My entire life is spent both consciously and subconsciously accommodating my diseases, particularly pain and exhaustion. It’s so automatic I don’t even think about it – I don’t know any other way to live now. Many people seem to marvel at how much I pack in to a day considering how ill I am, but I achieve it all through ruthless efficiency, organization and copious use of gadgets. Here are a few examples:
- I am a rampant multi-tasker. While my toast is browning in the morning I unstack the dishwasher. While my dinner is cooking in the evening I re-strack the dishwasher.
I text while I pee and poo. Sometimes I make calls while I pee and poo – now aren’t you glad we only know each other online? 😉
While my lunch is cooking I water my houseplants.
I make calls to my friends on my hands free phone while I’m ironing.
- I make a meal menu for the week then grocery shop the ingredients from the comfort of my bed. It takes about 12 minutes flat and arrives at my door the next day.
- I have recently discovered frozen diced onions. They have revolutionalized my life.
- My food processor is one of my best friends. It dices, slices, grates and liquidizes and saves my hands, fingers and wrists from permanent injury.
- My Superkettle is another best friend. Instant hot water 24/7 at the push of a button.
- I batch cook. When I’m having a good enough day I’ll make several dishes at once, including things like red pepper sauce, sweet chilli sauce and carob chip cookies, and freeze them.
- I have a bath, not a shower. I can answer 5 emails while the bath is running, read Charity magazines while I’m lying in the bath or catch up on the latest episode of Emmerdale (yes, I have Sky telly in my bathroom – how freakin’ cool is that?!). Bathing also means I don’t have to stand or sit upright, which I struggle with when I’m hot, and don’t have to raise my arms above my head to wash my hair, which often makes me feel like I’m going to pass out. And as if all that weren’t enough, soaking in a warm bath is one of the few things which helps my pain levels. Baths rock, although by the time my cleaner comes every other week my tub looks like a Gorilla’s slept in there, but what’s a few million hairs between friends?
- I wear the same clothes until they can stand upright on their own to save on washing, although I do change my undies every day (if not my socks!).
- I don’t do housework. My cleaner blitzes the house once a fortnight and inbetween it just stays mucky. She sometimes needs a chisel to get the toothpaste off my sink but that’s her problem, not mine 😉 My one concession is my Robot Vacuum cleaner, which whizzes round on its own and hoovers up any crumbs which haven’t already been eaten by my dog.
On a Sunday night I take a look at my week. I have a diary where I keep all my appointments and notes on stuff that needs doing, but I also have a tiny notepad. On Sunday I head each page of my notepad with the days of the week and break down everything that needs doing into timeslots. Here is yesterday’s note:
- 8am – photography blog post
- 9-9.45 – tidy up ready for cleaner/laundry
- 9.45 – brew!
- 10-11am – prepare lunch and dinner
- 11am – cleaner here
- 1.30pm take Bertie out
- 2pm leave for town (order Mum’s door knobs)
- 3pm – hair cut
- PM: finalize Tesco shop and do final draft of newsletter
Forget spontaneity – it has no place in the life of a spoonie.
I have a definite pattern to my energy throughout the day. My mind is sharpest when I’ve just woken up, which is why virtually all my blog posts are written at 8am. I have the most physical energy between 9-12noon, which is why I do my cooking then or any household chores. I have a dip between 4-7pm, which is why I’m usually in bed. I’m physically tired in the evenings, but mentally often OK enough to go on Facebook which only involves skimming posts and writing the odd sentence or two. It’s pacing in action and will be different for all of us.
Like everyone else I have bad days, bad weeks, even bad months and my usual schedule goes out the window. But when you really break life down there is very little that’s so urgent it can’t wait. When I’m particularly ill my priority is preparing meals and paying bills – everything else gets put on hold. Strangely enough I’ve found that, even if I don’t do laundry for 5 weeks the dirty clothes haven’t disappeared and are still in the laundry basket where I left them 😉
I’ve had to let go of my old perfectionist personality and the world has not ended. My car isn’t as clean as I’d like. My home isn’t as clean as I’d like. Hell, I’m not as clean as I’d like but so far I haven’t been arrested by the dirt police 😉 I am, by necessity, a virtual hermit and have had to let go of other people’s social expectations of me which has been really difficult. I don’t read newspapers or do research or belong to every internet group and blog on my disease in the entire universe because I don’t have the energy. I rarely watch the news on tv these days because I find it all quite depressing and I’m depressed enough with my own life thank you very much! Society puts pressure on us to be involved with every little thing but it’s not necessary – I’d much rather spend half an hour playing with my dog than googling the histamine content of different types of lettuce or arguing the toss about the Palestinian crisis with some aggressive numpty on social media.
I guess what I’m trying to say is that I’ve simplified my life and the life that’s left has been ordered into submission and it works for me 😉