One of the ironic things about CFS/ME is it makes you very tired, but unable to sleep. It’s very frustrating. I always think if I could sleep a bit better maybe I’d feel a bit better. But getting a good night’s sleep has always been difficult for me at the best of times; I’ve always been a bit of an insomniac. And since developing CFS/ME things have only got worse.
This is one of the most common symptoms of CFS/ME. And in some people it can become so problematic that they have ‘sleep reversal’ which essentially means they go to sleep in the early morning and wake up in the afternoon/evening. Fortunately I’m still on the same time as everyone else, but I could see how sleep reversal might happen. You go to bed later and later because you can’t sleep. Until one day you’re going to bed when everyone else is getting up.
I’ve always been pretty good with ‘sleep hygiene’ so just putting that back in place was the first thing I did. Sleep hygiene is just a series of things that you can do to help promote good healthy sleep. For example not reading or using a phone/computer whilst in bed – keep your bed for sleeping in. If you do things in bed where your brain is active, your brain gets confused and doesn’t realise that it should be turning off when you are in bed. Also, not drinking anything with caffeine in after six o’clock. Not eating your evening meal too late. Not using a computer in the hour before you go to bed (I’m really bad at this). Going to bed at the same time and getting up at the same time are also really important. I really like reading in bed, but I know if I do it regularly my sleep suffers, so I try to just do it very occasionally and randomly, and that seems ok.
So having put all the sleep hygiene measures into practice I still couldn’t sleep. Lying in bed absolutely shattered but unable to sleep is very annoying and distressing. You know you need sleep, but it just doesn’t happen. I talked to my doctor about it and as most doctors aren’t keen on prescribing sleeping tablets (they are generally addictive) she suggested I try taking some paracetamol before bed. For a while that helped, but the effect seemed to wear off. Next I tried taking chlorphenamine (Piriton) which is an antihistamine for treating hayfever and other allergic reactions. It has a side effect of being very sedating. And I did find it helpful for a while. In the end I started taking low dose amitriptyline, which is an antidepressant, but at low doses is useful for treating nerve pain and is also very sedating, so it is recommended for treating the sleep issues involved in CFS/ME. In fact it is considered the most effective way of dealing with the CFS/ME sleep issues. It makes me quite drowsy in the mornings, but I’m pretty drowsy anyway, so it’s difficult to know how much is the amitriptyline and how much is me. But the main thing is I sleep, often pretty well. The sedative effect does seem to have reduced with time, but it’s still effective enough to mean I get a decent night’s sleep for five out of seven nights.
The other thing that has been very effective for me is Cranial Osteopathy. This has given me a dramatic improvement in my sleep patterns. It has helped me immensely, although the effect does wear off a bit a few weeks after treatment.
The final thing that I have noticed is quite subtle. If I do too much I sleep badly and if I do too little I also sleep badly. I need to make myself tired, but not overdo it. This is an extremely hard balance to strike. In terms of my post about Energy Budgeting I need to spend all the money available to me exactly, with nothing or just one pound left over. If I am overdrawn I’ve overdone it and will have trouble sleeping. I’m slowly getting better at this balancing act, now that I am aware of it, but it’s not an easy thing to achieve.
‘[Sleep is] the golden chain that ties health and our bodies together.’ - Thomas Dekker
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