Disability and fun can seem incompatible. How can you have fun when you are stuck in bed all day (and not in a good way)? What ways are there to laugh and smile when you are preoccupied with pacing, worrying about benefits, dealing with all the well-intended recommendations to drink more water/eat healthily/try chia seeds and oh yes, the actual chronic illness you are living with every single day? It’s hard, I know.
I really do know as I’ve lived with chronic illness for the last thirteen years. But I’ve also danced in firelight on the beach at sunset, shared my heart on stage with hundreds of people, groomed the horses in milky December light, celebrated my 21st birthday with a long-distance princess party (tiaras and glitter included). I’ve sent lemon cake to my literary agent, had breakfast with San Francisco, road tripped across the country shooting black and white film, held a party in the woods with champagne flutes and silver, starred in a fashion photo-shoot, fallen in love and written endless letters with scrawled handwriting and Rose Maroc scent.
And I believe you can, too.
It can feel like life is an endless round of pills, doctor’s visits, resting, struggling, symptom management and oh my goodness it’s time to wash my hair again.
I know there’s an idea that if we try/manifest/push hard enough we can be happy all the time. And if we haven’t reached that yet it’s only because we aren’t evolved enough and are still hanging onto ‘judgments’ or ‘limiting beliefs.’ To me, that sounds like perfectionism. I think life includes joy and sorrow and I don’t believe that illness or suffering is in any way a punishment. Instead, I think of the delightful times of life, like moments of light. They shine through, and even when they are past, their glow still suffuses me with joy and peace.
Joyful moments can contain fun and ordinary moments can be made fun. For example, I don’t like taking some of my medicines, and I agreed to take it only if I could have a shot glass to slam after swallowing the disgusting stuff. So now I have a set of pink shot glasses and morning medicine becomes an opportunity for smiles. The medicine doesn’t work well for body shots though, just a warning.
It’s tempting when you have a good day to want to do all the things. I mean all of them, now. It’s like being kept under house arrest and suddenly and unexpectedly allowed out. You don’t know where to go, what to do, how long your freedom will last and quite frankly the pressure of it all is making you close to passing out. I believe that if we can create joy every day then there is not much pressure on wanting to do all the things on our good days.
I’ve made a list of suggestions of ways to create joy in the everyday:
You don’t have to eat at the table (or in bed). Why not try…
Drawing room picnic – Pack a picnic basket and head out into the wilds – or the next room – of your home. We use a special, green blanket for our picnics. It’s perfect to lie out anywhere. Have a seat, look at nature books, imagine an exotic place or enjoy your favourite picnic foods from your childhood. Crust-free, triangular sandwiches and pink lemonade, anyone?
Midnight feast or 7:00 pm brunch – Change things up! Topsy-turvieness every so often can be a great way to add some spice. Have a feast at midnight (think raiding the tuck box). If a midnight feast isn’t feasible, do brunch for dinner; a long, leisurely meal in your pajamas? Talk about energy conservation and luxury!
Book a virtual breakfast date. Nothing starts a day right like a friendly face on Skype or Facetime.
Pick really cool sandwich fillings or salad dressings for the next week.
Have tea from a proper teacup.
Bathing and Beauty Rituals
When you have pain or chronic fatigue bathing and dressing can be such a bore. Let’s make it into an opportunity for self-care instead!
Spa day – If showering/washing is an effort, transform the task into a spa day. Have your beloved wash your hair, and imagine yourself under a waterfall. For years, we have lived in a house with no shower. The only way to wash my waist length hair is for Linus to pour jugs of water over it for me. We’ve made it a romantic ritual, one that is pleasing for us both. Mani/pedi, massages, and homemade lotions and potions all add to the ambiance.
Wear a tiara. In bed. Just because.
Put on a nice dress, or a bright t-shirt.
Put in earrings.
Wear mascara so you are less likely to cry. Cry first.
Cut up magazines to pick a style that works for you.
Paint your nails turquoise, or teal, or copper.
Use lovely hand cream.
Magic up a face scrub from oats and almonds and vanilla. Put it in a glass jar with a lovely label.
Add ginger and fennel to sugar in a huge jar for a super scrub for toning legs.
Wear a fluffy jumper.
Wear something on your head; a hat, a tiara, flowers, it changes the mood.
Resting and Pacing
It’s essential, and it only counts if you are lying still, so I’m told. But here’s the secret – if you are lying still in a darkened room but your mind is roiling with frustration and anxiety, then I’m not sure how much that counts as rest and how much good it’s doing you. Why not try these gentle activities for a period instead?
Paint to music – Get out the paints, put on some music, and paint whatever’s incited by the sounds. Or close your eyes and paint in your mind….
Experiment with morning and evening meditation.
Dance in bed – via Gabrielle Roth.
Try a school or method of exercise made to work with your body, like Feldenkrais or yoga.
If you are up to going out but worry you’ll pay for it later, try these alternative modes of travel.
Explore your neighbourhood in the dark – When I was very ill, going out during the day was just too much for me. People? Ack! Sunlight? Gah! But the fresh air was still a wonder drug. So we’d go out at 4 am. Take it from me, the very early morning hours are a marvelous time to explore a city (too late for drunk people, and too early for workers. Good and quiet!) Bear in mind, of course, that if you’re in the country, where there are few streetlights, this game should be adjusted – dusk or dawn is better.
Visit museums (in person or online) – Many museums are free and accessible, and when they aren’t, online tours often are. Get Googling!
Get out of the house, in your mind or physically. Go for a trip, on your feet, in your wheelchair, or through photographs online.
Get in the garden, or grow one with a seed packet and a windowsill tray.
Connect: Ring a friend, actually call them on the phone in person. If you haven’t got a friend to call email someone you admire and set up a Skype date. Try to find someone who makes you feel positive rather than someone who can drain your energy. If no one’s available, try Samaritans or a similar group.
Read something completely different – ask the librarian for a recommendation. If you’re housebound, try giving your local library a call or an email.
Make a playlist of your favourite happy tunes.
Photograph every third thing you see.
Write the introduction to your memoir, why not?
Buy some rainbow sharpie pens, play with them.
Find a new radio station, go pink, or classical, or rave.
Have a go at a huge canvas, or a tiny one.
Vintage TV shows, Buffy the Vampire Slayer anyone?
Favourite children’s books, reread them.
Read through the archives of your favourite blog.
Turn off Facebook.
A single delicious indulgence – a magazine, something from your wish list, a massage.
Paint it out, embroider and turn your down day into art.
Micro-volunteer and turn your struggles into hope for someone else.
Make a list of things you’re grateful for / happy for.
Get your favourite things together and just ‘play’ with them. Favourite music, books, clothes, letters from loved ones etc.
Compile a ‘Smile Box’. Maybe treat yourself with something from the shops, a collection of items and put them all in a box. When you need it, open it up and take something / everything out. Or let us make one for you at Healing Boxes.
Be aware of the engrossing effects of things like television, computer procrastination etc. and try to avoid prolonged, unstructured sessions.
Choose a new scarf.
Write, just keep moving your fingers, see what appears.
Re-read all your favourite authors’ books back to back.
Learn about the stars. Go to www.galaxyzoo.org and explore the universe.
Look at a map and learn about new countries, capitals and the world.
Learn to say hello in another language.
Write a poem.
Make a ‘zine.
Sweeten Your Space
Make Change – Some say a change is as good as a break. Trying out an often unused furniture throw, bringing in some plants from outside, maybe even wearing a nice coat or shoes around the house can put us in a different mindset. My vote is for the glitter gold stilettos or the vintage 30s sequin pumps my friend in Alabama sent me.
Put the lamps on to brighten the room.
Pick fresh flowers from the garden.
Burn geranium or rose oil to lift your spirits.
Put a posy of sweet peas on your bedside table. If you can’t get flowers, get bare branches or evergreens from the garden. No garden? No problem – make your own blooms.
Pin up glow in the dark stars on your ceiling, you can even get pink ones you know.
Make a new cushion cover and embroider with radical feminist embroidery.
If you’d like further support, ideas and inspiration check out my lists:
-If you are stuck in bed.
– Fun and feeling good in winter.
– Ideas for if you are bed bound and bored.
– More fun things to make you smile when ill here.
We love creating joyful moments and we’ve set up a company to do just that. Healing Boxes creates boxes of healing goodies to warm hearts …..
For more info, or to order a Healing Box visit www.Healing-Boxes.com
This article was originally published in The Pillow Fort Issue 2 and reprinted here with kind permission.
Image courtesy of Robynlou Kavanagh.