Handicaped sleeping

I came accross this blog recently and I wanted to share it with you.

Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.

Victoria Brignell

Published 08 September 2008

‘I dreamt that I saw Iain Duncan Smith riding on an ostrich through Parliament Square. Make of that what you will.’ Victoria Brignell on insomnia and other matters…
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At the time of writing I am going through a bout of insomnia. Last night I lay in bed and watched the green numbers on my digital clock flick through the hours of the night at the same pace as a snail carrying a heavy bag of shopping. By the time dawn arrived, it felt as if those numbers were taunting me. (Lack of sleep does strange things to one's psychological state).

Insomnia is not a new phenomenon for me. Since I became a crip 25 years ago there have been many periods when I've had difficulty sleeping. In my first weeks as a tetraplegic, while a patient in Great Ormond Street Hospital, I was given medication each evening to help me drop off. The nurses were clearly under orders to make sure I received the medicine without fail as there were some nights when I was actually woken up so they could give me the medicine designed to send me to sleep. I never did get to grips with the logic of that.

My most severe case of insomnia occurred in my last year at university. For about a fortnight during my Finals I survived on two or three hours of sleep a night. It didn't seem to do me any harm - I still managed to gain a 2:1. Like Mrs Thatcher, who famously only needed five hours sleep a night in her heyday, I too seem to be able to function with very little sleep.

When I'm not experiencing full-blown insomnia, I often wake up between four and 5am and don't fall back to sleep again. Over the years I've grown used to hearing the dawn chorus (remarkably, we do seem to have enough birds in my area of inner London to create one). If there is such a thing as reincarnation, it wouldn't surprise me to discover I'd been a milkman or a Today programme presenter in a previous life.

It's not uncommon for people with spinal cord injuries to find sleeping a problem. A study of 300 people who had been living with paralysis for 20 years revealed that more than half experienced fatigue. In 1998, Portuguese research suggested that 60 per cent of paralysed people suffer from "sleep disturbance".

Partly this is because we face strains and anxieties in our lives that can make it hard to unwind and relax at the end of the day. But it's also caused simply by the fact that tetraplegics like myself don't become physically tired in the same way that an able-bodied person does. When I go to bed I often feel mentally drained but bodily exhaustion is an unknown concept to me. (Paraplegics may have a different experience).

Our surroundings can potentially have a big influence on our sleeping patterns. In the case of us wheelchair users, it's possible that we might be forced to sleep, permanently or temporarily, in a room that isn't a bedroom. For example, when leaving hospital, there may be a delay in adaptations being completed at home. After my stay in Great Ormond Street Hospital, I spent three years sleeping in what had been my parents' dining room because I could no longer reach my bedroom upstairs. Although this didn't affect my own sleeping ability, I can understand why others might find this unsettling. It was only when my family moved house that I again acquired a proper bedroom.

There are a number of other medical factors that can make sleeping hard for crips (thankfully these don't apply to me at the moment). Paralysed people often need to be turned regularly in bed to avoid developing pressure sores. Sometimes the touch of bedcovers can trigger muscle spasms, either stopping a person falling asleep or waking them up. And a particularly unpleasant cause of a bad night's sleep is pain.

According to the Spinal Injuries Association, about 80 per cent of people with spinal injuries suffer chronic pain. Indeed, pain is cited by spinally injured people as the most important factor in reducing their quality of life. For many, it is the severity of the pain that is disabling rather than the paralysis produced by spinal cord injury. Pain can leave wheelchair users feeling totally exhausted and they may have to pace their work and social life accordingly.

Unsurprisingly, mental distress can also have a major impact on sleep. Some people who become paralysed in an accident may experience post traumatic stress disorder. PTSD is a natural emotional reaction to a deeply frightening, shocking and abnormal experience. Often the disturbing incident is re-experienced through distressing flashbacks and dreams. As well as anxiety attacks, outbursts of anger, poor concentration, feelings of estrangement from others and a lack of interest in normal activities, the symptoms of PTSD include difficulty in falling or staying asleep. Similarly, if a disabled person feels emotionally overwhelmed by their situation and develops depression, this too can affect their sleeping.

As well as reducing my sleep, being tetraplegic means I require not just a bed at night but other equipment as well. My live-in carer sleeps in a room next to mine so I use an intercom system to call her whenever I need assistance. This intercom is a typical one normally bought by parents for their babies, and a few years ago it provoked an amusing conversation.

One evening, shortly after I had gone to bed, my carer noticed water coming through the kitchen ceiling. We called the landlord who arranged for an emergency plumber to visit us. When this plumber failed dismally to detect the source of the problem, my landlord advised us to call the fire brigade. (By this time, the trickle of water had become a torrent). So just before midnight, three firemen trooped through the flat. Luckily, they managed to stop the waterfall (it transpired that a pipe had burst between my flat and the one above it). Of course, while all this drama had been taking place, I was still stuck in bed. As the firemen were leaving, one of them noticed the 'parents' end' of the intercom, turned to my carer and said: "I hope we haven't disturbed your baby". My carer refrained from pointing out that the "baby" was actually 25 years old.

The other piece of equipment I use while in bed is a 'ripple mattress'. This plastic sheet lies on top of a normal mattress and contains channels which inflate alternately with air. Its purpose is to prevent pressure sores and I've used one ever since I became disabled. Some people might find the hum of the pump irritating but over the years I've become accustomed to it and now it seems odd not to hear it in the background. The noise only becomes unbearable when one of the pipes leading from the pump to the ripple mattress gets accidentally disconnected. My carer then has to get down on her hands and knees to work out exactly where the pipe has become loose and push it back into position. Most nights, though, the ripple mattress helps to prevent my insomnia rather than causing it.

As you can imagine, lying awake in bed for hour after hour can be a frustrating and lonely experience. It wouldn't be so tedious if I could get up and use the time constructively but that's not possible because there's no one around to enable me do so. Two people are necessary to get me up but I only have one carer with me at night and she's only there on call (like any normal person, she expects to sleep at night). Listening to the radio isn't an option either because it could disturb my carer. If I put the radio on, there's a risk the sound might be picked up by the intercom and wake her up.

There still are times when I find insomnia annoying. But in recent years, my attitude towards it has changed considerably. I've grown to realise that these night hours when I'm awake are among my most creative. In the darkness I've composed poems, song lyrics, short stories and play plots in my head. Half of these columns have been devised in the early hours of the morning. Of course, I have no means of writing anything down while I'm in bed. But this acts as a kind of quality filtering mechanism. My philosophy is this. If I can still remember something I've written in my head the next time I have chance to record it on my computer, then that's great. But if I've forgotten it, then the chances are it didn't merit recording in the first place.

Of course, when insomnia strikes, I don't always feel like being creative. Instead, I sometimes occupy my time by setting myself challenges. Can I list all the countries of Africa in alphabetical order? Can I name all Shakespeare's plays? Can I remember the correct chronological sequence of the kings and queens of England? (For some reason, I always get confused during the Wars of the Roses). And can I recite all the lyrics on the Abba Gold album?

Becoming aware that many people, both disabled and able-bodied, have sleep difficulties has helped me to come to terms with my own situation. According to recent research, more than 30 per cent of adults regularly experience sleep problems and only five per cent of adults report never having trouble sleeping. It's reassuring to know I'm not alone.

And although I might sometimes be afflicted by insomnia, there are nights when I sleep perfectly well. Ironically, on one occasion when I did manage to sleep all the way through the night, my carer lay awake worrying that something nasty had happened to me because I hadn't called her. Moreover, whenever I do sleep, I tend to experience the most vivid and entertaining dreams. Perhaps the most surreal occurred during the period I worked in the BBC Political Programmes department. I dreamt that I saw Iain Duncan Smith riding on an ostrich through Parliament Square. Make of that what you will.

Interestingly, for the first decade after becoming disabled, I continued to be able-bodied in my dreams. Maybe because I didn't know any other disabled people during this period (I was the only wheelchair user at both my primary school and secondary school), my subconscious still regarded me as an 'honorary' able-bodied person. It wasn't until I reached university and began living in a hostel with other wheelchair users that my dreams started to feature a disabled version of me. Nowadays I'm sometimes disabled in my dreams and sometimes able-bodied. It's good to have variety in life, I feel!

Thankfully, I hardly ever suffer terrifying dreams. A Travelodge survey last month suggested that more than a million British people regularly have nightmares with common themes including being chased, falling from a great height and being attacked by spiders. Apparently, Amy Winehouse is the celebrity most likely to appear in our nightmares. If I ever do have a dream in which I'm pursued by a spider and forced to jump off Beachy Head into the arms of Amy Winehouse, I'll let you know.

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