Friday, 16 October 2009

Stuck Insomnia

Since I last reported in I am still a touch under the weather. It is because the ‘not-too-awful-in –itself’ cold is still lurking and so causing a few lupus flare ‘warning sign’ symptoms, but my medication has been adjusted and thankfully seems to be containing things on the whole. However, an old bugaboo has reappeared: insomnia. In the past I have suffered badly with insomnia and really struggled to get on top of it. Thankfully this time it just seems to be the odd night here and there, but its reappearance is an unwelcome reminder of past experience.

Insomnia comes in different shapes and forms from periodic wakefulness, difficulty falling asleep or waking too early. For me it is a case of waking up at a very particular unearthly hour (currently 3.00am) almost as if I had a built-in alarm clock and being unable to sleep for the rest of the night until it is just about time for the real alarm clock to go off again – grrrr. When ‘Tyler Durden’, the unhinged antagonist of the film Fight Club, says “when you have insomnia, you’re never really asleep and you are never really awake” I believe he hits the nail right on the head!

Insomnia can be attributed to a number of individual things or a combination of them. To start with it is arguably a symptom of lupus itself. So yes, the inability to get nourishing sleep in a disease where one of the key features is lethargy, exhaustion and fatigue is yet another of its cruel paradoxes! Insomnia can also be a side-effect of medications taken to control the disease, Prednisolone in particular. It is probably no coincidence that my recent disturbed nights coincided with an increase in my steroid dose. I often find that this happens when my dose is increased, but that I gradually adjust to it and my sleeping pattern begins to settle again. Other possible causes of insomnia are anxiety, stress and depression which are not uncommon amongst loopies, as again they can be either symptoms of the disease itself or natural psychological responses to it. Whatever is at the root of it, it is something that seems to give grief to a lot of loopies.

I have thoroughly explored the whole gambit of practical and behavioral solutions all of which play an important part in helping ease the problem all of which help to some extent or another.

At the top of my list is (you won’t be surprised to hear!) is yoga. Because it is a holistic discipline it works on balancing all the bodies systems, so whether the insomnia has physical, mental or emotional origins it can effectively be used to prepare the body and mind for healthy sleep. To achieve this there are a number of yogic ‘tools’ that can help. These include physical postures (known as ‘asana’), breathing exercises (‘pranayama’) and meditation. I promise I will write in greater detail on ‘Yoga and Lupus’ soon, but in the meantime all I can say is find yourself a good yoga teacher now, and you will discover the benefits for yourself which will become apparent almost immediately …

Beyond this there are some other well documented ‘tried and tested’ things to do and others to avoid that I find help including: using warming aromatherapy baths / lighting aromatherapy burners / candles (my immeasurably kind Mum recently bought me Molton Brown’sCedrus Temple Soother’ and ‘Cedrus Room Aroma Rocks’ both part of their new ‘Sleep Body Therapies’ range which I have found good:, comfy bedding and a slightly open window as I find fresh air helps enormously so long as I’m not cold, avoiding overdoing it with alcohol and caffeine (doable so long as I’m allowed my morning cuppa!) and doing something to clear and relax my mind just before I put my head down, for example relaxing breathing exercises, reading a chapter of a good book or flicking through a magazine (but avoiding anything that might be disturbing or challenging as these can awake the mind which is a bad idea before bed). And, as sad as it might sound in a ‘New Agey’ kind of way, I have also got a Sea CD (ie a CD recording of sea waves that the manufacturer describes as “timeless, rhythmical and ultimately soothing”: that at times has been effective in helping lull me off to sleep by kidding me I’m lying on a beach somewhere very nice and far, far away!

However, ultimately the thing I possibly find most useful is the thing that seems to be key to most aspects of Living Well with Lupus – that is ‘wrapping your head around it’ which is to modify the thoughts and perceptions I have about it.

I once had a session with a Cognitive Behavioral Therapist from which the most useful thing to emerge was learning how to challenge and actively modify some of my thoughts and concerns about insomnia. It was pointed out that the significance of worrying about sleep (or lack of!) is part of the problem and makes the whole thing a damn sight worse.

For example, when I explained “I’ve always needed a lot of sleep. If I don’t get at least 8 hours, I just don’t function” I was invited to question this belief. I had to confess it was possible that the amount of sleep we need might vary from time to time, and that there have been lots of days when I’ve surprised myself and managed to get by successfully in spite of a bad night’s sleep. Acceptance is also key (and very yogic!). I learned not to allow myself to spiral into negativity on those occasions I can’t sleep, instead I think “OK, I’m not sleeping right now so I’ll get up and make myself a chamomile tea and enjoy some time for myself. Maybe I’ll do some yoga relaxation”. Another helpful thought I now have is “as I’m a restless tonight that usually means I’ll get an extra good night tomorrow night- excellent”.

I also used to avoid daytime napping in the false belief that by not sleeping in the day I’d sleep better that night. I have now learnt it doesn’t work that way. Sleep is like money in the bank: you should add credit whenever possible so there are extra supplies for ‘rainy days’. So now if the opportunity for an afternoon nap arises I try and take it without guilt or concern.

After all, as the comedian Carrie Snow pointed out “No day is so bad it can't be fixed with a nap!

Wishing you all a 'bon nuit' x


janet said...

It helps to know ,(although you certainly wouldn't wish it on them),that there are others awake at 3;00am not quite awake and not quite asleep..........
What i find refreshing about your blog is that it is very practical and positive and interesting. So many American sites just go on and on about their symptoms and misdiagnosis, so boring.Not good reading at 3:00am. And no i don't recommend reading them at that time, such a bad habit but I definitely second your thoughts on getting your head around it and readjusting your life. I now sleep when i can and get up when I can't. Simple.......when you are a student and live on your own like me.......I work on Janet Time now.Not so simple for other women though. Take Care Janet,

Poodle Soup said...

Hi Daisy,
Yes I know your insomnia pain!! Am currently on 35mg of Prednsione (going down each week though!) and it does keep me awake at night, luckily I can nap during the day with my baby :)
Your insomina may also be triggered by your pregnancy, its very common during the first and 3rd trimester to have pregnancy insomnia.
Hoping you get some quality shut eye this week!!

Leslie said...

I'm on week 2 of my dosage of prednisone... 20 mg/twice a day. I've noticed that I'm up and wide awake more than usual too. I started a yoga/pilates class yesterday because my mom thought it would keep my joints and muscles loose. The yoga was actually pretty therapeutic!The pilates kinda hurt LOL. I'm gonna try to stick with it. Maybe it will cure the insomnia too.

Daisy Seale-Barnes said...

Hey guys.

Nice to hear from you all.

You are right Janet, it's nice to know we're in good company when we are stuck awake in the depths of night! Glad you are enjoying blog.

Hi V, I am glad to hear the steroids are coming down gradually - I find sleep improves when I get below 15mg so keep going. Are your symptoms continuing to improve?

It seems there are a lot of things that 'could be lupus, could be pregnancy' ... difficult to know what's what!

Leslie, I was really pleased to hear you have started yoga. Your Mum's right - it really helps with the joints and is great for keeping you nice and chilled to stay on top of things. Haven't tried Pilates properly ... sounds like it might be a bit painful though! Look after yourself.

Daisy x

Poodle Soup said...

Thank Daisy!! Yeh my symptoms have improved dramatically!! On my last chemo session next month and getting lower and lower on the steriods, plus the Lupus is now in remisssion with no signs of it or my Sjorens in my bloodwork. Yipppee!!
Hope you are getting some nice sleep :)Hang in there with those dry eyes (just read your latest post) I had really dry eyes and mouth for ears and it disappeard one day and hasnt come back since, Sjorens can come and go so there is still hope for your contact lenses!! Ive also read that after pregnancy it can sometimes "cure Sjorens", Im not sure about cures but since I gave birth my Sjorens symptoms have dissapeared.
Take care

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