I go to bed relatively early. I do this because I’m exhausted by 7pm and the last couple of hours of the day are a drag, because I sleep poorly (I lose at least an hour of sleep in the night and don’t stay asleep for longer than one or two hour blocks), Nu wakes about 6.30am and because I’m growing a baby.
Regardless of these excellent reasons, I shouldn’t need to explain myself.
I think many of us have encountered people who have an opinion about how we should do things, it’s especially frustrating when they do not understand our illness (or pretend it doesn’t exist).
But how about we let people choose what they need to do and leave them to it.
How about we acknowledge that, as much as culture and traditions and expectations, personal preference counts. I may not have strong cultural traditions, but I do have a way I do things. I have a valid opinion. And what I chose for myself and my son are the final decisions.
A lot of my lifestyle choices are influenced by how I cope with Fibromyalgia. My day to day choices dictate whether I’m miserably sore and fatigued, or whether I have a nice day – usually somewhere in between.
Sleep is very important. Rest is vital. Exercise, nutrition, supplements, heat, medicine and physio also form part of my coping mechanisms. And the only person that suffers when I am forced to overdo it, or let these coping mechanisms slide, is myself. And nobody should have to feel like they’re just treading water.
Fibromyalgia is an illness of self-management. We need the space to manage it.
And no one has a right to comment on this. Unfortunately we will find pressure to do more, to sleep and rest less, but we need to try to make it white noise. We need to keep our eyes fixed on what helps and walk forward with hope.