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!

 

“Inappropriate Happiness”

Today was my first steroid infusion.  I don’t mind admitting that I was very nervous.  I seem to have a talent for experiencing side effects when they are on offer.  My first two drugs, fludrocortisone and midodrine both had to be stopped because the side effects were dangerous. Fludro dangerously rose my intra-ocular eye pressure.  If my optometrist hadn’t noticed the rising numbers, I could have gone blind. The midodrine (my most favourite medication of all time) caused urinary retention and hypertension.  Again, I had to stop.

As always, I had done my homework before today’s infusion.  I knew the common side effects and the less common.  I also had a moment of panic when the ward immunologist explained during her disclaimer, “…and I have to tell you, it’s rarely ever heard of, but some people do have serious allergic reactions to high dose steroids”.  See? Don’t tell a girl with a rare diagnosis that things ‘rarely’ ever happen.  It’s like putting a siren strobe light on my head, pointing at me and yelling at the universe
“That rare-side-effect-magnet-girl is HERE!  Come stuff her up some more!”.

Of course, in the interest of self protection, I always do consider the worst-case-scenario when I am embarking on a new medication.  I scan the Medsafe sheet and think ‘Can I handle that?’  If I am prepared to handle that in exchange for the benefits the drug might bring, then it’s worth the risk.

So this was the list I examined last night.  It’s from the Mayo website:

Add a little bit of body text(3)(yes, I know, the highlighting slipped on the second group of my graphic, but tonight, I don’t care about getting it just so!  Handle the jandal design minded peeps, it’s really, okay).

I scanned the list and realised that of all those side effects, most are my current symptoms anyway (highlighted in yellow). Nothing new there.  The ones highlighted  in blue are not usual for me, so would be easy to spot if they turned up.  I decided it was worth the risks.  But there were other sites I visited, too.  Ones like this one, that listed side effects I felt sure were too nice for me to ever have.  Like euphoria (apparently this ranks at #36 in all on online discussions about IV steroids).  Euphoria is a sense of ‘misplaced wellbeing’.  Or as one of the sites describes it: ‘inappropriate happiness’!  When could happiness ever be inappropriate?  Well maybe at a funeral. Or job interview.  Or in the wee small hours.

I arrived at the Immunology Daystay and we got underway.  The Immunologist who saw me was wearing killer heels and wrote with a Mont Blanc.  It was a brilliant start. I wanted to get a photo but I thought she might think me weird.  She was that sort of doctor who talks to you without any hint of superiority, too.  Taste and tact.  Smart and sensible and kind. I liked her right away. She asked me questions and explained the process.  I signed the form.  They stuck the needle in my hand, taped it down and away we went.  It’s the fastest infusion I have ever had; it only took a morning.

This is what I noticed:
First, a rising metallic taste in my mouth.  It even made my water taste brackish.  The kind lady next to met gave me a mint.  She was nice.  We talked about books we loved (she was reading Barbara Kingsolver’s Flight Behaviour and I am in the midst of Karen Joy Fowler’s We Are All Completely Beside Ourselves).  I began to feel woozier than normal and really tired.  I noticed when I got up that my legs were weaker.

Back at home, I propped myself up in the armchair and drank a cup of bitter tea.  Then the hunger hit.  I was a ravenous creature! Thankfully, an entire pomelo was on the bench (pomelo are giant fruit from my childhood in the tropics, kind of a cross between a huge grapefruit and a mandarin).  I ate a whole one.  What? They’re only the size of a human head! And then (shhhh) a few other things besides! Aunty Dee’s tua tua fritters with wasabi mayonnaise,  a salted caramel and date cupcake.  There goes my liquid diet!  BAM. Delicious.  By late afternoon I felt really odd.  Just wrong, weak and dizzy, but different to my normal weak and dizzy.  Who knew that weak and dizzy had so many different presentations? I lay and marvelled about that.  All the different dizzies.  I was sleepy, but I didn’t couldn’t stay asleep.  I got ready for bed, hoping sleep would claim me for the night.`But there in the back of my head, there was a shiny little secret twinkling.  I pulled it closer so I could see what it was.

Every little thing is gonna be alright.

‘That’s odd.  So not true!’   I thought.  ‘But it is true, come see’ was the thought that came back at me.  I closed my eyes and this is what I saw…

Earth, from space, like you see in the movies, all that blue and green with wispy scuds of clouds.  Breathtaking.  But as I looked I saw that in some places there were burnt patches.  I knew; those patches were the horror scenes we see on the news, we read about in books, we worry about as we hold our babies close. And then, from the back of my tiny brain, somewhere down there in New Zealand, that twinkly little thought rose up and burst through the atmosphere.  I saw it climbing up.  Then millions of starbursts of thoughts, from everyone else too, everywhere else, cutting vertical lines upward through the atmosphere across the entire planet.  Then they bent and arced around the earth, forming a web of light that shone down over everything, even the burnt places.  And there was regeneration.  But new burnt patches appeared, pinpricks and vast stretches.  And the arcs of light kept shining. And the world kept healing itself.  One patch at a time.  Links of light shining down in the dark spaces.

I opened my eyes then.  Looked around my room and thought:  
‘There is more good than bad’. And that little epiphany made me happy.  And the happiness just sort of filled me up.  Just like that.  I haven’t felt happy like that for a long long time.  I’ve felt content, but not so completely happy.  Better than being able to hike up to a good view, even.  Better than being deliriously tipsy in the kitchen, lost in the sway of your man’s arms and a good song.  Better than floating on your back in a sapphire sea. A better buzz than most of life’s joys.  Better than baby feet! So nice to feel that every little thing is going to be alright.  So good to feel it in my bones.

And then it occurred to me.  HAPPY DAYS! Far out, Rachel.  I’m experiencing euphoria!  For once in my life, a nice side effect!  Huzzah!

And then I chatted with my dear friend, Nettie, and I rocked around the internet marvelling at it’s extraordinary wonders.  I felt a growing sense of Eudaimonia (there’s a word to make you happy); human flourishing.  Another thought twinkled away: this illness, this experience, it’s a process.  It’s not the opposite of good, it’s just a process, like any other biological process.  I can flourish from it just as well, or maybe more, even, than I could have if I were well.  And I am, I will.  I’m a quick study. And that thought made me even happier.

The Bobby D came into the bedroom to go to sleep then, it was already late and he was concerned.  I don’t do well with poor sleep, so he suggested with that lovely man-kindness, that I call it a night.  But you know what?  I JUST COULDN’T.  I am happy!!!  I want to squeeze every last drop of this euphoria out.  I told him I needed to write (that look lasered over at me) and that I would come to bed as soon as I possibly could.  I repaired to the living room and lay on our lovely long velvet sofa.  It makes me happy too. The feeling of my feet brushing across the nap, smooth, rough, smooth.  Life.

And I wrote this down.  Well, in fits and starts.  I’m a bit distractable tonight!  Flitting here there and everywhere in my laptop world! Loving all of the world, the light and the dark. The shiny thoughts that are gonna make everything all right. It’s all probably a bit wuwu.  I hope it won’t be so nutty I will have to delete it tomorrow.  Because I want to capture this feeling.  Can you feel this joy?  It’s so nice. It’s like one of those big round papasan chairs but instead of a cushion there is lots of sunshiney light, and I am coccooned in it; euphoric!

Goodness!  it is nearly 2am already.  How did that happen?

May euphoria find you some time in your lifetime too.  And may it not be via drugs.
It’s wow.

EUPHORIA

 

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?