8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

B(4)

Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

It changes how you see yourself, which(1)

Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

Find ways to tell people how much you(1)

Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

Find ways to tell people how much you(2)

Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!

 

Petits ‘fours’

I’m joining in a blog post idea suggested by my blogging friends Clare and Nettie. It’s a series of questions with answers of four. I’d love to hear your petits-fours too!  Just copy and paste the questions into the comments field, I’d like to get to know you better and this is a fun and easy way!  In-four-mation makes the world go round.  Bahaha!

Four names that people call me, other than my real name.

Rachiepoo
Ragey
Fat Foo
Mumma

Four jobs I have had (not counting current jobs)

Cut Price Deli chick
IT help desk
Telephone marketer
(yep.  be kind to those poor souls, they’d rather not be calling you, either)
A blue body-painted extra in a promotional event.

Four movies I have watched more than once

Toy Story
The Piano
Whale Rider
We bought a Zoo

Four books I’d recommend

Tuesdays with Morrie by Mitch Albom
North of Normal by Cea Person
Purple Hibiscus (or any of Chimamanda Ngoze Adichie’s books)
The Good Women of China by Xinran

Four places I’ve lived

Christchurch; enduring memories are icy puddles on winter mornings and frost on my woollen school socks.  I had a pink school uniform, a tree hut in the willow tree. And I met two lasting friends, Rachel.G and Dana.

Papua New Guinea; land of Islands and Mountains, sunshine and breeze. This country is a big part of who I am today. All the memories fill my heart and mind and have shaped my personality.

Melbourne; in a boarding house, far far from home.  It was in a huge city, yet my world there was very small.

Sydney; my first ‘grown up’ home, a little flat with gingham kitchen curtains.  I loved keeping house and making everything just so. But arranging cushions does not a marriage make!  Thankfully, happy endings have been had by all who lived in that little Hornsby nest.

Four places I have been

China (loved the alleyway markets in Tian Jin)
USA (Colorado is my favourite state so far)
Germany (au-pair to a family in Munich)
England (where I met rellies who made me appreciate the marvel of genes)

Four places I would rather be right now

There’s no where I would rather be, but if I HAD to be somewhere else… and there were no limitations hefted on me by reality…

I’d be at Vista Verde in Colorado, having another magical white Christmas.  But only if everyone I love could be there too (yes, that includes you Nettie, and all the Pipsters, my dear friends, my girls from the Dysautonomia community and my lovely readers)!  We’d book out the whole ranch and build gingerbread houses and sing carols with the cowboys and take sleigh rides, or ride horses through the snow and drink mulled wine! There would be hot spas looking out over the snow covered Lodge, steaming mugs of hot chocolate, Cholly’s homebaked cookies, cedar scented cabins, snow tubing and twinkling trees lighting the snow-ploughed path home each night! Ohhhh!  Lucky lucky people that are doing just that right now.

(here’s some photos from when we did it for real)

IMG_2266

IMG_2209

IMG_2121

I’d be in Darwin: so I could see the precious bump that is going to be my little nephew next year, and hug his much-missed parents this Christmas; see their new house and get a fix for what their world looks like.  I’ve only seen it in my imagination and I want to know what it feels like in that part of the world.

I’d be in Sydney: so I could wish my bro and his beautiful wife and kids a Merry Christmas in person, which would involve my arms around all of them, lots of loud and enthusiastic singing and lots of floating in the pool, ‘cause Sydney, like Darwin, is too HOT!

I’d be in Gisborne: so I could marvel anew at how giant my nephews are becoming, meet the new puppy, chat and reminisce about my Mum with my sister. Dose up on those sisterly cups of tea, and wish them all a beautiful Christmas too.

10557539_10153013591615815_1698874208415386230_o

Four things I don’t eat

offal
strange parts of animals
kimchi
pork buns (after an experience once on a ship that I cannot shake from my amygdyla)

Four of my favourite foods

(I had to put these into categories, because I couldn’t stop at four!)

Pavlova, Chocolate, Cake, Cinnamon Rolls
Fresh garden veggies; asparagus, snow peas, capsicum, grilled artichokes
Venison, lamb, crayfish and salmon
Fresh still-warm white bread (I know.  Evil.  Yet delicious!)

Four TV shows that I watch

Game of Thrones
Downton Abbey
Graham Norton
Anything on the Living Channel

Four things I am looking forward to this year (and into 2015)

Finally trialling treatment and hopefully having favourable results
Hearing back about a study opportunity… and hopefully, DOING it!
Spending heavenly horse time with my daughter’s new pony (shhh!  still a secret from her!)
Writing more…

 

10480592_10153013595440815_4031909229694408087_o

Four things I am always saying

“WHO was the last person in the toilet?!”
“Try again, using calm words…”
“…it’s a dysfunction of the autonomic nervous system, the part of our bodies that controls all the automatic functions”
“FFS” (it’s swearing, so I won’t translate)

___________________________________________________

Come on!  Tell me your fours…

(copy and paste this into your comment)
Four namesFour jobs
Four movies
Four books
Four places lived
Four places been
Four places I’d rather be
Four foods I don’t eat
Four foods I love
Four TV shows
Four things I’m looking forward to this year
Four things I say