The Drugs Do Work…

…but they won’t give them to me.

Sleep disturbances are very common with HD. The somnolent effects of the mood stabilisers and anti psychotic drugs I take at night, seem to have worn off, annoyingly. I have spent the last few weeks tossing and turning or spinning which is how J described it before deciding to desert my super super king size bed in my cool bedroom in favour his boiling hot bottom bunk bed. One by one, for different reasons, members of my family have abandoned our mid range Warren Evans bed, leaving me cocooned on the far right hand side.

A asks me why I always sleep right at the edge of the bed when I’ve got so much space. J has also complained about me nicking the duvet as my husband used to.

I have an OT working with me to manage my fatigue. She has suggested various strategies…

To avoid making endless trips up and down stairs, I should gather everything I need from the top floor first thing in the morning. I should rest after each activity and use the tumble dryer instead of hanging the washing up on air dryers.

 

After the hoovering, time for a rest

None of this would be necessary if they gave me sleeping pills, as I have repeatedly requested. My neurologist prescribed Zopiclone when the melatonin he had suggested for my sleeplessness didn’t work.

It was hard enough getting that! In the end, I smuggled some in from the US. Although it is a natural sleep aids with no side effects, my GP said she wasn’t allowed to prescribe it. ‘It works so well everyone would want it.’

It’s available in the US without a prescription. I asked my American friend to send me some but I was disappointed to discover that I was the exception.

I need something stronger, but how to go about getting it? Dr B was shocked when I told her I self medicate with dope. This doesn’t send me to sleep but it does stop me fidgeting. It also makes the hours I spend beached on the sofa in the evening pass more enjoyably. When my brother visits we treat ourselves to ‘Big Brother’. He’s the only person I know who still watches it. D argues that it’s still an anthropological experiment. In spite of themselves, house-mates lose the super styled personae they come in with.

I’ve never watched a whole episode of ‘Love Island’ which seems unwholesome however stoned I am. They were talking about this ‘guilty pleasure’ on Radio 4 yesterday. The ‘bluffers guide’ on PM was typically patronising. The woman who devised ‘Come Dine with Me’ said ‘Love Island’ was post-modern. I was pleased to hear A had discussed it in the feminist club in her school but surprised to learn that all her friends are fans.

I’ve got an appointment with the GP on Tuesday. My carer is coming with me as I’m likely to be too tired to argue the case for sleeping pills. There has been a national debate about the over prescription of drugs. This might be why Dr B is reluctant to follow my neurologist’s advice. On the other hand, I sense that she is morally opposed to drugs. In the past, various doctors have suggested sleep hygiene techniques and relaxation tapes. But what if your sleep problem has a medical cause as mine clearly does? Avoiding screens in the evening has worked for A but not for me.

I keep thinking about valium –  a pharmaceutical comfort blanket. It would be good to have some in the cupboard for emergencies.

It’s sometimes hard to tell whether I’m longing for drugs to alleviate the tedium of being ill or to relieve suffering. Either way, I’m determined to take more the next time I go to a festival, although the MDMA I squirrelled away since the last big party we had here is probably past it’s sell date. In mid life, I find myself looking back regretfully at my reluctant hedonism. I was a student in Manchester during the summer of love in the late eighties, but I was far too busy arguing with people in the student union to risk embracing strangers in a sweaty nightclub. I went to the Hacienda but only on indie nights.

If my doctor won’t give me the pills, I have a back up plan born of sheer desperation. I have been asking around, to see if anyone could recommend a safe and reliable online pharmacy where I can buy sleeping pills. I can’t tell A though as she has seen what happens to people who buy drugs online on ‘Casualty’. I’m scared myself, but I can’t face more nights of spinning as the days are stolen away. I find myself shouting at the children, wishing my GP could see this scene, wondering if it would make any difference.

Any suggestions?

 

 

Words fail me

Reading for pleasure is my biggest challenge yet.

The speech and language OT who has been investigating my problems with reading signed me off last week. She did lots of tests.

I don’t have aphasia, which would be very unusual in HD in any case. I’d successfully completed my homework; to find a book I actually wanted to read. I chose Patrick Hamilton’s Hangover Square because it’s one of my brother’s favourite books. The pub scenes must have had the ring of truth. My parents met in ‘darkest Earls Court’ where the book is set, but 20 years later.I read it from cover to cover.

Like many people, my shelves are full of books I feel I should read. In my study, dauntingly, there are difficult books from floor to ceiling; Slavoj Zizek and Irigaray’s This Sex Which Is Not One and Primo Levi If This is a Man and Lacan’s Ecrit’s. The only light reading is Katie Price’s Pushed To the Limit, which makes everyone laugh when they see it, apart from the feminists.

The Unread

I think of myself as the type of person who reads philosophy over breakfast. But I busked my Critical Theory MA with the Fontana Modern Master’s series as my constant companion. I still feel like an intellectual fraud not an educated person, with some justification. My children were amused to discover how bad my O and A levels were but I was a teenage activist in the Thatcher era

Growing up in the eighties was terrible for my concentration. The time I spent at extra curricular political meetings and drinking with striking miners was bad for my grades but vital for the development of my revolutionary consciousness. My mother supported me until I went to a demo during school time and she started worrying about my future prospects.

These days, I want to read for pleasure not to polish my critical thinking skills. My mother read three books a week and my daughter has just finished The Midwich Cuckoos by John Wyndham. She loves dystopian fiction. We’re working up to The Handmaid’s Tale via a TV adaptation of Atwood’s feminist classic.

The OT has suggested that my reader’s block might be psychological and cognitive because it’s highly selective. We were amused to discover that my columnist’s ability to search and destroy my journalistic bête noirs is intact. I read and retained various confessional columnist’s entire oeuvres.  One in particular about someones boiler breaking down when the weather was bad, which was fixed as soon as the sun came out and the temperature rose again. I even remember where I was when I read that particular column.

In the past, I have always skim read everything to siphon off ideas. Or, as my husband says I read books for evidence to support my theories, rather than challenge them and there is some truth in that. I read so quickly – a hundred miles a minute – and it’s hard to get out of this habit.

I read Patrick Hamilton quickly but some of it went in. I tried to read with an open mind without rushing to critical judgment. As expected, the pub scenes were well drawn. I could picture my father propping up the bar and being endlessly tolerant of the rackety alcoholics. He is a good listener and always seemed to attract the people no one else would sit next to.

My friend has another explanation for my selective reader’s block. I might be jealous of good writers, particularly successful ones. This has the ring of truth. I’ve spent many disagreeable hours slagging off literary celebrities to anyone who would listen but I’m over that thankfully.