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!

 

Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.

 

YOU ARE SIMPLY THE

O Frabjous Day!

Callooh!  Callay!  He chortled in his joy!

O Frabjous Day. Illustration by Mike Amend source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day
O Frabjous Day.
Illustration by Mike Amend
source: http://www.elfwood.com/u/mykeamend/image/d7957840-270e-11e4-9ecf-d547aae57bd2/o-frabjous-day

___________________________________________________________________

A week ago, I had my first Methylprednisolone infusion. It’s been an interesting week!
It’s as if, last Monday, someone beamed me up, out of the foggy, high gravity atmosphere of planet Pandysautonomia and re-homed me somewhere different.  Somewhere the air is clear and the sun is shining.  I must actually be a native of this new planet, because I feel so good here.  Like all of nature was built for my body’s needs.  The air, the water, the food, the beauty.  It feels like I’ve been here before, it feels right.  Have I slain the beast?  Is it possible that this could be the beginning of the end?

I was so hopeful I would respond to steroids, because that bodes well for my panDysautonomia to have an auto-immune origin.  I was also a little fearful that my high hopes would make me want to be well so bad that I would somatise wellness (is that possible?).  But there is no doubt in my mind that what I am experiencing is real.  I feel better.  SO much better.  I have been DOING things!  Supermarket shopping without having to stop and sit!  Walking my son to swimming, and back again, without my cane!  Strolling around Bunnings with my family! Taking the kids to the beach, without my hubster! Helping out with household tasks!  I know that is a lot of exclamation marks, but if you were me, you’d be full of superlative expression too!

Every now and then, I catch my hubster’s eye and the tears well up, for both of us. There is no joy like being able to help, to be part of things, to be effective.  I am marvelling at my body.  Wiggling my hips and jiggling to the beat. To dance!  It is sublime. And, just now, I mounted our stairs.  This is something that I have done with difficulty every single time since we moved in six years ago.  The bannister has been my help; I heave myself up with my arms and my legs, pausing to rest along the way. But just now?  I skipped up the inside of the stairwell,  no bannister for support, no pausing.  I made it the whole way, body upright, under my own steam!

Feeling like this, is frabjous news!

Feeling like this makes me realise anew, just how incredibly awful I felt before.

And it horrifies me that there are people feeling like I have felt for the past six years.  Millions of them. Feeling like that and facing life regardless. Feeling like they are swimming through concrete as they fight for wakefulness each morning.  Like their heads are fashioned not of blood and bone and brain, but stone.  Like their will is too weak to force their legs to stand, to force their faces to smile, to force themselves again and again simply to do the smallest of tasks.  It terrifies me that I might feel that way again myself.  I try not to dwell on that.  If this is temporary, then I am making the most of it!  If it is a sign of better things to come; wahoooo!

One of the big changes for me is that my pelvic and hip pain has disappeared.  I’d had x-rays just before Christmas, in case the pain I was experiencing was due to a structural problem.  They were all clear.  So our conclusion was that the old nerve pain from my previous surgery was back.  It crept in a year ago, stealing a spot along my synapses and shouting out orders.  Radiating down my leg and so insistent that I often couldn’t get to sleep.  I carefully limited how often I took painkillers because I hate to rely on them. I knew I was in pain, but I didn’t realise how debilitating the pain was.  It subversively stole my objectivity and didn’t stop until it had a good portion of my mobility, too.  Last Monday, when the immunologist asked me for a state of play before my infusion, she wanted to know where I would rate that pain on a scale of ten.  Ten being worst.  I rated it at 4.   Now that it is gone I can see how very much higher I should have rated it.  That pain dictated so much about my sense of wellbeing, but I’ve been so long without the perspective of being pain-free, I had no idea how bad it was.  In hindsight, I’d call that pain a 7.  At it’s worst, a 9.   And without it the smiles keep stretching slowly across my face.  How much easier it is to be happy when you are pain free.

Other things I have noticed that make me happy:

  • less dizziness (YES!  six years of being dizzy every time you move wears you down)
  • better temperature regulation
  • better perfusion in my feet and hands, less numbness and prickly pins and needles.
  • Easier digestion (the post prandial bloating still happens, but it is resolving itself faster)
  • more sweating at the right times (like when I am hot) and in places that haven’t sweated for a while.
  • less dry eyes and mouth
  • no nausea (win!)
  • I can walk for more than ten minutes
  • More energy
  • I am craving sweet foods less (I think this is because I have more energy)
  • Less of the regular sore throats

 

On the down side I have noticed

  • higher heart rates
  • higher blood pressure
  • problems with my eyesight
  • no significant improvement with my bladder or bowel
  • I tire quickly and need to take naps still
  • my medications might be a bit much for me now

 

When I was a little girl, one of my favourite poems was The Jabberwocky, by Lewis Carroll.  I loved it so much that I memorised it.  The nonsense words made so much sense to me and ever since, I have found ‘frabjous’ to be the perfect way to describe a great day.  It’s so good to be able to write that I have had a great day.  It’s so strange to be able to tell you that this great day has followed others!    Here’s to more frabjosity. Goodness knows we all need more of that.

And if you are reading this and you are still stuck on that planet that sucks the life force from your bones, take heart.  If a frabjous day can happen for me, there is no reason it can’t happen for you too.  Hang in there, keep pushing, keep looking, keep trying. Sometimes, it is a long time the manxome foe we fight. Take hold of your vorpal sword and advance!

JABBERWOCKY

Lewis Carroll

(from Through the Looking-Glass and What Alice Found There, 1872)

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

“Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!”

He took his vorpal sword in hand:
Long time the manxome foe he sought —
So rested he by the Tumtum tree,
And stood awhile in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One, two! One, two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

“And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!’
He chortled in his joy.

`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogroves;
And the mome raths outgrabe.

 

 

 

Lappy = Happy

 

Screen Shot 2014-11-14 at 9.51.44 am

So here I am in bed, but not my own.  My knees make twin mountains and I stare at the standard issue hospital curtains.  They are a kind of mustardy yellow abstract check.  The perfect vomit inducing shade of puce.

I’ve been a less than model patient this time around.  I’m too jaded, too familiar, too experienced with the ways of the ward to tolerate some things.  It all led to me packing my things in the middle of the night last night, buzzing the nurse and telling her she had to take out my IV and my stomach port so I could go home.  She said she couldn’t do that and I was so livid.  I nearly ripped them out myself but I am too much of a wuss.  Instead I curled up, fully dressed, on my horrid hospital bed and cried.  Who was I kidding anyway?  It’s not like I could have even walked to the cab rank with my bags in my state.  I felt impotent.  Angry.  Overwrought.

I came into hospital on my Gastroenterologist’s standing orders.  When I can no longer manage my pseudo-obstructive tummy, or when I go into bladder retention as well as bowel, things get nasty pretty quickly.  I come in, hand over my letter and get shunted up to a ward to begin the process.  The process is usually more of what I do at home, more suppositories, enemas, more oral laxatives and subcutaneous injections. Catheterisation.  Then one day some magical moment that defies determined effort will just occur.  Finally.  Things will move.

This time around I’ve been a less patient, patient.  I can’t really explain why, except that there’s so much going on at home and I know I need to be there.  And there’s a snorer in the bed next to me so my sleep deprivation is making me grumpy.  It’s not her fault, but sleeping next to her is like sleeping next to a cement truck. So not much sleeping actually happens.  And I don’t have the patience for these hospital time frames.  I can’t wrap my head around why it needs to take an entire day to make a decision about getting me some antibiotics for my urinary tract infection.  Even effervescent sachets have to be approved by a doctor.  At home, at least I would be able to go to my medicine cabinet and help myself.   I have wished, over and over that I didn’t come in.  That I kept pushing through at home.  I should have.  Or why didn’t I pack the whole medicine cabinet to bring with me? I could have sorted my own problems in no time. Maybe.

Some things are changing though.  The nurses during handover are saying ‘Dysautonomia’ correctly.  The gastroenterology registrars know what it is.

And my hubster showed me how to make my phone into a hotspot so I can blog.   I’ve missed my lappy.  Being able to write keeps me happy.  Sorry I haven’t written anything particularly profound, inspiration is thin on the ground here (or maybe it is just my grumpiness getting in the way) but I wanted to pop in and say that I’m here!

Thanks for your lovely wishes.  Here’s hoping that I will have a crap day!  🙂

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