There have been so many instances over the course of my illness when I’ve found myself struggling with my sleep.
It always seems to be the first thing to go wrong when an episode of either mania or depression decide to strike, and has also been a problem more recently when trying to withdraw from the antipsychotic quetiapine.
So, it seems especially appropriate to be discussing sleep issues at the current time, and this morning I’m reviewing Miranda Levy’s book ‘The Insomnia Diaries’ which I read in two sittings and finished yesterday afternoon.
A cathartic benefit
I thought I’d had it rough with my own episodes of insomnia which have tormented me through so many of my bipolar manic and mixed states over the years, but after reading about Miranda’s horrifying experience, I’ve started to think again!
My own experience of sleeplessness pales into insignificance with that of Miranda’s, because in her insomnia crash, she didn’t get to sleep at all for a mammoth total of eight whole years!
Quite how she’s survived this torment without knocking herself out with a shovel (she did at one point resort to slapping herself in the face), is quite frankly, astonishing, but what’s even more remarkable is that she is able to recount the horror of it all with such a wonderful mixture of wit and humour – if you didn’t laugh, you’d cry I suppose – I’ve learnt this from my own horror story!
Reading her book brought a lot of my own traumatic experiences flooding back, but I have also taken great comfort from the fact that I’m not alone in my nightmare experience - so a big thank you to Miranda for courageously hanging on, learning so much, journaling it, and surviving long enough to finally tell the tale!
Story line
Miranda’s crash into insomnia was prompted when her husband unexpectedly announced that he wanted to call time on their marriage, one fateful day, back in the summer of 2010.
She subsequently experienced a bout of paralysing insomnia which would see her spend most of the next decade in a kind of sleep deprived oblivion; medicated on a cocktail of ineffective drugs, a witness to every movement on the street outside, and living in dread of hearing the first bird song which would confirm another endless night without sleep.
She terms her ten-year mission to get help and recover as a ‘psychiatric safari’, where she goes through a myriad of different treatments, medications, hospitalisations, and even rehab, to get off the failed prescription drugs and retrain her brain to sleep again without them.
“Two floors above, in the same building, lurked the doctor who had put me on the pills in the first place. The irony didn’t escape me.”
The book is an account of her unwavering determination to find a solution as she visits therapists, learns CBTi, and trials various different sleeping aids, which includes everything from: sleep robiotics and weighted blankets, to sleep wake lights, cannabidiol, mattresses and pillows.
The Insomnia Diaries brings together an extraordinary combination of real time diary entries, illustrated with factual information as well as excerpts from a wide range of medical sources and advice from professionals - at one point even including the thoughts and advice from a long-haul airline pilot!
Sleep meds - aaarrrggghhh
Recently, I have been writing about my own struggles with sleep as I try to withdraw from the antipsychotic quetiapine.
This parallels with Miranda’s story as she too (among a cocktail of other drugs) was prescribed the antipsychotic olanzapine which did nothing for her sleep yet made her balloon in weight - only adding to the complications, and making her life even more miserable.
Her battle to withdraw from that, as well as the class of sleeping pills known as ‘benzodiazepines’, features heavily in the book.
She also highlights the lack of support and treatment for those who are ‘dependent’ on these drugs rather than ‘addicted’ to them, and she discusses the importance of distinguishing between the two.
In my case my brain is ‘dependent’ on quetiapine because I can’t sleep without it, whereas I was ‘addicted’ to cigarettes for years because I had constant cravings for them – I have to say though, that getting off quetiapine has been much harder than quitting the fags and the approach to getting off both has been so different too.
The distinction between ‘addiction’ and ‘dependence’ is therefore important because there’s no way that Miranda should have ended up in rehab when trying to withdraw from sleeping medications - but that’s exactly what happened!
Later on in the story Miranda meets Melanie Davis, who is manager of the oldest specialist benzodiazepine service in London and her advice reinforces the dangers of prescription drugs. She says to Miranda:
“Go easy on yourself: it’s a tough old job coming off these drugs. Some clients who have also used other substances report that they are the hardest drugs to withdraw from.”
So, be warned before taking sleeping medications – there are lots of hidden dangers that come with them – thank you Miranda for highlighting all of this!
The guts to go against a doctor’s advice
As well as fighting the drugs that were purporting to help her, Miranda ended up having to fight the system as well, which, once again, sounds all too familiar to my own experience.
As a patient you are so often discredited (especially when it comes to psychiatry) because you are labelled as ‘mad’, ‘deranged’, and/or ‘irrational’ and as far as the psychiatrists are concerned, there’s no way you can possibly know what’s best for you.
This is an issue that I’ve battled with for years, and also one that Miranda comes up against in her own safari/nightmare/horror story. Her courage to be the ‘expert of herself’ and continue to find another solution is admirable, because it isn’t easy to go against the advice of a professional as I know only too well myself.
It is such a comfort to know that someone else has experienced these problems, it really, really is!
When Miranda finally makes it to the NHS sleep clinic (why didn’t they tell her about it years earlier?) she encounters this problem again, and even has to go against the doctors who don’t believe the extent of her insomnia when they say that she has:
“Significant sleep state misperception which often arises from a prior history of severe insomnia.”
I related so fully with the relief she experienced when one professional finally did believe her. She writes:
“Then I see a delightful Polish doctor who is the only medical professional to believe that I have not slept for eight years. I want to hug him.”
Enduring ridiculous instructions
I’ve mentioned the ridiculous advice that people have proffered over the years in some of my previous posts.
I’ve had everything from ‘get over it’ from close friends, to ‘try harder’ when actively suicidal from a member of staff, but perhaps the most ludicrous of all advice I’ve ever heard comes from a care coordinator in The Insomnia Diaries who instructs Miranda to:
“Accept you are never going to sleep again and move on.”
This reminds me of an incident involving a friend in a mental health crisis who was told to ‘make some toast and relax’.
Examples like this make you wonder – do these ‘professionals’ receive any training when they qualify in the field mental healthcare?!
“As the weeks go by, my medication dose is lowered. And every day, I feel worse and worse. I feel antsy, deranged. I can’t sit still, moving from place to place, room to room, running up and down the stairs. I can’t concentrate on my chores. I just can’t ‘be’ with myself. I believe the word for this state is ‘agitation’ but that doesn’t do it credit. It’s like an unbearable psychic itchiness.”
Rehab
The sections of the book that resonated most strongly were the admissions to both rehab and psych hospital where she discovers a chaotic and substandard system that does not facilitate her recovery in any way whatsoever.
When sharing her anguish over suicidal thoughts in rehab I was reminded of an incident in my care when I was abruptly informed that:
“We don’t allow talking about suicide here. We work on a three-strike policy. Two more and you’re out.”
Miranda’s experience when in rehab is so similar to my own. She writes:
“Before I know it, I am hauled upstairs to the staff room. It feels like I’m being summoned to the headmaster’s office. A committee of three interrogates me. They are not able to cope with suicidal people, they say, they may have to discharge me.”
These scenarios are so ridiculous that you couldn’t write it – but oh Miranda has, and so have I in my own (yet to publish) combined self-help and memoir, double decade, psychiatric horror story - watch this space!
Psychiatric hospital admission
“The ward is built alongside a railway line. I sit on the bed and stare out of the window at the yellowing sycamore leaves. Tube trains rattle past me till 1a.m then start again around 5. A light flickers overhead. Staff peak in all night long. They don’t make huge efforts to be quiet. It isn’t really conducive to sleep, which, if anyone remembers that far back, is the reason I’m in this bloody mess in the first place.”
The psychiatric hospital admission which comes after the disastrous rehab fiasco, also drew strong parallels to my own nightmare experience.
It helps so much to know that other people are prepared to voice their opinions relating to the appalling state of affairs in NHS mental healthcare.
I admire Miranda’s bravery for sharing her candid descriptions of the true reality of these places when she points out that:
“Therapy is non-existent, except of an ‘art room’ with three crayons and some plasticine. Sorry, I’m just not going there: I still have a tiny shred of self-respect. The nursing staff treat patients as an irritation. You actually see their eyes glazing over when you ask for help. They are more like jailers, really - and I only recall seeing a doctor once. He suggests I try to get a job “maybe in Tesco?”
How the hell is any of that going to make a talented editor/ journalist feel any better about themselves?!
The process alone is enough to drive even the sanest person insane!
Regaining confidence
The final part of the book that I found most helpful was the advice and references to rebuilding shattered confidence after a prolonged episode of insomnia or mental illness.
There is one particular scenario that stands out, when she goes to meet friends at a restaurant in the city and finds herself irrationally panicking and freaking out at Liverpool Street Station.
This is another part of mental recovery that isn’t sufficiently focussed on, and I am thankful to Miranda for highlighting it in her book. She writes in retrospection:
“But this incident revels that even though my recovery seems amazingly fast, for a while at least, it’s two steps forward and half a step back.”
This is so on-point with my own experience of ongoing recovery!
Self-analysis
I loved the self-analysis when she speaks about discovering an increased empathy and tolerance in her own character. This is so similar to my own experience because any prolonged and life-threatening illness always brings about a profound change - you realise that you don’t really need anything else except your health.
I would have loved to have seen more in terms of self-analysis throughout the book, especially when she does start sleeping again at the end of year eight – that’s the only, very mild criticism of an otherwise excellent and thorough, combined approach to documenting a prolonged experience of disabling insomnia.
Concluding thoughts
It can feel especially isolating when you go through a prolonged bout of any health crisis but especially so when it involves the brain. Non-sufferers always seem to think they know best when it comes to defeating a crisis, and that's why reading other people’s experiences can bring such comfort to the lives of those still affected.
The act of reading itself (bibliotherapy) has also been shown to have positive effects too, which I know is very much underestimated, since not one professional has ever suggested doing it in twenty years, yet reading is one of the best things I have ever discovered to aid my own mental health!
The last question that Miranda raises is deciding whether or not writing about, and revisiting her experiences is a cathartic help or a hindrance to moving forward.
This is something that I’m contemplating too, because continuing to revisit the horror of insomnia or illness means that it can start to become a self-fulfilling prophecy and I’m wondering if it might be best to break the cycle, close the chapter(s) and walk away for good…..
Perhaps not yet though… let’s see if I can help others first as Miranda has done through The Insomnia Diaries …. Come on publisher I’m ready now!
Finally, a massive well done to Miranda for surviving the horrors of a decade-long psychiatric nightmare - I know how bloody hard that is, and no one but another survivor would truly appreciate that so -
Thank you so much for sharing your thoughts and your wisdom with the rest of us – it is truly appreciated - Thank you!
Thanks for reading,
Speak to you soon,
TR
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