt!" in a meeting, would it?) 'Step back.' As a Learning Mentor with challenging adolescents, I used 'Step back' as a tactic. The first wave of 'step back' can work equally well with challenging, or obsessive-type behaviours, and, as long as the kids (or me, in this instance) had the initial 'niggle' that the behaviour might not be appropriate, it worked most of the time.
*Impulse*
(Stop, step back.)
(What will happen if I do/don't? What are the consequences?)
I'm not saying it would work for touching wet paint, to check the sign isn't lying, or poking a jelly to check if it's set, but most of the time I catch my LUDICROUS niggles before they escape in public. I worked an extra layer into it for me, that I didn't have to use with the students, especially pointed towards some of my less-than-pleasant potential verbal blurts. "Is it reasonable, proportionate, and necessary?" That's the qualifier we were trained on for instances involving physical intervention with students, nobody ever wanted the reams of paperwork that came after a physical intervention, so the mantra stuck with us, and we'd only go 'hands on' in circumstances were we could justify all three elements. It wasn't 'reasonable, proportionate, or necessary' to punch the woman at the next desk for chewing with her mouth open, or wearing enough perfume to choke a goat, so I didn't.
*Dog Yoghurt* henceforth my new mantra. For everything.
I dunno - often had to wake up people (who did safety critical jobs) in meetings so would sometimes put a spelling error or two in, just to check if anyone had read the papers beforehand...and think a brief shout out for canine dairy products may have been a real ice breaker/discussion point...
Making me laugh this much was reasonable (glad I put my drink back down), but think I'm laughing disproportionately loudly. Then again it's probably doing me so much good it's entirely necessary
On a serious note thank you for 'step back'. I may put this down as online CPD as I am on record discussing the thorny legal concept of reasonable practicability...
I was the QUEEN of 'checking people are paying attention', I could generally tell by the coffee-wastage who was awake. That's not even BI-related, in my previous job, a lifetime ago, I had to read a very long, very boring credit-search script. Quite often used to insert 'blimey, look at the size of that spider!' about half-way through... I'm a horror.
I can't add anything coherent to 'reasonable practicability', but one of my mentoring strategies was "If I can't do it, is it an issue?"
(If *I* can't do it, should someone else be?)
(If "can't" is the issue, is it skill, or will?)
(If I can't do "it", is there something else I can do instead?)
(If 'it' is the issue, is there another alternative?)
I'm a semi-senient mind-bomb, evidencing the fact that I've been up since 4am, and am only partly effective after 6pm.
Dog-yoghurt was the least offensive of the mind-blurts I could think of...
Interesting isn't ? You post a topic on a very narrow subject and the discussions strike a chord with people in different ways, bringing up new and diverse opinions and taking the conversation to new levels.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Sleep trouble!! Help?
Now Sleep Hallucinations!
Music for the recovering brain
Headaches and sleep issues
