Sunday, 8 September 2013

So! Time to begin.....

Location: Bed. Master bedroom, aka my 'night bed'. It's the afternoon, so I shouldn't strictly be here, but they're my rules so I can break them if I want. Just one month before 'The Event' when I became very unwell indeed, we moved house. There are three double beds in my house, three sofas and numerous chairs, most of which I can only sit upright on for a short time. Lots of options. Lots of lying down. Sleep itself can be elusive though, so I try to keep actual sleeping for my night bed. I think they call it 'sleep hygiene'. Yes- it is a thing.

You see, like many people with an invisible chronic illness, you only see me on the good days. Because on the bad days, I'm lying in bed groaning. Every movement or swivel of my eyes causes me pain. A trip accross the room leaves me breathless and exhausted. My limbs ache as if full of poison, my head spins, I struggle to string together a sentence. I can't remain vertical so have to lie down. These are the bits you don't see, the bits I like to keep for the lucky people looking after me. 

On a good day- I may make it out for a coffee, or out to a friend's house or a quick spin around the shops (pushed in my wheelchair), but the aftermath of this is up to a week of increased symptoms and general rubbishness. On a good day I always look much better than you expect me to look.

You won't hear me telling you about my symptoms, you might not know how much pain and discomfort I am in. I may have made it out the door one day, but please remember, even if I look good, It does not mean I feel good or are better. I only wish that was the case.

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