The sleep paradox. I do not sleep well at night yet cannot keep my eyes open during the day.
So, do I not sleep at night because I sleep during the day? No. From the time my wonderful wife gets up until around midday (or later) I find it almost impossible to keep my eyes open, no matter what you might threaten me with!
To try and stay awake I will play a movie…..and have to restart it at least half a dozen times because I keep nodding off. Even loud action movies.
So what is the difference? At night when I am lying next to the most wonderful, selfless, caring and beautiful woman in the world it is completely quiet. This enables me to hear clearly the loud ringing tinitis in my ears, and exquisitely feel the pain all over my body (even with prescribed pain medication). It makes sleep very difficult, so I lie here and try to rest, and wait until morning when noises begin and sleep can come my way through distraction.
The accompanying picture to this post is almost accurate as the red parts indicate where my chronic and extreme pain is in my body. The only error is that it is not all in red, as my pain is everywhere. Even my skin is so sensitive that when it touches the bed sheets I get an extra ‘kick’ of pain.
I do realise that there are millions of people worse off than myself, yet unfortunately that thought is little comfort in the middle of the night when I cannot even touch my wife, as the extra pain is too much to bear.
So what is the point of writing all this, apart from ‘poor me’?
To the 90 per cent of doctors who do not know anything about, or indeed believe in Fibromyalgia, ME or CFS (Chronic Fatigue Syndrome) I suggest some light reading as the research into these conditions increases daily. Just because you do not know what your patient is suffering from is no reason to simply prescribe some pain medication and recommend the three old faithfuls of – ‘get more sleep, eat healthier and exercise regularly’. This seems to be their mantra for any condition unknown to them.
If I tried to exercise I would crash within the first minute and take weeks to recover, so no thanks. Your 10-15 minute appointments that are meant to somehow allow enough time to diagnose every conceivable condition are a joke, as no-one can diagnose accurately more than 60 per cent of the time given that money-induced timeframe. Whether it is Medicare that needs increasing or your realisation, and admission, that you are wrong many times is arguable.
Just remember we are people, and if you had our condition for just a day you would not be able to work, or diagnose yourself, would be swallowing the highest dose of painkillers you could get your hands on, and perhaps then we would receive the attention we deserve.
The movie ‘Unrest’ is an excellent place to start your real education into our condition.
I wish you luck, as I do your patients.