Today is a 'no' day. A day where I'm not obliged to do anything I don't want to. A precious day off.
Hi. I'm Jaime. I am an artist and maker, reader, writer, bibliophile and library assistant. I'm also a wheelchair user, severely, chronically ill and disabled - it's a long list but the basics are Ehlers Danlos syndrome, gastroparesis, autism, and severe mental illness. My middle name should probably be 'stubborn', I used to be a classic overachiever until I was ambushed by my own brain and body, and I'm having a 'no' day.
Yesterday afternoon was spent at the hospital I go to for my gastro stuff, having a colonoscopy. For those of you fortunate enough to be unaware of what this entails, I spent the day before yesterday drinking industrial quantities of very strong laxitives which resembled liquid plastic lightly flavoured with toilet cleaner. Oh, and telling myself firmly I was not, under any circumstances, going to throw up. Because then they'd make me do it again. I choked most of it down, then retreated to the bathroom and sent my husband to visit his parents. It was not pretty and I really, really didn't want an audience.
So, yesterday, I got up at six o'clock in the morning (did you know there was a six o'clock in the morning?!) and choked down more of that ... stuff. Then I was sedated not nearly as heavily as I'd hoped and had a camera shoved into somewhere not meant to accommodate videography equipment, and made to roll back and forward to make it go round the bends, only to be told I'd not drunk enough liquid plastic/toilet cleaner combo and would have to do it again in six weeks. Very, very unimpressed Jaime.
After taking the cannula out of my elbow myself, in the complete absence of staff in the recovery room, demanding my clothes and my husband when someone appeared, and effecting my escape, said husband wanted to go shopping for a new coat. I didn't, if I'm honest, but the poor bloke put up with two solid days of me complaining about it and hours sitting in a waiting room, so I kind of felt obliged.
Needless to say, I was absolutely shattered when I got home. And, for that matter, when I woke up again this morning. Hence today being a 'no' day. I'm still wearing my pyjamas and dressing gown at five past seven in the evening, I've alternated between my bed and the couch all day and left taking the dog out to my husband (about which I do feel somewhat guilty as he's basically my dog).
It took me a long time - like, a really long time, decades - to be all right with letting myself have a day off. In fact, it's still hard and there's still a little voice in the back of my mind screaming frantically that I'm wasting time, don't I know I'm not doing anything useful?!
But that's just it - I have to keep telling myself this, but I am doing something useful. I'm resting, I'm healing and recovering, pacing and doing my best to manage my health, or lack thereof. And I am worth the time it takes to do that. I'm reading Doctor Who books and snuggling with my doggie and telling my husband he's awesome. These are worthwhile things. So today, just for a while, it's a 'no' day.