I don’t know about you, but sleep is a rather contentious subject in my household actually in my extended network too. By the majority – meaning everyone other than me – it is seen as something that happens at set times, which may or may not be altered in line with events going on in life.

The theory of going to bed at a set time and getting up at a set time, with no trips to the land of nod outside of this sounds ideal – well maybe if it wasn’t for that little thing called chronic illness.

My sleep pattern is awful, which quite frankly is strange when you think that the majority of my conditions include fatigue as one of the symptoms. When your fatigued you think your head would hit the pillow and you would be away, snoring or perhaps heavy breathing into the abyss. Yet, my head hits the pillow and nothing and of course this only exacerbates matters because the more you think about it the more you can’t. That and the fact I tend to be in a lot of pain. Of course, when it comes to getting up it is the reverse and I am exhausted unable to get out of bed at all. And this is where my problem starts.

I will be honest right now I do not get up at a ‘normal’ getting up hour. Quite simply I can’t. A) because of tiredness and exhaustion, and B) because of other symptoms. However, my household, my extended family, my neighbours, in fact maybe everyone who knows me does. So straight away rather than be seen as someone who is unwell dealing with unpleasant symptoms which means I cannot act in the ‘normal’ way like others, I am seen as lazy or idle.

So, the noise begins of people getting on with their routines because I am in the wrong for not living in the conventional timescales of the day. The noise begins and I get woken up, woken up from the limited forty winks I may have already had, and so the irritation starts. I complain people are too noisy, other people complain I should get up earlier like I am a teenager who has pulled an all nighter. The reality is no one is in the wrong, we are just living in very different bodies with very different needs.

I guess my frustration lies in a number of factors, a) frustration at myself not to be able to be like everyone else and just get my arse out of bed and feel fine, and b) the fact that people don’t understand that a lack of or interrupted rest for me is not the same as it is for them. Sure you don’t need to be chronically ill to know that a crap night can make you feel cranky, foggy headed, unmotivated and generally bleurgh, this is across the board, but with chronic illness it can be the trigger that takes a possibly good to middling day to an awful one as the domino effect of symptoms start.

I am not going to go into all the scientific reasons why getting some shut eye is important because there are many a website which will tell you this (probably myself included somewhere), but I am going to talk about why napping is so important to me outside of that and it is simple; sleep gives me respite.

Battling on-going symptoms which at times can be constant is exhausting both physically and mentally, and if indeed I cannot hit that delete button and make it disappear, it is paramount to at least hit the pause. To let my mind and body stop for a short while.

During times of intense flare-ups catching some zzz’s is an escape. I don’t have to suffer anymore. When I am asleep I don’t have to be in pain, or feel poorly, and my body doesn’t have to battle to keep going – it can rest. If it is well rested then perhaps it will give me respite for the following day too, or at least to begin with and that in the hard days is worth so much.

With this in mind, I will take it when I can even if this means I do have to do it outside the considered reasonable bedtimes hours. I don’t sleep in because I am lazy, I do because if had enough of without interruptions it gives me a fighting change of a better day, it gives me back a bit of me.

How is your bedtime pattern? Do people find your routine outside of the norm?

Sarah xx