To sleep or not to sleep: that’s an insomniacs question

I have been sitting on this blog post literally since I started blogging 6 weeks ago.  I feel I have to/want to write a post about insomnia and my sleep journey however it’s a very very difficult topic to write about without me getting sucked into what has by far and away been the worse thing I’ve ever had the displeasure of experiencing. However, I’m hoping that if I do write this post that other sufferers will know that they’re not alone in this scary, insanity inducing sleepless world, and you never know I might be able to suggest something that you haven’t tried before.

Insomnia counting sheep

My insomnia journey started in January 2005.  We had just taken a long haul flight home from a holiday and I remember like it was yesterday turning to Mr P (my then boyfriend) and saying that I just couldn’t shake off the jet lag and I wondered why it was taking so long… I never did shake it off, but it wasn’t jet lag.

For about the first 6 months I just lived with it.  I could always get to sleep however I would wake up in the middle of the night and then no matter what I couldn’t get back to sleep. Looking back at my sleep diaries I think I was probably getting about 5 hours sleep at this time which although left me tired, very tired, was copeable (is that even a word?) and life did continue as normal.

By the end of 2005 however I was starting to struggle.  I went to the GP who wasn’t very supportive and prescribed sleeping pills however I didn’t want to go down that route as I wanted to solve my insomnia and not just plaster over it.  I read up on the internet and ticked off every sleep hygiene box:

  1. Exercise regularly but not just before bed
  2. Avoid napping during the day (no matter how tired)
  3. Avoid alcohol as much as possible (struggle with this one!)
  4. Avoid caffeine 4-6 hours before bed (I don’t actually drink tea or coffee so this wasn’t a problem)
  5. Block out all noise
  6. Don’t go to bed hungry or on a full stomach
    etc etc etc

I also at this time started doing acupuncture.  I had read up on insomnia and a lot of people had solved their sleeplessness with acupuncture so I went in with high hopes.  I saw a lovely man every week for a month or two but it just didn’t make a difference.  I think I would have continued for longer at this point but we were getting married in the April and my mother-in-law had been diagnosed with terminal cancer so I just didn’t feel I was in the right head space to be spending that much money on something that wasn’t working immediately.

I remember going on my Hen weekend in March 2006 with my friends and breaking down on them because I was just so tired.  This was the first time that I’d told anyone outside my family.  I hadn’t consciously kept it a secret but I didn’t want to be seen as a moaner saying how tired i was the whole time.  They felt the most important thing was that I wasn’t tired for my wedding so I went back to my GP who prescribed me 2 weeks of sleeping pills for the run up to my wedding.  I slept and it was amazing but I always knew it was a temporary stop gap.

The next few years are a bit of a blur as to when I did what but basically my sleep deteriorated further without a nights break.  I had my eldest in September 2007 and life was hard.  Having a newborn is hard enough without having to exist on 3 hours sleep a night and without napping during the day.  By this time we were trying more and more things to help me with my quest of saving my sanity:

  1. Hypnotherapy
  2. Acupuncture
  3. Chinese medicine
  4. Cranial osteopathy
  5. Magnesium tablets
  6. Melatonin tablets
  7. Increased exercise
  8. Nytol/herbal nytol
  9. New mattress (my old one was a Tempur mattress which made me very hot and staying cool is a big yes for sleep)
  10. Switch off all technology a few hours before bed
  11. Try to go to sleep and get up at the same time everyday
  12. Keeping a paper and pen next to my bed to write down my thoughts
  13. Keep a sleep, food and activity diary to see if I could find any pattern
  14. Changed my diet

I was becoming increasingly infuriated with my GP’s as well as I felt I had more knowledge than them and I was getting no help or referrals no matter how much I begged.

It also was continuing to get worse.  By October 2008 I was down to 45 minutes – 1 1/2 every night, every single night, week in, week out.  I then referred myself to the London Sleep Clinic on Harley Street.  It was here that I was taught about the insomnia technique of Sleep Restriction.  Basically I was only allowed to stay in bed for 5 hours a night.  I would go to bed at midnight and when I woke up if I couldn’t go back to sleep within a guestimated (as I wasn’t allowed a clock in the bedroom) 15 minutes I had to get up and do something relaxing (this is when I started sewing and crafting).  When I felt sleepy tired I could go back to bed however 15 guestimated minutes later up I got again until I felt sleepy tired and this continued until 5am when I wasn’t allowed back to bed and my day began.  As I never went back to sleep basically from 1am – 5am I was up and down like a yoyo which was beyond exhausting and such a very very lonely experience.

We found out I was pregnant with our daughter about 3 weeks into my sleep restriction training.  I had such hope and the doctor at the London Sleep Clinic had said that I should start seeing changes within a few weeks that I continued thinking that life would be improving very soon.  But it didn’t.  It just got worse.  Coping with insomnia is hard enough as it is however coping with insomnia and doing sleep training and being pregnant and having a toddler was beyond difficult.  I kept going and kept hoping until the April (I did sleep restriction for 15 weeks straight) when Mr P and my mother stepped in and said enough was enough.  I was sending myself insane with tiredness and it wasn’t fair on anyone.  We decided that while I was pregnant I was to get as much sleep and rest as possible even if it meant going against the rules.  I still didn’t nap during the day (as if I did I wouldn’t then get a minutes sleep at night) but I rested a lot and at night I would stay in bed reading rather than getting up.

I had also by this point found a GP who understood me and knew I wasn’t exaggerating and did her hardest to help find solutions.  My family and I saw her a few times to work out what we could do when our baby was born.  She researched sleeping pills that I could take while breast feeding so when my daughter was born we employed a Night Nanny who would work 4 nights a week and between her and my husband they would do all the night feeds while I slept in the spare room and took 14 nights worth of sleeping pills.  The first week it enabled me to get about 6 hours sleep a night and I was feeling a bit more sane and again I had hope that this is what my body needed to remember what it was like to sleep.  However by the 2nd week my body had got used to the sleeping pills and by night 14 it was only allowing me about 3 hours sleep.  I just couldn’t believe it.  I was on a seriously high dose of sleeping pills and even they didn’t work.  I then stumbled along with the help of family and a few pretty phenomenal friends and just about kept my head above water.  However, life with 2 children and getting no more than 90 minutes sleep every night just couldn’t continue.

My GP was continuing to be on my side and found a Psychiatrist at The Maudsley Hospital who focussed on sleep problems.  I was referred there and due to having such a young baby I was bumped to the top of the queue and therefore started seeing her in January 2010.  She agreed that the only way I was going to beat my sleep was to try sleep restriction again however this time she was going to arm me with some Cognitive Behavioural Therapy tricks to hopefully allow me to cope better.  I also realised that I had to do something with my mornings from 5am as staying on my own when the rest of the house was asleep wasn’t going to be good for me mentally so I signed up to do a Triathlon in June 2010.  So at 5am every morning I would either go for a run, cycle or go the gym and have a swim.  it was bonkers but it kept me going.  The mornings when I didn’t go made the day so much harder.  Somehow having this focus gave me a positive reason for being awake.  Again sleep restriction didn’t work and after about 6 months I stopped.  I just couldn’t cope.  I was becoming a bad mother who was too tired to do anything and that was making me so sad and depressed that it just wasn’t worth it.

So since January 2011 I’ve been taking anti-depressants.  My GP had done some research and found some that have a side effect of helping sleep.  They work.  I’m probably now averaging about 3-4 hours sleep a night and I’m coping.  I started on the lowest dose and after about 10 months they stopped working so my GP increased the dosage and they started working again.  I’m in a stage at the moment where I can tell that the dosage is wearing off and my body is getting too used to it as my sleep is deteriorating.  I’m wary about upping the dose again as the next dose is the highest dose and then what happens when they stop working – that just doesn’t bare thinking about.  My daughter is now 3 and so my big game plan is to get her to school and once she’s there I will start sleep restriction again as I will have more time in the day to cope without the kids.

There are two people who have, without fail, been my rocks – Mr P and my mother.  Their lives have had to change dramatically in order to help me and support me through the last nearly 8 years of hell.  My mother has cancelled plans at the drop of a hat to come and help me with my days and Mr P has basically had to hold the family together and stop it all breaking down.  He’s had to cope with his stressful job by day and his stressed wife by night.  He is beyond amazing and there are literally no words to describe how grateful I am and how much I love him.

Whoever invented sleep deprivation as a form of torture was spot on.  Suffering from insomnia isn’t about being tired constantly because although I am that somehow isn’t the hard bit.  It is how it affects my mental health that makes it so hard – it basically sends you insane. There is no other way to describe it.

And… breath.  Phew, I’ve written it and I’m still here and not crying 🙂  It’s been a long old road and I know there’s a long long way to go however I do believe I will become a better sleeper some day and I believe the only way to solve it is with sleep restriction technique  however I have to be mentally strong to start that again especially if it may well take up to or over a year to make a difference.

I’m going to have a quick read through now and then just press ‘publish’ otherwise I might chicken out.

If you are reading this and nodding your head as you’re going through the same thing or know someone who is, please get in touch – either in the comment box or via email.  Ask any questions and I’ll try and answer.  Also if anyone has any other advice please please fire away. You never know, there might be something out there that I haven’t tried and that might be my solution!

Here are a few websites that have helped me with my insomnia journey:

London Sleep Centre
Talk About Sleep
Insomnia Lane

Thank you so much for reading

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34 thoughts on “To sleep or not to sleep: that’s an insomniacs question

  1. I can’t believe you’ve been through all this. Having four kids, I know what sleep deprivation did to me and that was without suffering from insomnia so I can only imagine how dreadful this must be for you and your family.
    I’m really glad you shared this and hope you feel better for doing so – you never know who you may connect with who could have some answers for you. I really hope you find some solutions soon xx

    • Thanks so much my love. I’m actually shaking now that I’ve pressed publish. So personal!! I’m glad I’ve done it though. That’s what I’m hoping is that someone may be able to share their story and give me hope or even some more things to try. Can’t wait to meet you on Wednesday xxx

  2. Well done for writing this, you’re very brave.

    I can’t even begin to imagine how difficult it is for you to cope with insomnia. As a person who needs sleep to cope, I don’t know how you do it! You’ve done a brilliant job of coping and raising your kids too.

    I really hope in the future they can cure your insomnia and you can begin to sleep again x

  3. And yet, despite all this awful, insanity-inducing insomnia, you are such an incredibly generous, kind and strong person, and such a supportive, loyal and loving friend, that you have not only allowed, but have *encouraged* me to cry on your shoulder about my broken nights of sleep caused by nothing more than my 3 children. Which is why you are such the superstar that you are, and are loved so much by me and all those around you. Well done on a brilliant, courageous post. Xxxx

  4. A really compelling. brilliantly written blog. I can’t believe what you’ve been through and I hope publishing the blog opens up some new solutions. Well done for holding it all together and for still being such good company!

  5. Thank you for writng this Sally. Even if you didn’t cry writing it I cried reading it. I too have suffered from insomnia and know how awful it is. I am ‘fortunate’ that mine comes and goes but when it’s here it is awful and coping with being a working mum is all too much to bear. I hope you find something that works for you very soon. You may not know it but you are coping and extremely well Xx

  6. Sally, we barely touched on this on Friday, but I hadn’t realised it had reached this epic level. Let me know if we can do anything; even just feeding the kids if you want a break. X

  7. I can’t imagine the hell that you’ve gone through for the last 8 years. I remember the nights with a newborn and only 90 minutes sleep and those were bad enough – but they only lasted a few weeks. I’m in awe of your strength at surviving that experience for so much longer. I’m awful without sleep and, due to work, I only get around 5 hours sleep a night. It makes me irritable, stressed, unable to keep things in perspective. But I know it’s not forever and I know I won’t be able to keep up with that lack of sleep. I will never moan about it again though – not now I know what others go through. Blimey, you’re one strong lady. xxx

    • Thank you so much for your kind words. Please please don’t think you can’t moan about being tired because we are all different and in our own way we are all tired and we all need to be heard. I hope you can start getting more sleep soon x

  8. I am in tears. So touching.

    I literally can’t function without sleep, I think you might take over the world if you got a full a night’s sleep!!! I pray it will suddenly happen for you…
    xxxxxxxxxxxxxx

  9. I saw your post on the East Dulwich Forum and cannot believe that after what you’ve been through you are able to write so well and lucidly! Thanks for posting this. I hope you’ll allow me to offer a couple of thoughts, just in case they are in any way of any use.
    I’ve suffered insomnia at a couple of points in my life (though certainly not for a period akin to yours). The first time was when I was suffering from extreme anxiety, and panic-attacking ridiculously regularly. The second was when I had post-natal depression. I think it doesn’t always help to think of things directionally; it’s all iterative; but I can say that when the anxiety was tackled (through CBT specifically for this) and when the postnatal depression was alleviated (through time, basically), the insomnia improved dramatically. That makes me wonder: might it be worth tackling anxiety and depression IN AND OF THEMSELVES and seeing whether this has some effect on the whole system of your being? Not necessarily making any assumptions about what came first, but just intervening from that angle? My CBT explicitly for anxiety was excellent, and armed me with strategies which I still apply, years later, and which I applied when I was PN depressed and on a long waiting list for help!
    Thanks again for your honesty and the insight into your life here.
    P.S. I’m really sorry; I’m going to put a fake email address and name to allow me to post this. I’m not as brave as you in going public.

    • Thank you so so much for commenting (please pm me on EDF if you want). Yes I totally get where you are coming from and my lovely psych at the Maudsley is treating me with CBT for everything however it seems that my insomnia has led to me being depressed rather than the other way round and we can find any starting factor …. yet.
      I really really appreciate you taking the time out to write – thank you.

      • Best of luck with it all; I really mean it – it’s a massive testament to you that you can raise your children, write so well, and create such lovely things with this going on; truely amazing.

  10. Pebbles, I’m so glad you posted this as I know it must be something that affects everything in your life. This really moved me. You are so strong and I know you must have some dark moments, but you still manage to be an amazing mum, wife and friend (I gather this from some of the other comments). I really, truly hope this gets resolved for you. x

  11. My lovely girl this is one of the moving, thought provoking, brave blogs I have read, made even more real in knowing you and having been through the birth of our children together. It also fills me with huge regret that I didn’t know the extent of your insomnia or even that you had it at all until far too long into our friendship, as you were always so mindful of not discussing it with your ‘newborn’ buddies whilst we were all complaining of being so tired ourselves. I wish I had known more. I couldn’t put it more eloquently than Lou: you truly are a wonderful person and a fantastic friend and so smiley and magnetic to be around, so eager to listen to and help others. Thank you for writing this and thank you for being the friend that you are x x x

  12. I can’t believe it’s that bad, how awful for you. I suffered a bit when I was pg but not nearly as bad as this. I’m glad your GP has taken you seriously. It does sound like torture but you have found great ways to cope with it. And yay for Mr and Mummy P 🙂

  13. What a heartfelt and honest blog about insomnia……I have suffered bouts of this now and again (the fear being I never know when it’s going to strike next) and I know how delibitating this can be on those periods. However I say periods as this is all I have suffered so I literally take my hat off to you having endured eight years. The words ‘that sucks’ is a complete understatement I just hope that something comes your way to change this pattern and I am no medical expert so I have nothing worthwhile to suggest other than what you know already – regular sleep times/ exercise/ no alcohol/ caffiene blah bah blah and obviously this does not work in all cases. I really hope something comes your way but on the upside your work is hugely positive and lovely and that is something to be proud of so well done you. Oh an did I mention the small feat of raising two beautiful children, running a household and being a loving wife?!!! hats off lady I raise one child, keep a good house and work inbetween….and still feel I have my work cut out! hang head in shame me thinks! you will get there and know you have a wonderful family and circle of friends they may not make up for lack of sleep but they will fill in the gaps…well done you xx

  14. Hi Sally, firstly sorry to hear of your long standing ordeal with insomnia. It’s a hard and horrible beast to break. I’ve had insomnia on and off for the past 20 years and it does leave you feeling like you are hallucinating after a while. You are a trooper for doing what you do and still being so lucid.

    Secondly, congratulations for the bravery it took to share it and thank you. Fate being fate, I have just been reading another post on a blog which made me think of you and so I thought to share it in case there is anything helpful to you in it
    http://www.thesilverpen.com/page/11/

    Keep well and I really hope you find something soon to make your nights more sweet and blissful xx

    • Thank you so much for sharing the link – i’ll go and look now.
      I’m so sorry that you too suffer from this horrendous illness 😦 I hope you cope as well as possible and that you have support.
      You’re lovely
      xxx

  15. And you keep smiling. That’s what amazes me the most. Despite all of this, you are a generous, kind and thoughtful person. Truly awesome.

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