To fake having a disease, just because what I do actually suffer from is unheard of-even with doctors?

[XoticEngram]

I suffer from a sleep disorder which in itself isn't/shouldn't be a big deal. In the grand scheme of things compared to cancer, or some progressively deteriorating mental condition I am lucky.
However it does limit the work that I can do. Basically it is genetically impossible for me to fall asleep before 2-3 am so if I have to wake at 7am for a job that starts at 9am then its unworkable. If I was in a big city, this would not be a big deal but I live in Cornwall-a place with much reduced work opportunities.

As a consequence of this condition I have been claiming job seekers allowance for a long time. I have repeatedly tried to talk to Drs about it but in this country GPs are useless for sleep conditions and do little other than dole out platitudes about good sleep hygiene.

Now my job seeker advisor-who knows that I suffer from this condition- has rail-roaded me onto a 6 month work program placement which demands that I get up at 7am at the very latest.

Basically I have been put into a situation where I will have to endure 6 months of 360 degree hell with no respite whatsoever. I do not compensate any sleep I miss in the same way as other people. Being exhausted does not mean I fall asleep earlier.

Best case scenario- people on this work placement think I am belligerent and have an attitude problem.
More likely scenario- I incur damage to my health (in the form of excema like rashes-to start with) and succumb to alcoholism (something I have abstained from for over a year) and become a danger to other workers due to concentration problems. And end up receiving benefit sanctions on account of failing to meet the requirements of this program.

If I lived in USA and had easy access to a fire arm I might just turn my self off and experience Peace Perfect Peace.

Ive made an appointment with the Dr. It is unlikely that will be able to help me with what I actually suffer from so I am thinking strategically it might be better to say I am suffering from depression/psychosis in order to try and get myself on the sick. If I am forced to do this program this will probably be the result anyway as constant cortisol has a negative effect on any ones brain.

Please by aware-I WANT TO DO THIS PROGRAM. But the people who run it are unable/unwilling to work with me, refusing to acknowledge that the problems that cause unemployment are intrinsically complicated preferring to insist that a 'one size fits all' approach can be used for everyone. I think one of the people who runs it have an RAF feel about them, so they are probably full of militaristic virtue and belief in a regimented application of a hegemonic schedule in the curing of all of societies evils.
BTW- the name of my disease is Delayed Sleep Phase Syndrome. I doubt you've heard of it, but its a real thing

we live with my mom at the moment who is a big help. in turn I help out with things that my mom cant do (she is getting on a bit). Im not from Cornwall originally, and even though its a nice place with nice people, would like to move back to a big city. However I don't want to leave my mom on her own- she is not frail, but unable to do some things. Plus she might lonely and as I dont have a car I cant easily come and see her.

ImperialBlether- I really am seeking work but its tough down here.

OP you are trying to pitch yourself as being vulnerable and lacking in esteem. But you clearly don't really think that of yourself.

You are very sneery of the 'RAF type'. From which moral high ground, exactly, do you look down from on someone who is actively trying to help others find work?

You don't bother attending a sleep clinic because you have decided (just from looking at their website) that they probably won't be able to help you, because what you have is just so very, very much more special than more mundane sleep disorders. And the people there are just doctors after all who have only trained and studied for years and years to do what they do. They probably know nothing at all. You can do just as good with a quick flick through Google right?

I think you are busying yourself doing lots of stuff which you fool yourself is helping you but you're actually involved in displacement activity, determined to throw 10 problems at every solution.

Millions of people can't or don't ever go to sleep at 11pm and wake at 7am. They still hold down jobs simply because they have to.

Millions of parents of babies and young children survive on only 4-5 hours sleep a night (and broken sleep at that) for YEARS, and still hold down jobs simply because they have to.

You say that if you have to join this job program it might jepordise your health because it will make you feel tired and you might get some eczema? Really? I mean, like really???

parrotsummer I asked OP unless you'd like to speak on their behalf?? Given what OP has already put, it would seem that their only problem is not getting to sleep until the early hours and this would prevent them getting up at 7am for a job. If OP does have relatives for childcare all the better for when they get a job - yay!! If you think seeking advice to 'fake' an illness to receive benefits I think you have the problem.

I will speak on someone's behalf if you're being rude and intrusive (it wasn't what the thread was about after all) and I felt implying that the OP was ruining her daughters education was a swipe below the belt.

Fact is, OP has described how it is. Some people have chosen not to believe her.

Lots of supermarkets have night shift workers. I know around here they're crying out for them because no-one wants to do it.

Parrotsummer- im glad you get it. All those health conditions are whats in the post for me. And today the people I spoke to are under the impression that I will suddenly get into the rhythm of things. I have spent YEARS doing that and it did nothing but damage.

OP - Have you tried taking sleeping pills?

Have you now understood that you should stop taking Modafinil?

It's the buildup Xotic.

It's like ME - 'well everyone gets tired' or depression - 'everyone sometimes feels tired.'

Unfortunately without a diagnosis actually even with one sometimes people just don't get it.

YYY, parrot.

I posted that I did very well in work where an early start wasn't mandatory. This happened in London. There are still many London workplaces that start at 10am, and many that will reward flexibility with flexibility. This is rarely the case in the provinces.

I agree with some PPs that the Modafinil might be affecting your thought processes, Xotic - so might the sleep and the anxiety; together, these could make a toxic combination. It really is a good idea to lay the whole thing bare in front of your doctor and ask for help.

If your induction starts tomorrow - GO TO BED!!! Take a pleasant but not too engrossing book; at least you'll be resting before sleep :)
All the best!

Why - please explain? As stated by OP a job which require a 9am start would be impossible due to their condition. Most schools start before 9am and I wonder of the impact of this. TBH I find this more concerning as an issue than the job and seeking info on 'fake illness'

Until she has been diagnosed with one then she doesn't really have a sleep condition does she? She can't expect flexibility without an actual diagnosis.

She is taking a drug off the internet, which no one knows if that is helping or hindering her sleep patterns.

I realise sleep conditions can be completely awful, but many of us do go to work exhausted on a few hours sleep. It's not fun, it's not ideal and some have to do it for years on end, but until she has a diagnosis which she has yet to be able to get then she can't reasonably except flexibility.

OP, if you are interested in care you could apply for what I do.. HCA on the wards. If you join bank you can do evening or even twilight shifts- 7.00pm- 1.00am.

Forum

If OP had started a thread asking for advice on getting DD to school then the point might be relevant though I would still dispute the nasty 'you clearly don't care about her education' remark.

However she did not.

Therefore assume she's got it covered.

Flowertheskunk- I did a month recently attending courses which depended on early start and so had to take lots of modafinil. After one month my feet were covered in rashes/weeping sores. I still have those rashes/weeping sores right now.
Ecesma to start with- I dont know how bad it will be in 6 months

I recently helped to look after someone who was awake for 3 days and nights after taking one dose of modafinil. Actually, it took 4 of us to babysit, in shifts, because not only was the person wide awake, they also had a complete loss of common sense and grasp of reality. This person is normally kind, practical, sensible and very smart. It was not an experience I would want to repeat TBH. It took about 7 days for them to get back to normal.

Yes, the weeping sores are indicative of skin not healing itself. Sleep is a time the body repairs and heals itself.

U2 you are right that many people go to work exhausted after a few hours sleep.

However this tends to be something that, if prolonged, has a hugely negative impact on mental and physical health and on the things I mentioned above.

I do not have a sleep disorder. Like everyone I sometimes have a disturbed night.

So tomorrow I am a bit tired. The day after? And the day after that?

Now before anyone states they have only had 4 hours since 2011 I will say firstly it is true different people require different amounts of sleep and that secondly around 4 hours is the minimum for most people.

We aren't talking a disturbed night, we're talking 2-3 hours of sleep a night every night.

Think of that sick, shaky, trembly feeling you have after a really terrible night shift. The watery substance that comes from your bum. The nausea.

Op doing that all day every day?

JSA is a pittance. I can tell you now she'd rather work.

Flower and others - In my last job before becoming too ill to work properly (probably ever again), I was very badly bullied. A big part of this bullying was pulling my start time forward to 8:30 and putting me through disciplinary procedures whenever I was late.

I had a massive breakdown, mental and physical.

The early start thing wasn't the only cause of it; there was a lot of nasty stuff going on. But it ratcheted up my stress levels to a literally intolerable degree.

Sometimes "just get on with it" is as much good advice as telling a paraplegic to "just get up and walk".

The eventual diagnosis isn't the issue; the issue is that there is a problem and this is how it manifests. OP is entitled to reasonable adjustment for that. It will help her to be honest with her doctors and to follow up any referrals.

Parrotsummer- yep its when it accumulates. Every one these days misses a little sleep. But when the cortisol accumulates- after a few days I get so uncoordinated/angry. The induction is tommorow- but only a 1pm start so I'm not too worried on that. But I start on monday at either 8-9 am(im not to sure yet). On friday I am due to go the centre for a 6 hour jobsearch program. On that day I will be barely able to function and if they expect me to phone up employers with a breezy tone in my voice I simply will not be able to do it. And if it wasnt for the obligations on friday, I could have a later start the rest of the week and also work friday, thus making up 30 hours a week and then do a job search on my own time.
I get how this program could help a lot of people but I can only imagine it working out opposite for me.

Op, I speak as someone with terrible sleep issues (I've been awake for days at a time before, I'm well aware of the effects lack of sleep has.)

I'm a natural 'lark' - left to myself I'd be up at 4am and in bed by 7. I struggle horribly with the times work send me to meetings in different time zones and expected to be 'on' and sociable till late at night. It's like wading through treacle. I often have to work late with the USA and I hate it!

But I manage to hold down a high level, long hours job. My inability to sleep was seriously damaging my health so I needed to fix it. I largely have. I'm also a scientist, and so I approached it in the following way.

Full work up at a sleep clinic. This is essential. Your GP can and will refer you. Mine ruled out apnoea and a host of other physical things. Verdict? "You just don't sleep much but there's nowt wrong with you." I cannot stress enough how important such a work up is. Apnoea is very common for example, and can wreck your sleep.

Ok, so now I knew there was nothing sinister, but my sleep was still terrible.
dSPS is treatable - if you went and lived in New Zealand you'd adapt to NZ time, so your body CAN shift.

stop self medicating you absolutely have to stop taking internet sourced modanifil. That stuff is not trivial. Stop it. If you need melatonin, that's different, and a much more gentle drug. I have a massive stash from my last trip to the USA and I do think it helps. Very low dose though.

No alcohol at all - none. I was never a big drinker but I understand the temptation to knock yourself out with a bottle of wine after three days awake. But long term, it makes it worse. I'm not teetotal but I'm aware that a drink will bugger my sleep for a while after.

Healthy lifestyle - eat well, excercise

Sleep hygiene - this is the hardest thing, I think. No lie ins at weekends. You must get up at the time you need to every single day, or your body clock will slip.

It is treatable, but you have to work at it, you have to get a formal diagnosis and you must want to treat it. Right now I don't hear that in your posts. I do hear a touch of mania though - please go and see your doc!

mamadoc that's a fascinating PhD theme :) sleep is so interesting!

OP started a thread about 'To fake having a disease' to receive benefits rather than work ffs

I would still dispute the nasty 'you clearly don't care about her education' remark. Would you care to point out my 'quote' as I can't find where I typed 'you clearly don't care about her education' ?

Melatonin is available online (I use it occasionally for insomnia) and having researched what's available I wouldn't touch modafinal with a barge pole.

Christ I am very cautious about melatonin

Oh and melatonin IS available in the UK, on the NHS. It's licences for insomnia in the elderly but is used off licence for children with special needs who struggle to sleep (those this is changing as recent research has found it doesn't increase overall sleep time as it encourages early waking). The liquid form has to be imported and is VERY expensive, as are the quick release tabs but the slow release meltonin is available and is prescribed regularly 'off licence'

Personally I think you need a proper diagnosis and I am sorry but there are things you can do to support your diagnosis prior to a sleep study or even to evidence a proper referral.
I have signs of a condition called REM behaviour disorder, probably caused by a medication I am on. I noticed my first symptoms 10 days ago, I have spoken to a pharmacist, downloaded a sleep app on my phone to monitor my sleep and I have an appointment booked for 2 weeks with my GP (after discussing on phone that I was safe to carry on with mess) in case my monitoring shows anything worrying. Melatonin is a potential treatment for RBD so I have resolved to take nothing whilst I figure it out though I haven't taken it for months anyway.

You can do so much - even it is just writing a diary. Take ownership of the problem

I suffer from delayed sleep phase syndrome to some extent, that extent being that my GP has raised it, which is where I got the idea from, but what I find works for me is:

• its to some extent anxiety-based, so a formal diagnosis and labelling would not help me
• what does really help is routine established over a period of time
• what makes it worse is being able to make up my own routine, as I can quite happily stay awake and functional until 3 am. If I do this several nights in a row, 3am becomes 4am and then 5 am and then I will usually sleep sooner or later which means I stick at the 3-5am stage
• GP advocated just missing out a night's sleep when this happens to reset my body clock and this is very effective
• a practised insomniac like me can very easily function perfectly well for a few days on little sleep
• medication for sleep makes it worse, especially that damned Nytol stuff - makes me hyperactive!
• routine mentioned above takes a few weeks to build up and then works well usually

It sounds to my unqualified judgment that you have very much decided in advance the outcome you want, which is to be unfit to work, and are thinking up reasons to justify that. I would therefore suggest that its entirely possible that what you are suffering from is Munchausens. The talking about faking various illnesses is pretty classic, as is being unable to see how unacceptable such conduct is to other people. I'd also hazard a guess that you have been to quite a few different doctors and health professionals about this and related problems and that you have a tendency to blame health professionals for failing to diagnose you. I might be entirely wrong of course!

Modafinil is a wakefulness-promoting agent (or eugeroic) used for treatment of disorders such as narcolepsy and excessive daytime sleepiness.

Because of the risk for development of skin or hypersensitivity reactions and neuropsychiatric disorders, the European Medicines Agency has recommended that new patient prescriptions should only be to treat sleepiness associated with narcolepsy.

I'm posting this again because you clearly didn't read my previous post, OP.

Modafinil is causing or at least exacerbating your insomnia. It is probably also causing your skin problems. Stop taking it NOW.

Certainly. You asked how it will or is impacting on the DDs education, thereby making an assumption, inherent in the 'impacting' that the OP is allowing her child's education to be impacted.

I assumed since the OP didn't state otherwise she had it covered.

Unwell people do still care about their children, you see. Even parents who claim benefits, funny, that.

i did a month recently attending courses which depended on early start and so had to take lots of modafinil. After one month my feet were covered in rashes/weeping sores. I still have those rashes/weeping sores right now.

But that's not how modanifil is used clinically! It's not designed for use like that. You're taking it as a stimulant 'as and when' and that is not going to do you any good at all.

How much are you taking, and how often?