The Combat of Loneliness

A couple of weeks ago, I was walking past Waterstones in town when a book in the window display caught my eye. It was called The Insomnia Diaries: How I Learned to Sleep Again by Miranda Levy. I normally avoid books like these; 'how to' books tend to raise my anxiety levels, especially if I make every attempt to learn 'how to' do something and nothing happens. However, I am writing a book about my experiences with insomnia at the moment and I thought it would be good market research. It's really good to know what's out there and how what I go through is similar, or different from other people who write about it.

I've only read the first several pages so far, but this short paragraph struck me:

'Insomnia is a lonely condition. This isn't simply because you're awake when others are asleep, it's also because of what happens to the sleep-deprived brain.'

Yes, insomnia is lonely. How to explain to somebody who sleeps fine or even just reasonably ok what is really going on in that sleep-addled brain? I feel lonely because I don't know how to share - or not to share - this with others. I feel lonely because I don't know how to talk to people when I'm like this. I feel lonely because nobody reads this or responds to it. And I feel lonely because I lose a sense of myself, and coming back to myself when I'm low and sleep deprived is always the most important thing.

I'm in London at the moment (I brought my daughters here for a music course) and there’s something about being in big cities that makes me feel even lonelier. BUT. I was in a bookshop having a browse - being in close proximity to books or nature always calms me - and as I scanned the shelves, I noticed one of the people who worked there close by. You know that feeling when somebody radiates warmth? I really wanted to talk to her, but everything in my exhausted mind and body fought against it. I can’t do it, my mind told me. What would I even say? I have nothing to say. 

Incredible, really, that battle of wills that took place in a bookshop before I opened my mouth. But I forced myself to be courageous; to not believe that voice that told me I didn’t have it in me to speak. It might not sound like a big thing, but it is: to bend that brain circuitry and to force myself out of my invisible safety box. So I took a deep breath and I turned to her and asked the first thing that came into my head: What’s it like to work in a bookshop?

What ensued was a lovely fifteen minute conversation about books: her favourites, my favourites, her literature degree, my writing career. I really was not intending to buy a book this morning. My TBR pile at home is just ridiculous. But when she told me about her favourite book with such passion and enthusiasm, I wanted to read it. So I left with a book, and that’s fine. But more importantly than that, I left the shop with gratitude and a stronger sense of self: for being brave. For breaking down self-imposed barriers.

Searching for wild spaces in London

Back to the blog after a six year break

I've recently been reading over my old diaries at night. I'm up to my 2008 diary and have come to the point where Andy encourages me to start writing a blog to share what I go through with insomnia. Of course I do remember writing this blog, but honestly? I haven't thought about it for so long and it's a strange feeling to rediscover it again now. It feels a little like being reunited with an old friend. I've just gone down a rabbit hole, reading back over some of these posts and looking at the pictures of my children when they were little which are (especially to a mother) so adorable.

Six years on from the last post and am I still am insomniac mother? And what has changed, if anything? Yes, I do still have issues with my sleep and I know it would pain me to know that six years ago, or thirteen years ago when I first started writing this blog. But this is what it is. Sleep is a slippery eel - you think you've caught it and figured it all out, only for it to elude you once again.

But here's what is different: I no longer beat myself up about being a bad mother, wife or friend. I no longer apologise for not being able to do things. I'm more compassionate with myself and my relationship with my three children (now aged 15,13 & 10), who have never known their mother to not have insomnia, has morphed into something very special and they in turn, I believe, are growing into compassionate souls.

It's funny because recently I was thinking that I wanted somehow to document and share my journey with what I go through but I couldn't find a natural, comfortable space for it. But then this old blog turned up and yes, this is my natural space. For the past years it has felt too painful to talk about in a public arena, but what I'd like to say is this: if you know of anyone who struggles with sleep, please can you forward this link to them. It helps me to connect with others going through something similar and it will, I hope, help that person to not feel so alone, because long-term chronic insomnia can be desperately isolating.

Starting to share my experiences again now will be, I hope, a new chapter for me. Not in terms of my sleep suddenly miraculously improving, but in terms of more conversation and greater understanding around this radically misunderstood condition that can be brutal, sapping one's self-esteem and joie de vivre. I'm not seeking advice on how to sleep better (see the last post I wrote six years ago - nothing has changed on that front in the intervening years). But this is simply some honest words of sharing that I hope will reach others. Stay tuned.

A word of advice on advice

Who was it that said something along the lines of That which doesn't defeat you makes you stronger? Well, if this doesn't defeat me (which it won't), then I am going to be one seriously strong person at the other end of this.

It is very difficult for me to express on a 9-nights-in-a-row-without-sleep day the extent to which this affects me, everything about me: my self-esteem, my ability to relate to others, my emotional state of mind, my physical body and my mental health. In the past week, I decided to do something I really hadn't wanted to do, and that's to try a new anti-depressant. What's the big deal, you might ask. Well, there is a fear niggling at the back of my head that two years down the line I may be back in the same position and it will hit me even harder. But I have to try. When multiple sleeping pills don't work, you know you have to try something different.

But actually, the purpose of this blog is to write briefly about something quite specific. My therapist suggested that I gently and respectfully request of my family and friends to not give me advice. I do realise how difficult this is and I'm sure that if I were in a position watching someone dear to me suffer I would want to do something, anything, to help them. But you see, she feels that the only way I am going to get better is if I work through this thing (whatever it is) myself, without everybody's input, which will only confuse me further. I am very vulnerable right now and for some time have been jumping around, doing and trying lots and lots of different things. But for now, the new medication and the new therapist I'm seeing is enough. My wonderful grandmother's motto was KBO - Keep Buggering On. And that's all well and good and may work for some, chin up and al the rest (very British) but for me I have kept buggering on and on and on over the years, repressing many emotions and how I truly feel about things and this has been, I feel, to the detriment of my health. So I'm not going to KBO anymore, I am putting my hands up and I'm saying I'm not coping and I am on a journey to understand it, but it is likely to take some time.

And here's how I need your help. No more advice or suggestions, please. Instead, friends in Kenya: I need lots and lots of hugs, company, cups of tea and cake (preferably gluten free, but hey, I'm open to anything ;-)). English friends and family: phone calls, skype, text messages, emails, facebook messages etc etc, whatever your means of communication is. It might not feel like you are doing much, but just knowing there are people out there thinking of me and rooting for me actually makes a huge difference.

What's going on?

As I've said before, insomnia is pesky. In that, it doesn't go away easily.

This is nothing to do with positive thinking. I returned from England brimming with energy and enthusiasm and excited about putting everything I'd learned into practice and entering a new phase of my life whereby I could finally enjoy everything I've worked so hard to build: my relationships, my writing, my love of living. And the first week back was alright - it wasn't brilliant, but it was manageable. But what has happened this past week? As I type this, I have not slept for 7 nights in a row which as far as I can remember is a record for me. I feel as though I am stuck in the middle of a very long, truly terrifying nightmare and I don't know how to get out.

What door was it that I managed to unlock back in England? It is difficult to express how much I truly believed I had turned a corner. As I put it in the last blog, that something had 'lifted.' But just as quickly, that sensation has been smothered by severe, intense sleep deprivation. I feel as though I may be going a little mad. Two days ago I forgot which car was mine in the car park (yes, I know I shouldn't be driving) and stood there for some time whilst Benji looked up at me quizzically. In the end, my four year old son had to lead me to my car.

I really need your help please. I need you to phone me because I need to talk, even if it is just for me to blub down the phone. Because if I don't talk, in a way I just stop living. Just because I don't appear on skype, it doesn't necessarily mean I'm not there, it just means I'm on invisible mode. And this is my number: +254 (0)7179 13801.

My search for sleep

My search for sleep has taken me from grand consulting rooms in Harley Street to a Cypriot community centre in Wood Green, from a private hospital in Marylebone to a small, poorly heated room in Hendon. I have had ten appointments since I arrived in England ten days ago and wow, what a ten days it has been. I know that it is early days, and I know that my search for sleep has not necessarily come to an end for I shall always, I suspect, be a person who is 'nocturnally challenged' on some level. However, what I do know is that I feel like a different person from the woman who almost collapsed on to that airplane leaving Nairobi, too tired to even really grasp where I was going, or why.

It isn't about being in England, that much I can say for sure. My insomnia has doggedly followed me for years and it hasn't mattered where I was or even how I was feeling. I could never, ever find a pattern. I must confess I'm still fairly bemused that out of ten days back here only two nights have been bad. TWO. That's all. The last time I got this kind of uninterrupted sleep without sleeping pills, angst and a fair amount of tears was...well...a long time ago. The psychiatrist I saw last night commented that I have the opposite problem at the moment from a lot of people he sees - they don't know why they feel so awful (and that was me, just two weeks ago) but where I'm at now, I don't know why I feel so good. Well, in a way of course I know, it's because I'm sleeping. But why, after the most difficult months of my life, am I suddenly going to bed and dropping off without any great drama?

I don't have a definitive answer for that and there are, of course, a combination of factors at play (relief at addressing this, no caffeine, alcohol, tropical fruit (!) etc etc). But I really feel that something has shifted since I've been here. Perhaps a better word for it is that something that lifted. I'm back in control of this, taking small steps to change habits, what I put into my mouth, the trajectory of my thought patterns so that the dark beast that is insomnia has loosened its grip on me and I feel lighter than I have done in a long, long time.

I do believe I will get there. And I feel so fortunate to have so many people around me supporting me, a wall built up of family, friendship, love and care. It's been a grim period, but I'm out of the dark tunnel now. I feel positive and stronger than I've been in ages and I believe that by being here I've re-booted my system and I'm entering a new phase of my life. Alright, it may be a phase without coffee and wine which totally sucks, but if that's what it takes, that's what it takes ;-)

Thanks everyone for being here for me. Really, thank you.

Emotional (or not so emotional) clearings and naturoapths

My head is slightly spinning. So many suggestions, so many possibilities. To eat dairy or not to eat dairy? To eat gluten or just to exclude wheat? To have further blood tests / urine tests / stool tests / spit tests? Eeeeeeeek. Have I done appointment overkill??

I have just returned from seeing a naturopath who works to correct normal body function through natural means. She was adamant, and I mean uncategorically adamant, that I should exclude all dairy (except for thick cream and butter - great!), gluten, caffeine and alcohol from my diet. Contrast this with the lady I saw last night who works in functional medicine on the bio-chemical level who said that yoghurt was great (and I tend to eat a lot of yoghurt). "No," said the naturopath firmly. "Yoghurt is not fine. You don't know what goes in to it."

Ok. Deep breath. Anyway, let me tell you about my 'emotional clearing' yesterday which was led by a fifty year old lady who was a fireball of the most exuberant energy I've ever met. She kept laughing and telling funny little anecdotes whilst drinking coffee with cream, cinnamon and turmeric and telling me about her 'babies', two grey African parrots who her life 'revolves around' and that sleep in little tents at the end of her bed. She was a character, one of those people you don't forget in a hurry. One of the things I really liked about her was that she had clearly done her research and came armed with papers and analysed questionnaire results, all pertaining to me and my situation. She lives in a busy whirlwind, but she is a person who cares deeply about others and helping them.

We did my 'emotional clearing,' which is not as odd as it sounds, as essentially it was just talking about my life in considerable detail. 'Tell me your Once upon a time there was a baby called Rebecca, born to.....' story" she said. So I did. I talked and talked and told her everything whilst she listened. She would then think for a little while and then repeat it back, offering some analysis. She offered up some insights, asking if certain things resonated with me. But by the time we had got to the end of all this, I was utterly dry-eyed and unemotional and you know what, it just didn't feel relevant.

I have felt, more and more over the past months that there is something physically wrong with me. Of course the sustained insomnia has had a huge impact on my emotions and relationships but this has only come about as a result of the symptoms. I think I've told you all that there have been many nights when I've fallen into bed at the end of the day, utterly exhausted yet as soon as I am lying down, it feels almost as though somebody is prising my eyes open. Something has felt wrong inside.

I will talk you al through this in greater detail at some stage as she gave me a lot of information, but everything this lady said to me last night made SO MUCH SENSE. In a nutshell: When I had Maya, my adrenal glands were already stressed because of the Crohn's disease. Then add to that breastfeeding from an already depleted system, plus THREE rounds of that. All without taking any form of supplements to replenish myself. She even went as far as to say she has known of huge number of cases whereby babies born from mothers who are depleted in this way never sleep well as they are not receiving quite what they need. Anyway, all really interesting. She had a strong sense from the hours we were together that the insomnia, whilst possibly starting because of emotional issues, is not related to that now as I have dealt with my emotional demons from the past. She really felt that my ongoing insomnia is a result of my bio-chemical makeup and this is something that WILL NOT be picked up easily. She has put me on a whole host of supplements to replenish my beleaguered system. The naturopath also suggested I need monthly Vitamin B12 injections as she talked me through the dangers of B12 getting too low - pretty sobering stuff.

Wow. So much to think about. Am almost feeling I don't need the psychiatrist now...but maybe I should just go anyway to cover my bases. What do you think?

Bio-energetic Screening

This was...erm...bizarre. The first appointment, I have to say, that I didn't come out of feeling hugely confident about. I'm sure my mood contributed to this as I was shattered yesterday and at one point, the guy said he thought I had skepticism written all over my face. I told him that actually, it was just my knackered face.

Anyway, how to explain what I had done? I was there for over two hours but I have to say after two hours I was really none the wiser to what was going on. Bio-energetic screening works on the principle that every pathogen has a resonance and vibration and there is a machine called an Asyra which measures these vibrations whilst the patient holds two metal rods that are plugged into it. The vibrations are then fed digitally into a computerised chart of symptoms and from this, the practitioner can from this read where the imbalances are within the body. Are you with me? No? Well, I'm not sure I was quite following it either. It was all pretty wacky.

That being said, without mentioning to him that until recently I've been gorging on mangoes like there's no tomorrow (and the nutritionist told me I needed to largely stay away from), he picked up from his readings that I was 'sensitive' to mangoes. Again, I hadn't told him about my dairy free diet (which, I'm sure you'll be pleased to hear, I'm no longer following) and that I was drinking soya milk but he read that I am also intolerant to soya. So who knows, maybe there is something in all this? I may be skeptical, but that's not the same thing as disbelieving.

Another thing he read from the chart was that I had mercury toxicity in my system. He asked if I had any fillings. Do I have any fillings?? I have a whole mouth full of 'em. He said that over the years trace amounts of mercury leak from the fillings, poisoning my system, recommending I get them taken out and replaced with less damaging materials. O-kay. I'm not saying I do or don't believe that's true, but unless I have some more conclusive evidence that's linked to my insomnia, I'm certainly not rushing out to to the next natural dentist.

I'm waiting for his report because he's going to pull everything together and send it through to me so I can then decide what action I want to take. Might just leave that cavity pulling for another day though (lifetime?), I think I've had enough messing around with my teeth recently, thank you very much!