Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘health

The myth of the eight-hour sleep

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The myth of the eight -hour sleep is a brilliant article on a history of human sleep patterns. In 2001, historian Roger Ekirch of Virginia Tech published a seminal paper, drawn from 16 years of research, revealing a wealth of historical evidence that humans used to sleep in two distinct chunks.

…references describe a first sleep which began about two hours after dusk, followed by waking period of one or two hours and then a second sleep.

These references start to disappear during the late 17th Century. By the 1920s the idea of a first and second sleep had receded entirely from our social consciousness. Doctors urge parents to force their children out of the pattern. At this point, people have become increasingly time-conscious and sensitive to ideas of efficiency and are recommended to sleep in an 8 hour block.

Why were people encouraged to sleep in an essentially unnatural manner? At the turn of the century, with the help of photography, criminals could be more easily tracked and archived so perhaps it was to keep people off the streets and on the straight and narrow. Perhaps it was to ensure that the working masses could work long shifts at the factories?

I wake up every night and feel the need to get up and have a drink, read, go online etc. After reading this article, I am starting to understand that my night time habits are actually more natural than most of my friends.

Hurra for the bi-modal sleep pattern!

via The myth of the eight-hour sleep.

Written by Queen of Sleep

October 10, 2012 at 8:08 pm

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UK health officials probe possible flu jab link to narcolepsy in children | Society | The Guardian

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It seems to take years to investigate the possible impact of Pandemrix. A little bit too long if you asked me. People’s lives have been affected.

UK health officials probe possible flu jab link to narcolepsy in children | Society | The Guardian.

Written by Queen of Sleep

March 30, 2012 at 9:09 am

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Despite Having Doctors Under Investigation – Atos Healthcare’s Contract with Government Extended for Another 3 Years – Plus Atos Update

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A few days ago, I was not surprised to read that GMC (General Medical Council) is investigating the conduct of 12 Atos Healthcare Doctors in The Observer (Atos doctors could be struck off | Politics | The Observer).

Every year I have to attend an interview for Atos reassess my situation. As I am in the process of moving away from London to a much smaller city in the UK, I scheduled my new appointment for 2011  there (new city) and 3 days after I had received the details of my new appointment, I got another letter saying that they had reviewed my file and at this point in time I do not need to attend an examination. For the first time, they seem to take the letters from specialist doctors seriously and I find it such a relief because of previous experiences I get so anxious and stressed before and during appointments with Atos – London. This time i found out that they have changed the number of times you can reschedule you appointment. You used to be able to reschedule it 3 times but now you can only reschedule once. It’s tricky because it is essential that I bring someone who really knows me for the examination as I tend to freeze up, panic and sometimes give inaccurate facts because I get so nervous and the doctors in general are mean, don’t listen and misdiagnose. This is true at least in my case. So, if the appointment I make does not match my carers then I have to reschedule. They are also only able to reschedule 7 weeks forward if you need a date beyond your out of luck. I have been advised on many occasion to call back on the day just before the appointment and reschedule and it works! So I rescheduled my first appointment this year, then Atos rescheduled 2 appointments s after that I thought that I was within my rights to reschedule one more time to my new location, and they let me.

I have been ranting on and on about Atos because, from my point of view, it is a poorly run organisation with under-qualified and rude staff.

You might already have read previous posts about my visits to the local branch of Atos. If not you can catch up here:
Atos Healthcare Recruitment Day Picket 14/06/2011 

Campaigners Warn  Over  Incapacity Benefit Changes 01/06/2011.

New disability test ‘is a complete mess’, says the man who designed it | Politics | The Guardian
Article from the 13th of August

Atos, Therapy and Sodium Oxybate Update 8th of August 2010

Aftermath of the Atos medical Examination 2nd of Agust 2010

Atos Administration makes me Anxious 1st July 2010

Relevant Websites: Atos Healthcare


Written by Queen of Sleep

August 21, 2011 at 9:51 pm

Queen of Sleep is back from no net reception!

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How many sheep can you count?

I have been on a writing course and a holiday in areas of England with no internet access at all. Who knew they existed in 2011?

It’s been lovely, restful and absolutely amazing and that is just an understatement. I have pushed my energy levels to the max but been with people I trust so I have felt absolutely safe. I wonder why it seems so difficult for some people to understand what living with narcolepsy is really like and so easy for some others. It is probably a combination of life experience and empathy skills that makes all the difference. Imagination and the ability to put yourself in another person’s shoes/situation and really feel what it could be like to have/be “……….” The ability to feel empathy is only the beginning. Some need processing time or will try to help straight away. For example, I can cure you with XYZ. Maturity in facing difference can only come from knowing that 1. Never give advice without having been asked. 2. Listen (properly) 3. realise and accept that you and your history (point of view) is one of many and that your advice might not be right and yet that at the same there could be one of many right answers. People are quick to judge and quick to categorise in order to feel more secure. I have pushed many potential friends away by being too upfront and in your face with explaining EVERYTHING about narcolepsy. Perhaps it’s a stage you have to go through when dealing with and accepting a condition. I feel that I have now left it behind and my personality has started to come forward more.

There are stages in life that could affect the quality of sleep for women, for example pregnancy, here is a summary of these:

20’s and 30’s: Check your thyroid. My neurologist checked my thyroid as part of the Narcolepsy diagnosis. New moms can get postpartum thyroiditis, which 5 to 10 percent of women develop in the year following delivery. If you’re too jumpy to sleep or have extreme fatigue postpartum, see your doctor.

20’s and 30’s: Depression – feeling blue can cause sleep difficulties some antidepressants may also have sleep related side effects. Ask your doctor about your antidepressants!

40’s: Check when/how often you go to the toilet at night! It could be a urinary tract infection because .”Decreasing estrogen levels in the mid-40s leads to a thinning of the lining of the vagina and bladder, which makes perimenopausal women more prone to infection,” says Dr. Corio, author of The Change Before The Change. Talk to your doc if you notice a change in your bathroom habits.

40’s: Deep sleep decreases in your late 40’s making night-time awakenings more frequent. Improve your restorative sleep  (called delta or slow-wave sleep) by exercise more. Aim for 30 minutes of moderate aerobic activity on most days, suggests Wilfred R. Pigeon, PhD, director of the Sleep and Neurophysiology Research Lab at the University of Rochester Medical Center.

Your 50s+: Check the prescription drugs you may be taking for high blood pressure and cholesterol. They could affect your sleep. Check with your GP and if it is a potential problem ask if it might improve your sleep to take the pills in the morning instead of the evening.

Your 50s+: Check the prescription drugs: statins for cholesterol-control can deplete your body’s muscles of co-enzyme Q10, a natural protein required for normal functioning of muscle cells; the resulting muscle aches might make falling asleep a challenge. Ask your GP/Neurologist/Sleep Doctor if you might benefit from taking a co-Q10 supplement.

Your 50s+: Snoring and Sleep Apnea (OSA). There is a greater possibility to develop sleep apnea after the menopause when progesterone levels drop and it’s common to gain some weight.


Written by Queen of Sleep

May 6, 2011 at 2:53 pm

Allergy Show at Olympia London 6-8th May 2011

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Allergy Show – Free Admission eTicket Registration.

The UK’s largest annual gathering of people living with: allergies, skin conditions, eczema, migraines, coeliac disease, hay fever, asthma, food intolerances and chemical sensitivities.

If you are suffering from an allergy etc AND narcolepsy then you know how much of a pain in the backside it can be when you have to learn how to control both at the same time. I get hayfever in the summer and it makes me stay indoors during certain periods. It’s annoying when I know how much I need the sunshine…and how much I love the sunshine!

You can get a free ticket if you register on their website using the link above!


Written by Queen of Sleep

April 1, 2011 at 3:39 pm

38 Degrees | Tell your MP to protect the NHS

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All of who live in the UK and care about the NHS follow the link below and tell your MP that you are NOT happy about the proposed changes to our National Health Service. All you need to do is watch Michael Moore’s Sicko to understand how lucky we are to have access to such amazing health care!

38 Degrees | Tell your MP to protect the NHS.

Written by Queen of Sleep

April 1, 2011 at 3:20 pm

New disability test ‘is a complete mess’, says the man who designed it | Politics | The Guardian

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New disability test ‘is a complete mess’, says the man who designed it | Politics | The Guardian.

He adds that the current test is “terribly malfunctioning”. I couldn’t agree more but the new test has been/will be designed by the same person who created the ESA test. It’s a big BUT, considering the whole form only applies to you if you have visible disabilities. When will the systems acknowledge neurological disorders? According to ESA they can’t exist at all because there is no questions nor space relating to this type of question. In Tory land neurological difficulties will probably be completely erased to fit in the Big Society!

I do agree with the article that it is good to review cases now and again, especially the long term ill but wouldn’t it be much more bareable if their attitude was one of support and guidance rather than strategic ticking to consciously fail applicants because “Drs.” have to fail xyz cases a day?

Every time I go for a “medical” interview, I regress the progress I have made health wise in the last three months. I panic because they don’t want to hear me, they don’t want to listen. The Dr. thinks I am lying. Occasionally, when I get the report I don’t even think I have been in the same room as the man/woman interviewing me. I could rant all day about the stress that these interviews induce in me and friends with narcolepsy but I won’t, why waste energy when it’s so precious to me? 😉

Written by Queen of Sleep

February 23, 2011 at 12:17 pm

The Great British Sleep Survey

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Click on the image to participate!

Written by Queen of Sleep

January 29, 2011 at 2:30 pm

Free Sleep guide and CD this weekend | Life and style | guardian.co.uk

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Free Sleep guide and CD this weekend | Life and style | guardian.co.uk.

Free Sleep Stuff this weekend on both Saturday 29th and Sunday 30th January!

The Good Sleep Handbook

The Good Sleep Handbook

Written by Queen of Sleep

January 28, 2011 at 11:51 pm

It has Never felt so Good being Angry

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FireLast year, right before Christmas, I fell out with a friend. It was the most remarkable experience for me. I have fallen out with friends in the past sometimes in a dramatic way and sometimes we just drifted apart slowly. This time was different because of the manner in which it happened. I had just been visiting a friend’s art show and afterwards everyone seemed to congregate in the nearby pub. I don’t drink alcohol very much as a general rule because of my health and the medication I am taking but this night was different.  All of a sudden I saw them from an outsiders perspective. I started to get even more irritated with all the nonsense. I had a drink and got slightly more irritated.It was as if I saw people who I thought were my friends in a new light. Superficial, boring and ridiculous. I had another drink.  I think at this point I was ready to leave when a ‘friend’ drops a nasty comment my way. All of sudden, my control and protection mechanisms disappear. You see, I get bad cataplexic attacks when I get angry. The only, environment I have felt safe enough to allow myself to feel this type of anger has been and still is at home and it’s normally my partner who is involved  and it’s normally about some ridiculous domestic issue. Or, not because I just tend to drop to the floor before I get the opportunity to say a word…

This time, I got really angry and loud in public!!!! It felt amazing and liberating! I haven’t been able to shout at anyone like that since I was 13-14 years old without collapsing. I felt really proud of myself afterwards.

3 years ago I tried getting angry in a group therapy psyche drama group but it really didn’t work. I could only be angry or try to be angry with abstracts, not a person or an event or anything in particular. The whole episode was quite funny when I think about it in retrospect. There I stand with a hitting device made of out a piece of hose hitting a table that has been covered with rugs trying to experience anger, and trying desperately to be able to allow myself to feel angry, but failing miserably. Where was Woody Allen? (lol)

I behaved badly and so did my friend. I apologised after wards whereas she is still sulking. If she doesn’t apologise she is worse a friend than I realised, and everything I experienced that evening in terms of superficiality was completely real.

I think I have written about this before. As you go through change your friends won’t necessarily stay with you because what once was a friendship was not based on the real you.

Real friends won’t leave your side.

Read more on cataplexy here: Patient UK on Cataplexy


Written by Queen of Sleep

January 23, 2011 at 11:46 pm