On the 1st of November, Annmaree from the Dual Sensory Impairment project went to Perth to give a talk on grief and sensory loss. Part of this talk was centred around how to cope in a healthy way with bad days. We all experience grief, sadness, distress, anxiety, worry and more. One of our colleagues calls it BDBD: bad deafblind days.
One of the participants in our research had this to say:
“Usher syndrome (a form of dual sensory impairment or deafblindness) is about grief, grief, grief. I have found taking up dancing and dance lessons has made an enormous difference to my psychological wellbeing. Also, art therapy has been helpful. It’s about adjusting what you’re interested in and what you can do to come up with something that keeps you occupied and amused.”
These words are about longer-term strategies to help us adjust to the sensory losses we are experiencing. What we want to talk about here are the bad days and tough times, and how we can ease our distress little by little, bit by bit, so we can see the way ahead for longer-term adjustment (at least until the next hurdle).
Better coping
What we can do to feel a little better for a few minutes or longer in tough times. Our doctors don’t want us coping in unhealthy ways such as drinking a bottle of something alcoholic, so we are focusing here on things that won’t cause more problems the more we do them!
My own list is:
- Take hearing aids off. I find the silence to be truly beautiful as with the aids on the noise is constant and confusing.
- Make a cup of tea in a lovely mug. The heat warms my hands and allows me precious mindful minutes.
- Moving: chair exercises, going for a walk, doing laps of the hallway or forty minutes on the exercise bike.
- Touching sea glass and worn china shards from two beaches on a happy holiday in the Shetland Islands. These are tactile and interesting and they ground me in nature, and in happier times.
- I can text a friend or partner to say I’m having a bad day.
- I write, and indirectly, I’m doing something for others as I do articles, book chapters and presentations like these.
- Knitting also distracts me from the bad day by forcing me to focus on the feel of the wool and the stitches. I am the world’s greatest stitch dropper, but persisting with knitting is restful (plus I have a friend who picks up dropped stitches and fixes all the holes I have made).
This list that follows is just to start you thinking about what might work for you. Everyone is different and so the things that make each of us feel a bit better will be different too. And we all have different residuals of our hearing and our sight. So the things that we can do safely will be different too. There will also be good things that aren’t on this list, so add them in. Come up with a list of eight to ten things that work for you. Put the list on the fridge or somewhere else where you will see it regularly to remind you of some little things you can do to feel better for a few minutes or more. Having the list on your phone as a written or audio file, or in braille or on paper also helps you have easy access to remind you what you can do on a BDBD.
When I gave this talk, Dr Alana Roy from Melbourne followed me with a presentation on how grief and loss can be a spiritual journey and that was a big reminder that the original list didn’t have spirituality on it. She spoke of First Nations peoples’ cultural connection to land and gave us all a piece of local rock to touch, to ground us and to connect to thousands of centuries. I have added spirituality in whatever form is meaningful to you to the list.
Better Coping Menu
What you can do to feel a little better for a few minutes or longer in tough times.
Families, partners and friends: It is helpful to know what might help in a crisis, or a bad day, or when a person you care about is sad. So if your person has a list that is specific to them, it will help you to choose something from it to do, such as “how about I make us a cup of tea” or “let’s go for a walk in the park” or “shall we finish that puzzle?”
Be Prepared for a Bad Day: Make sure you have some supplies on hand, e.g., bubble bath for that relaxing bath, or puzzle books, or favourite teabag, or tin of Milo in the pantry. Put the list somewhere obvious such as the fridge door where you will see it often, especially when you might need it.
Quiet Time Wherever You Are
- Sit with a cup of tea (or hot chocolate or Horlicks or coffee)
- Create a sensory bowl of objects to feel that give you comfort
- Practice slow breathing techniques
- Do your relaxation exercises
- Meditate
- Mindful colouring books
- Cuddle a partner or friend
- Cuddle your pet
- Read or listen to books, audiobooks or braille books
- Practice positive thinking: things will get better; one step at a time; this will pass
- Write in a journal (or use a journal app)
- Take a warm shower or bath
- Book a massage or get a friend to give you one
- Get some good sleep: talk to your doctor about good sleep hygiene if you are having trouble sleeping
- Order takeaway dinner as a treat
- Distraction thinking: pretend you have won a large amount of money (change the amount each time you do this, e.g., $10,000 one time and 2.4 million dollars the next), then think about how you would spend it. Another one is to create a fantasy football team: who should be on it and in what position?
- Spirituality in whatever form is meaningful to you
Connect
- To a close family member
- To a good friend
- To a counselling service
- To a peer support group if there is one nearby
- To new ideas: take a class in something that interests you
- To others doing it tough, or a service or charity that needs volunteers
- Use the national relay service if this will help you to phone a friend or ally
Physical Activity
- Go for a walk (this might not work at three a.m., but can be great at two p.m., for example)
- Go for a run
- Ride a stationary exercise bike
- Swimming in pools, beaches, or wild swimming (relaxes some people)
- Gardening
- Visiting a garden centre
- Picking flowers and arranging in a vase, even if it’s only two blooms in a water glass
- Squeezing a stress ball
- Yoga
- Pilates
- Chair exercises
- Take your pet for a long walk
- Do some cleaning, housework, or a home project
Spending Time in Nature
- Touch tree trunks
- Go for a walk, a hike in the country, or local park
- Have a picnic in a garden
- Visit a herb garden: rub the leaves between your fingers to get the feel of the leaves and the smell of the oils
Art, Crafts, Hobbies
- Mindful colouring books
- Crafting
- Crochet or knitting
- Painting
- Visit an art gallery or museum
- Take a tactile tour
- Work with clay
- Cook something simple but delicious, or long and complicated if you like the distraction
- Read a new book or re-read a favourite book in whatever format suits you best
- Learn about something you’re interested in; take a course or read a textbook
Music
- Move to music or vibrations
- Lie on the floor with your favourite music on
- Put your phone on a tactile music app and feel the beat
- Go to a music performance of a band, singer, or orchestra that you like
- Go dancing at home or out to a club or a lesson
TV/Movies
- Watch a funny show or movie, but something not too horrifying or gory, as we want you to feel better, not terrified
- Go to the movies with a good friend
- Cheer on your favourite team in person or on the couch
- You can use speech to text to help with getting the score updates (although not all are totally reliable)
Games
- Play games however this works for you: card games, board games, computer games, handheld gaming devices, tactile puzzles, etc.
- Puzzle books such as large print sudoku
- You can get tactile versions of some games and puzzles, e.g., Monopoly at the Vision Australia online shop