Be reassured by the fact that I’m writing this blog. It means that I have had some sleep.

I know, yawn. Who isn’t tired? I know I dedicated an entire blog to the topic earlier so I won’t harp on.

However in this case I mean for three consecutive nights – yup, three – I have had no sleep. Zero. Null. My car has been at the train station since Tuesday, I got back from London on Wednesday but have not had confidence in my ability to drive safely since then 😐 Hopefully now you’ve got the picture.

Anyway, as the situation was of my own making, I’m not after your sympathy (although a lift into town tomorrow or Monday would be appreciated 😂), I’m just sharing another lesson with you. In case it helps, or in case it amuses you, both are good.

Hopefully you are much wiser than me and won’t make the same mistake three times. I know. Three. It’s a theme.

For the last 11 months, I have been reliant on a drug called Lorazepam to get me to sleep at night. It works. The thing is, you’re only supposed to use it for a short period of time. It’s a controlled drug, and to be fair to the GP she has mentioned every time I’ve seen her that I need to be careful but I have, in convincing terms, assured her each time that there is no fear of me becoming addicted to the substance.

I still don’t think there is, but I was definitely dependent on it and this I had not acknowledged, thinking myself stronger than any drug. I’m not and nor do any of us need to be.

It’s not a contest, it’s about understanding drugs and treating them with the respect they deserve. I know that now and I share this with you so you will know it too, in case you ever find yourself here, dependent on a drug to sleep and trying to compete with it.

As is often the way in medicine, no-one explained to me that I would’ve been better off with a weaker and longer acting alternative such as Temazepam nor did they explain exactly how extreme it is going cold turkey when you have developed a dependence on such a powerful drug.

Unfortunately, the psychiatrist who treated me last year lost my trust quickly with her approach to drugs and other matters. She was ‘disappointed’ when I gently took myself off anti-depressants over a few weeks – you see, I can do it the right way – which horrified me. Disappointed? Concerned perhaps, keen to ensure I have other tools in place to manage this illness, but not disappointed. We never spoke again after this conversation.

I know I’m not alone in having difficulties getting to sleep. I’ve always had problems on and off but last November, when the nurse asked me if I needed help sleeping, I was desperate. I was terrified to go to sleep. I knew something life-threatening was growing inside me and none of us had any idea how the months ahead would treat me, what the outcome would be and what these experiences would be like.

As you know, I was right to be wary and I would have struggled without the assistance of this drug.

However, partly because so many other big things are at play, doctors seem to leave this sleep dysfunction alone when really as a patient you should be focused on developing healthy sleep routines so that gradually it is possible to lose the dependence as these drugs are not good for anyone over the long-term. Part of what makes them useful is their ability to create short-term memory loss which is clearly not helpful as a routine.

So it was out of concern (valid) that my driving early in the morning would be impacted by my taking of the drug too late at night that I skipped my dose on Monday.

I slept a couple of hours and felt quite exhausted.

I was not prepared for the next night. Believing my power of thought and my body to be capable of such control, I felt could continue now to do without. I did not sleep at all. Not only that but every time I shut my eyes on Tuesday night, I experienced a night terror, a series of short nightmares which I presume were created in a state of semi-consciousness and which were deeply unpleasant. The next two days were full of medical treatments and appointments so I had to keep functioning. The withdrawal symptoms continued (the terrors thankfully ceased) and yesterday after some more research I concluded that it was not too late to try to introduce this change to my brain gradually by way of the alternative drug Temazepam. I won’t bore you with how it all works but feel free to ask and yes, I have a lot of drugs in my cabinet at the moment. No, they are not for sale 😉.

The good news is, it does work and I will now patiently and gradually and hopefully painlessly reduce my dependence and be free of the sleeping pills in the next few weeks.

The desire to have more control and not rely on a drug is strong but of course nonsensical given my reliance on drugs to stay alive and my need to manage a number of side effects. This conflict intrigues me. I suspect it goes back a long way. I never took such drugs as a young person as I did not wish to lose control of my brain. My relationship with alcohol over the years has been interesting. Like these drugs, small quantities have enabled me to relax (something I struggle with) but larger quantities have left me feeling over-exposed and more vulnerable. I gave up drinking in February, not for these reasons but I do prefer life without it. I have watched as alcohol has ruined my mother – who is tragically entirely and irrevocably dependent on it – and I wonder if we treated it in the same way we treat other controlled drugs, whether fewer people would see their lives swallowed up by it. A discussion for another day, perhaps.

Embarrassingly this isn’t the first time I’ve thought myself stronger than the drug. Late last year in the middle of chemotherapy I found the steroids were keeping me awake for days so instead of following medical advice to titrate the dose, again I just stopped the medication.

The resultant nausea was so unpleasant, it created the same sleepless experience that I had had with the drugs but much much worse. You would think I learned that lesson there and then, but no.

After surgery in May, having eschewed steroids and morphine as my reactions to them were extreme, I made the most of a drug that I could dispense at will largely because the machine which dispensed it directly into my veins made a sound like a small rabbit sawing wood. 🐰I can guarantee that is the most ridiculous reason for taking a drug you have ever heard and if it isn’t, please let me know.

Anyway I indulged myself given what I have just been through (and oblivious though I was, the positive high I was getting from the drugs) and refused the laxatives I was offered because I thought my body, having not needed laxatives (quite the contrary) since January would not react in this way 🙄. Once again I felt I was stronger than these drugs.

Will it surprise you to learn that I wasn’t? I ended up with the nurse at my (very sweaty) side talking to my consultant through the locked door of my bathroom as I experienced side-effects I would not wish on my worst enemy. My poor body, I really should stop putting it through this when it can be avoided.

So, back to this week; the fact that once again I thought I was much stronger than anyone else taking this drug before me and that I could ride the symptoms to clean myself of it in no time, is embarrassing to say the least and really quite ridiculous at worst.

As I say the good news is, I have capitulated. I will come off these sleeping pills, but I will do it gradually, continuing to build my mental strength, putting a routine in place and taking small quantities of a less powerful drug to gradually wean myself off it.

The thing is, there’s no ‘safe’ time to come off it. I can’t guarantee that I’m not going to experience more frightening things in future, but I am determined to work on how I deal with that fear. Largely because it is a fear that we all have and sort of makes no sense to fear death. Yup. That word again. Don’t be unsettled.

I joked earlier this week that I now spend several hours a day, philosophising and reconciling the concept of life as a finite experience. It’s hard for everyone else to catch up. I’m trying to convey what I learn, in the hope it helps all of us with a very tricky thing.

My eldest dog and closest friend, Filou, Will be 12 in a few weeks. As a Spaniel, this means she is well into old age (84 in dog years). She’s fit and healthy but as with us all, this could change and any time. My dear friend is currently dealing with exactly this with one of her beloved pets.

As humans we get ourselves into this terrible trap with pets. We know their life expectancy is much shorter than our own so we actively fall in love with a creature who is almost guaranteed to die before us or mourn us for the rest of their days. It’s brutal. Why do we do it? Because, it’s not about time on this Earth. It’s about what you do in that time and how strongly you love. My dog has always looked to me like ‘a heart on legs’. She has no idea how long she has and how much happier we would be if we were blind to this reality also. She just loves, lives and steals sandwiches as though everyday were the only day, not her last. My illness has impacted her significantly. She worries about me, so we go on walks (she often needs encouragement to leave the house) so she can forget to worry and be carefree. It works but she won’t stop loving no matter how much it worries her. The gain outweighs the pain.

The pain of loss is proportional to the value of what we have lost – how much we loved. We will all, without fail, experience loss as life is designed this way. Those who have lived make room for others to be born. It has always been this way and we can’t change it. So when we race along, missing opportunities to connect, we are foolish. This is everything that life is about. It’s why we were given life and how we must use it if we want to be truly happy.

The beloved American actor Gilda Radner (no, I hadn’t heard of her either until Gene Wilder died, she existed on US TV in a time before the internet) was asked about her motivation. Love was her answer.

In the course of this year, I’ve lamented the fact that I have never found the romantic love I long for.

The thing is I was wrong. I have found it many times and the love is still in my heart after all these years. All of it. I know, bonkers right! I have never loved and lost. Only loved. How fortunate I have been. I’ve had to dive in each time and embrace it, then suffer pain on the way out. This is one withdrawal exercise I’m not afraid to repeat.

I’ve searched in vain for the love I thought I hadn’t found and worried that I’ve chosen the wrong path, missed the boat. No.

I chose my path, I still choose my path and my motivation? To impact as many people’s lives positively as I can. I don’t always get it right and people will get upset along the way – your chosen path might not always make you popular – but my motivation has always been the same.

Only last night, watching clips of Gilda, I got it. At its heart, it’s love. Stay motivated by love and channel your heart into everything you do. Fight for what you think is right, be true to yourself and love. Maybe you’ve never been truly in love in a romantic sense but who cares. You are loved. You love. It is all around you.

Never have I felt that more than this year. Friends I have known for only months have cared for me like their own, have made time, have opened their lives to share them. Old friends have been strong, made me feel normal, whole, helped me understand that I’m still inside here, yet stronger than before and that I still have work to do. Thank you all for making me feel like a ‘love billionaire’.

Gilda Radner loved and laughed and shared until the end. She experienced her own pain in her lifetime but it only further fuelled her passion. I intend to become mildly obsessed with her for a short while as I focus on continuing to practise what I have always preached.

Life is short. We cannot change that. Consider each soul you encounter to be pure of intent (until they prove otherwise, there are some dangers out there), fill your heart with love and enjoy every moment you can. Your passion for living will infect others and they will thank you for it. I promise 😘.