For the past five years I've lived with an insomniac.
Well, someone with Delayed Sleep Phasing Syndrome, but both terms are actually irrelevant because they are both a complete figment.
I realise this will anger any insomniacs or DSPS sufferers reading this, but it is not intended as a flippant remark; it may be the key to your cure.
The person I live with has never slept well, but it was around the time he was a student that he lost his grip on sleep altogether.
After a period of increasingly poor sleep patterns - probably made worse by the student lifestyle of late nights and late starts - he started to have occasional sleepless nights that continued into his adult life becoming gradually more frequent.
Then one day he had two nights in a row of no sleep at all.
On night two he went to bed exhausted, desperate to sleep, but didn't.
This scared him.
On the third night, not wanting to risk not sleeping again, he had a drink. It knocked him out.
From this point on he started to occasionally drink before bed with the express purpose of facilitating sleep. He then found he couldn't sleep without it.
It was very worrying, buying a litre bottle of rum every week to have by the bed. Watching him go to work hungover every day.
He was also putting on weight and his general health was suffering.
He went to his doctor but they were no help. Your average GP does less than a day of training on sleep problems. The guy was just sitting there Googling and suggesting Horlicks.
So we went to an NHS sleep clinic.
They asked him some questions about his sleep patterns. His tendency towards late bed times and late wake times got him a diagnosis of Delayed Sleep Phasing Syndrome - basically a broken body clock.
The diagnosis was a relief and a burden. Finally we had something to hang it all on, but it was horribly official, he had something wrong with him and would never sleep without help.
The doctor gave him Circadian Melatonin, which worked.
He was cured!
For a while.
After a time the Melatonin - or rather the placebo effect of the Melatonin - stopped working.
We went back and were told to increase the dosage. We did. It had a limited short term effect and then, stopped working again
We went back and were told "Well in that case, this is the end of the road for you"
An incredibly clumsy and brutal thing to say to a 30 something who can't sleep for more than 3 hours a night without booze, has a lifetime of 9-5 work ahead of him and a mortgage to pay.
So off we went to a private clinic.
They asked us to complete copious questionnaires - hundreds of pages - which we brought along to the first of many £150 an hour sessions. The constant financial drain of seeking cures (and keeping a fully stocked booze cupboard) was also very stressful.
Our notes were tossed aside without being read and the doctor asked no questions. We were given a prescription for Trazodone and Clonazepam and sent on our way.
That night he slept.
Not great sleep. Drug sleep. But he slept and that was what we needed, however we could come by it.
Yes, the drugs were strong and harsh and turned him into a zombie, gave him sleep paralysis, waking nightmares, no energy during the day. But as an insomniac, as someone with Delayed Sleep Phasing, this was as good as life was going to get, right?
Well eventually these drugs stopped working for him too.
This, in addition to the fact they were making him feel awful, pushed him to take a new approach.
He bought a book called The Effortless Sleep Method and if you have a sleeping disorder I urge you to read it. It will almost certainly cure you.
The book is written by an ex-insomniac so she knows what she's talking about.
She had tried all of the things he had tried, been to the same clinics, taken the same drugs, had the same compromised life.
Don't worry, I'm not going to get all woe is me on you, our life is pretty good, there are people with much, much worse to deal with, but it's amazing how much a sleeping problem can impact everything.
He never had any energy, so I did all of the chores, cooking, gardening, DIY, driving, errands, shopping, Christmas shopping - everything.
Didn't begrudge it for a moment, but it was sometimes tough, especially if I was ever ill myself. A memorable example of this is having to go to Sainsbury's and do the grocery shopping when I had the vomiting bug.
His lack of energy also meant that we never went anywhere. After a long day at work on three hours sleep he would, naturally, want to come home and rest. Then at the weekend he would want to stay put, having spent all week forcing himself up and out of the house.
If I wanted to go out anywhere, I went with friends or more often alone.
Some of my friends have never met him and I've known him for nearly ten years.
We have separate bedrooms.
Actually, I don't mind this one. I like having my own room and spreading out in a big double bed. Studies show you get much better sleep alone. Every cloud…
Holidays. Now they were a struggle. Choreographing flight times and paying for airport hotels at both ends so that he got the maximum time in bed. Constantly seeking out foreign supermarkets to get that half bottle of whiskey or he won't sleep tonight. Oh and he slept even worse in strange beds, so they were never restful breaks, they were kind of torturous for him.
The strange bed problem also excluded going anywhere overnight back home such as a friend's wedding or to my parent's house for a visit. He couldn't afford to have a disrupted night when he was working.
And his health. He put on weight. He got shingles. He often suffered viral fatigue.
You'll notice I'm gradually moving into the past tense. That's because this book appears to have worked.
We didn't believe it would. You get very jaded after years of quackery and failed cures. But trust me, this isn’t the next placebo, this is the end of his problems.
There's a lot of advice in there but the main point is painfully simple. None of us are born without the ability to sleep. There is no such thing as insomnia - as a concrete condition that is.
Don't get me wrong, to the 'insomniac' it is very real. If you are lying awake all night every night it feels eminently real.
My friend jumped off a bridge a few years ago because of voices in his head. They were very real to him despite not being there at all in actuality.
I'm not comparing mental illness with insomnia of course but I suppose what I am saying is, things are not always as they seem.
Your mind is a powerful thing. It can create psychosomatic illnesses, it can respond to placebos, and it can certainly create a decade long sleeping disorder out of a few bad nights caused by stress.
Insomnia is not a condition, it is a symptom. Born out of a period of stress or anxiety and then maintained by the power of the mind.
You have a bad night, and another, and another and then you start to classify yourself as an insomniac, then it's a done deal. The longer it goes on the more you tell your mind, I am an insomniac, I don't sleep, this is what I do, this is what I am.
Then you get a diagnosis and that solidifies it further.
Then you take a pill and your brain gets the message that you are sick and cannot sleep without help.
This book basically teaches you to stop thinking of yourself as an insomniac and just go to sleep.
It sounds too simple but that's what sleep is to people who sleep well. Simple.
They lay there, think nothing of it and they sleep.
The 'insomniac' lays there and they think about it, they obsess over it, they worry that they're not asleep yet, they try and try, they force it when it’s not something you can force, it's not something you can 'do'.
So it doesn't happen. The opposite happens, they remain awake and aware of just how awake they are.
Then they look at the clock. Then they realise they only have four, three, two hours before the alarm. Then they panic, and who ever slept panicked?
After a while they come to fear bed time altogether. Most people skip to bed, can't wait for some nice rest.
But the 'insomniac', before they even get into bed they have an image in their head of how this is going to go down. Same as last night. I'll be tossing and turning until 3 or 4am. I know how this goes.
Self-fulfilling.
The other golden piece of advice is to get off the meds. In this case Trazodone and Clonazepam. Two highly addictive, super strong benzos that were given out like sweets - and with no warning - despite the horrible side effects and even worse withdrawal symptoms.
Some people need to go to rehab clinics to get free of them. Some people never get off them.
Our house was a makeshift rehab clinic for a week. It was horrible. He couldn't be left alone, he had this unspecified fear which had him sleeping in with me, if I went out on an errand someone had to come round and sit with him, his head was spinning, he was shaky, he felt sick, cold sweats, no appetite. I had to hide all of the knives because suicide was a withdrawal symptom. As was homicide.
Do not take these if you have not already started to and if you are on them, go to your GP and work out a way of reducing your dosage in a managed way so that you can get free of them.
They will damage you long term and you do not need them.
You can sleep. Everyone can sleep.
Read the book, get off the meds and sleep.
Wednesday, 24 April 2013
Monday, 18 February 2013
Help a charity this half term
As you may know from this previous blog entry, the charity which supports my learning disabled brother is facing a significant funding shortfall.
The charity runs a working farm that is open to the public. It's a really good day out for kids.
The learning disabled residents work on the farm and help to run the shop, nursery and restaurant. All of the takings go to the charity.
So if you have children, and want to take them somewhere fun this half-term (or indeed ever) please consider taking them to the Rare Breeds Centre.
Also, if you want a day off from the kids, you can sign them up for a Young Farmers Day. A whole day on the farm, getting close to the animals:
Please go along, have fun and support an amazing charity.
The charity runs a working farm that is open to the public. It's a really good day out for kids.
The learning disabled residents work on the farm and help to run the shop, nursery and restaurant. All of the takings go to the charity.
So if you have children, and want to take them somewhere fun this half-term (or indeed ever) please consider taking them to the Rare Breeds Centre.
Also, if you want a day off from the kids, you can sign them up for a Young Farmers Day. A whole day on the farm, getting close to the animals:
Please go along, have fun and support an amazing charity.
Saturday, 19 January 2013
Derek Acorah on rape
Last week I saw Derek Acorah's book 'Haunted' in a bargain bin.
Well, I say 'bargain' bin. It was 50p, which I think we can all agree, is too much.
I thought it would be an amusing read, and for the most part I was right. The first chapter for example, offers up the gem "...at times I come across spirit beings who are behaving in an anti-social manner" Huh?
But a few chapters later this paragraph popped up:
"I explained to Terry that, difficult though it might be to come to terms with, it is my belief that before we enter our physical lives we choose the way in which we will live those lives. We choose the burdens we will have to carry, the things we will have to endure and also the manner of our passing"
How naive I thought. He clearly hasn't considered stuff like death in childhood, brutal murder or rape.
Oh, it turns out he has, because in the next chapter he talks to a woman whose father raped her throughout her childhood and writes:
"As Nancy related this story to me I realised that unfortunately this was a case where people have to undergo certain harsh experiences in their lifetime in order to achieve soul growth. In other words, they had agreed to these experiences before they had incarnated into their physical bodies"
From the bargain bin, to the recycling bin. Let's hope it comes back as something more useful. Ditto that for Acorah when he passes in the manner of his choosing.
Well, I say 'bargain' bin. It was 50p, which I think we can all agree, is too much.
I thought it would be an amusing read, and for the most part I was right. The first chapter for example, offers up the gem "...at times I come across spirit beings who are behaving in an anti-social manner" Huh?
But a few chapters later this paragraph popped up:
"I explained to Terry that, difficult though it might be to come to terms with, it is my belief that before we enter our physical lives we choose the way in which we will live those lives. We choose the burdens we will have to carry, the things we will have to endure and also the manner of our passing"
How naive I thought. He clearly hasn't considered stuff like death in childhood, brutal murder or rape.
Oh, it turns out he has, because in the next chapter he talks to a woman whose father raped her throughout her childhood and writes:
"As Nancy related this story to me I realised that unfortunately this was a case where people have to undergo certain harsh experiences in their lifetime in order to achieve soul growth. In other words, they had agreed to these experiences before they had incarnated into their physical bodies"
From the bargain bin, to the recycling bin. Let's hope it comes back as something more useful. Ditto that for Acorah when he passes in the manner of his choosing.
Monday, 14 January 2013
Help needed
When my brother Nick was born with brain damage the first thought my parents had was, what will happen to him when we die?
Being Nick's only sibling meant that throughout my childhood the same thought kept occurring to me too.
Over the years we heard about people who had kept their disabled child at home for their whole life and then when the parents had died, the child, now an adult, with no experience of anyone but their parents, was shunted into a care home.
One story I heard, which I have never been able to shake, was of a disabled man known to a family friend, who could not adjust to, or even believe the fact that he was never going home again, so he sat in his care home with his bag packed and coat on, waiting every day for his mum to collect him.
Thankfully Nick has me as well as my folks, so I prepared myself to be his carer once my parents had passed away. Although I knew this would not be ideal for Nick. He is a lively person, easily bored. I couldn’t provide a full enough itinerary or be as good company for him as his peers. And again, what if he outlived me? That thought really scared me.
So my parents spent years researching options (more details on my Mencap blog) and eventually found The Canterbury Oast Trust - http://www.c-o-t.org.uk/ - a charity founded by the parents of disabled children who were worried about their children's futures and wanted to provide them with both a save haven and an independent life.
Nick now lives there, in a shared house, with a group of friends and carers on hand. His house is really lovely, it is set on farmland and there is a duckpond outside his bedroom window.
The farm is a working farm, and is open to the public. The learning disabled adults who live there work on the farm and in other areas of the charity such as the woodland area, the plant nursery, the restaurant, a tea room in nearby Rye and a number also attend an art project called The Rainbow Gallery where they produce and sell beautiful pieces of art.
My brother was not supposed to be able to walk or talk. Seeing him produce lovely pictures and textiles, it makes me so happy. Sad too. I often wonder what learning disabled people who are just left in the corner of a day room could achieve, if people encouraged them.
I can't express how much I love this charity and everyone who works there. It has changed my brother's life and my parents don’t have to worry about his future as this is now his home for as long as he lives and he will always be surrounded by friends and carers.
Unfortunately, like all charities The Canterbury Oast Trust is being affected by the Government cuts. This year they face a shortfall of nearly half a million pounds.
Of course if you would like to donate to them, that would be lovely - http://www.justgiving.com/cot/donate - but this is not a plea for money. It's a plea for your spare stuff.
The fundraising team need the following things for the gallery, shop and nursery. If you have any of them lying around, please send them to the address at the end of the blog:
Buttons
Ribbon
Sequins
Textiles
Any arts and crafts supplies at all really
Bubble Wrap
Plant pots
Anything that could be raffled
Anything that they could sell in their charity shop
And thinking ahead to next Christmas:
Christmas decorations
Toys for Santa to give away at the farm Christmas event (really small stuff, a toy car, colouring in pens, a teddy)
These items that might be clogging up your cupboards will allow the charity to raise much needed funds and are just as valuable as a cash donation.
If you have kids, you can help by visiting the farm, which is a great family day out. Ticket sales go to the charity: http://www.rarebreeds.org.uk/farm-map
You can dedicate a tree in the Rainbow Wood to a loved one for £50 http://www.rarebreeds.org.uk/woodland-walks
Or you can donate for free by doing a few web searches via this link: www.everyclick.com/canterburyoasttrust One search = One pence. It all helps.
The address for sending items is:
Fundraising Office, Rare Breeds Centre Highlands Farm Woodchurch Ashford Kent, TN26 3RJ
Thank you in advance for your kindness.
As a reward, here is a clip I filmed last night of what might be the best game show answer of all time. I can't stop laughing at it. Enjoy:
Being Nick's only sibling meant that throughout my childhood the same thought kept occurring to me too.
Over the years we heard about people who had kept their disabled child at home for their whole life and then when the parents had died, the child, now an adult, with no experience of anyone but their parents, was shunted into a care home.
One story I heard, which I have never been able to shake, was of a disabled man known to a family friend, who could not adjust to, or even believe the fact that he was never going home again, so he sat in his care home with his bag packed and coat on, waiting every day for his mum to collect him.
Thankfully Nick has me as well as my folks, so I prepared myself to be his carer once my parents had passed away. Although I knew this would not be ideal for Nick. He is a lively person, easily bored. I couldn’t provide a full enough itinerary or be as good company for him as his peers. And again, what if he outlived me? That thought really scared me.
So my parents spent years researching options (more details on my Mencap blog) and eventually found The Canterbury Oast Trust - http://www.c-o-t.org.uk/ - a charity founded by the parents of disabled children who were worried about their children's futures and wanted to provide them with both a save haven and an independent life.
Nick now lives there, in a shared house, with a group of friends and carers on hand. His house is really lovely, it is set on farmland and there is a duckpond outside his bedroom window.
The farm is a working farm, and is open to the public. The learning disabled adults who live there work on the farm and in other areas of the charity such as the woodland area, the plant nursery, the restaurant, a tea room in nearby Rye and a number also attend an art project called The Rainbow Gallery where they produce and sell beautiful pieces of art.
My brother was not supposed to be able to walk or talk. Seeing him produce lovely pictures and textiles, it makes me so happy. Sad too. I often wonder what learning disabled people who are just left in the corner of a day room could achieve, if people encouraged them.
I can't express how much I love this charity and everyone who works there. It has changed my brother's life and my parents don’t have to worry about his future as this is now his home for as long as he lives and he will always be surrounded by friends and carers.
Unfortunately, like all charities The Canterbury Oast Trust is being affected by the Government cuts. This year they face a shortfall of nearly half a million pounds.
Of course if you would like to donate to them, that would be lovely - http://www.justgiving.com/cot/donate - but this is not a plea for money. It's a plea for your spare stuff.
The fundraising team need the following things for the gallery, shop and nursery. If you have any of them lying around, please send them to the address at the end of the blog:
Buttons
Ribbon
Sequins
Textiles
Any arts and crafts supplies at all really
Bubble Wrap
Plant pots
Anything that could be raffled
Anything that they could sell in their charity shop
And thinking ahead to next Christmas:
Christmas decorations
Toys for Santa to give away at the farm Christmas event (really small stuff, a toy car, colouring in pens, a teddy)
These items that might be clogging up your cupboards will allow the charity to raise much needed funds and are just as valuable as a cash donation.
If you have kids, you can help by visiting the farm, which is a great family day out. Ticket sales go to the charity: http://www.rarebreeds.org.uk/farm-map
You can dedicate a tree in the Rainbow Wood to a loved one for £50 http://www.rarebreeds.org.uk/woodland-walks
Or you can donate for free by doing a few web searches via this link: www.everyclick.com/canterburyoasttrust One search = One pence. It all helps.
The address for sending items is:
Fundraising Office, Rare Breeds Centre Highlands Farm Woodchurch Ashford Kent, TN26 3RJ
Thank you in advance for your kindness.
As a reward, here is a clip I filmed last night of what might be the best game show answer of all time. I can't stop laughing at it. Enjoy:
Wednesday, 2 January 2013
Fair Fares Now
Today South West Trains wished me a crappy new year by raising my annual train fare from an already unreasonable £2000 to £2336.
I go 7 stops into London.
This is now well over 10% of my take home pay and if it carries on at this rate, I will be well on the way to paying almost £3000 this time next year.
I'm sure plenty of you are in the same boat/train.
Please sign this petition asking the Transport Secretary to stop slowly sending everyone bankrupt:
http://you.38degrees.org.uk/petitions/fair-fares-now
Thanks.
I go 7 stops into London.
This is now well over 10% of my take home pay and if it carries on at this rate, I will be well on the way to paying almost £3000 this time next year.
I'm sure plenty of you are in the same boat/train.
Please sign this petition asking the Transport Secretary to stop slowly sending everyone bankrupt:
http://you.38degrees.org.uk/petitions/fair-fares-now
Thanks.
Saturday, 29 December 2012
Best of 2012
2012 is drawing to a close, so in lieu of writing a proper blog summing it all up, I took a look back over the odd collection of pictures I've accumulated on my phone and decided to give out some New Year Honours of my own.
Drum roll please.
Best local news story.
Best attempt at an evil face.
Best video games.
Best commuter activity.
Best magazine scoop about a cat who is a also a God.
Best Bid TV product. Peter Simon called it a 'work of art'
Best parking.
Best protest.
Best litter, just yards from my home.
Best courier information.
Best attempt at putting Christ back into Christmas.
Best festive food.
Manliest muesli.
Most inappropriate Halloween decoration for a chemist.
And finally, the most awkward moment of the year.
Happy New Year!
Drum roll please.
Best local news story.
Best attempt at an evil face.
Best video games.
Best commuter activity.
Best magazine scoop about a cat who is a also a God.
Best Bid TV product. Peter Simon called it a 'work of art'
Best parking.
Best protest.
Best litter, just yards from my home.
Best courier information.
Best attempt at putting Christ back into Christmas.
Best festive food.
Manliest muesli.
Most inappropriate Halloween decoration for a chemist.
And finally, the most awkward moment of the year.
Happy New Year!
Sunday, 16 December 2012
Mind Christmas Appeal
As anyone who isn't a Walt Disney character knows, Christmas isn't all fun, fun, fun.
Indeed, if you're lonely or depressed it can be quite the opposite.
I found out today that a good friend of mine, whom I have spent the past decade visiting in various psych wards, is back in hospital, just in time for Christmas.
As ever, there was an ominous silence before I found this out. No calls. Texts and emails unanswered.
There's always a communications blackout shortly before an episode of psychosis sets in. The person closes in on themselves, resists contact and gets consumed by the condition. It's extremely isolating.
They don't want to worry family and friends - if they are lucky enough to have them - or perhaps they don't feel like we can actually help. I guess we can't. Not really.
The mental health charity, Mind, runs a helpline for people in crisis. They offer expert advice, support and most important of all, someone to just listen.
They need £20,000 to man it over Christmas.
If you're feeling festive, consider this an extra present. Donate what you can to help someone who is feeling alone to get some advice and support at a difficult time of year.
Merry (if you're lucky) Christmas.
Indeed, if you're lonely or depressed it can be quite the opposite.
I found out today that a good friend of mine, whom I have spent the past decade visiting in various psych wards, is back in hospital, just in time for Christmas.
As ever, there was an ominous silence before I found this out. No calls. Texts and emails unanswered.
There's always a communications blackout shortly before an episode of psychosis sets in. The person closes in on themselves, resists contact and gets consumed by the condition. It's extremely isolating.
They don't want to worry family and friends - if they are lucky enough to have them - or perhaps they don't feel like we can actually help. I guess we can't. Not really.
The mental health charity, Mind, runs a helpline for people in crisis. They offer expert advice, support and most important of all, someone to just listen.
They need £20,000 to man it over Christmas.
If you're feeling festive, consider this an extra present. Donate what you can to help someone who is feeling alone to get some advice and support at a difficult time of year.
Merry (if you're lucky) Christmas.
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