Sleep, something there never seems to be enough of. Sleeping can be difficult for us as the pain can hinder peaceful sleep, or getting your aching joints into a comfortable position for any length of time, or exhaustion allows you to sleep – for a while. We have become used to the wee small hours when everyone else seems to be asleep but we have woken up with pain, or discomfort.
Do you lie there and hope sleep comes back, or do you get up and try to stretch, move, anything to help aid a degree of comfort so that when you go back to bed, so you might sleep? If you have someone else there, you have the added pressure of trying not to wake them too, if you are working you have the stress of knowing how wrung out you will feel the next day while trying to carry out your duties well.
Then there is the fatigue, it is such a debilitation part of AS, but when combined with lack of sleep can make it impossible to carry on – to do your job, to have a social life. I have to say that one of the most enjoyable parts of not working anymore is that when I wake up at 2 or 3 in the morning – it doesn’t matter!! I can get up – make a cuppa – settle with my book - with no worry. I remember lying awake, especially on a Sunday night, and watching the hours go by knowing I needed to sleep, and sometimes with no sleep, sometimes with an hour or 2, because of course the more you worry about it, the more difficult it becomes, and then having to try and function at work.….
Most people go through periods in their lives when they find sleep difficult, but for us, and others like us when fatigue is part to the disease; it is difficult to describe the intense bone weariness, the feeling of walking through treacle, both physically and mentally. Oh I am so jealous of those people who can cat nap, I have never ever been able to do that either, but I am expert at staying awake all night long……..