Hundreds and Thousands

1521719_10153162285630815_8428987546632118258_nHello.  I’ve been having the sort of family weekend I have been dreaming of for a long time.

A normal kind of weekend.

Let’s see… a bit of shed building, a trip to the airport to pick up Ceci, supermarket shopping, baking, a few loads of washing, movie night, a short family bike ride. A bit of blogging.

Did I mention baking?!  I just banged out a double batch of our family’s favourite chocolate cake!  Then I wrapped the individual portions and popped them in the freezer for lunchbox treats! And yes!  That is worth all those exclamation marks! It feels… so good.  I’ve had this enormous well of frustration over the all the mummy tasks I haven’t been able to do; it’s been getting deeper and deeper over the years.  Sometimes I have let myself wallow in it and feel very, very miserable about it. But today I was able to drop the bucket in and start ladelling out some of the overflow, because today, I did a whole mummy task!  It feels like a real achievement, kind of a yardstick of how much better I am feeling.

And as an added bonus, I have a blogging friend who runs a regular instagram baking event.  She calls it #sundaybakingsunday.  I’ve wanted to join the sunday bakers since I first found out about it, but by the time Sundays rolled around, I was always too unwell.  So this Sunday, I baked, and I instagrammed it! I’m not much of an instagrammer, so that felt like a double win. Thanks to having the ‘roids on my side!  Rach on ‘roids is such a different creature to get used to.

She contains all of the latent wishes of the Chronic-ills Rach.  She carries all the internal lists and hopes and pressures. She is determined to use all this Steroidal benefit to good use.  She’s on a mission! But if she is honest, she’s overdoing it a bit.  Probably a lot. She’s been racing around like a crazy thing, trying to ‘catch up’. And so she crashes.  And it’s true, she recovers much faster than she ever did before.  But she’s feeling a bit stressy.  A little overwhelmed.  Probably a lot like the average Mum.

Before Kellie passed away, she and I were talking about how it was going to be when she got better. She said she was afraid she would take wellness for granted. She didn’t want forget the lessons she had learned while she was sick and go back to the busy-ness of life pre-sick.  She wanted to remember what was important. We promised each other that we would keep each other on track.  And I have been thinking about that conversation.

I seriously doubted I would ever feel like this again, you know? Able!  So I wasn’t prepared when it happened. But I am feeling more able, and it is a carnival of possibilities!  I don’t know how long these good effects will last, or if this treatment regime will eventually lose against the ‘thing’ that is attacking my autonomic nervous system. So I am conscious that this time I have on the other side; this feeling-good-ability, is so very, very precious. I don’t want to waste it. So why do I find myself heaping on the pressure? Diving into stressville? Why must I cram so much into each day?  I’m like a starving creature in the face of a feast.  I’m so afraid someone is going to take it all away.

The hubster and I had a chat about that today.  About taking it easy, slowing down.  That maybe I need to “Settle, petal”.  So I am here, on my bed, in my ‘corner office’  …taking some time out to write this little update.  I hope you are having a good weekend too.  I hope there is enough of the relaxation to balance out the tasks.  I hope there’s a little bit of mooching in there somewhere. I hope you are getting the balance right.  I hope we are all remembering what is important.

Regular life has become pretty busy since I was last here!  Slow down you lot!  And you, too, Rach on ‘roids.   🙂  You don’t actually have to do hundreds of thousands of things just because you CAN.

Do you feel overwhelmed by the pace of normal life too?
Are we all just a little bit crazy with all the things we try to get done?
Why do we do that?

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

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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.

 

 

 

…and Climb

Ko te pae tawhiti whaia kia tata.Ko te(1)

I am engaged in reframing identity post morbidity.  That’s the technical term for when you have to accept your sick self after a diagnosis.  Getting used to the new you.  I feel like illness has been gradually wrapping me up in a chrysalis, restricting my movement, constricting my experiences. But who I am is still there.

I think of that girl who defined herself by the things she did.

She danced, drank with abandon to usher in her dutch courage. She enjoyed philosophical discussions, standing around with other smokers, blowing out puffs of smoke with a thoughtful squint to her eyes. She was a good-times-girl with a tendency to sudden sadness, a seeker of fun and a girl on the run.  A subversive rebel. A smarty pants with long blonde hair and an attitude.

She did other things too.  Travelled, worked, studied, excelled.

I feel conceited writing that, even in the third person. But it is true, regardless of how awkward it feels to write it.
And all of the things I did were proof to me of who I was, what I stood for, my standards, my skills, my talents, my way of doing things. So what to do now?  Now that I don’t do much of anything? Who am I now?  Am I really still me, wrapped up in a chrysalis? Am I really constrained from being me?  Does it change the sort of person I am?

No.

Only the way I express it.  Does it change my goals?  Well, yes.  It makes them further away. But it makes them simpler too.

These days, I can’t give myself over to latin rhythms anymore, spinning round the dance floor, part of an energy exchange, lost in the force of motion, moved by the music and the slightest touch of my partners hand. How do you dance without smiling? How do you smile, without dancing? I felt such freedom in that movement, my hair swinging out behind me, weightless and turning and pulling back into the hold. Such a beautiful feeling. Rhythm and connection.  Music. I can still  listen to that music and touch on the sweet-spot. My memories of dance.  I can close my eyes and feel it again.  The air, moving against my hair, my obliques, twisting and turning.  My calves, taut and quick. Me, in heels, skirts and sexy strappy tops.  The warmth of bodies moving beside mine. The slip of the dance floor under my feet. Can I use those memories to help me find myself again?  Is it finding these words that takes me there?

Nor can I indulge in my professional passion of teaching.  Preparing my classroom for the first day of school… the smell of brand new stationery and the energy of potential; just waiting to spring from the air into works of art, words of heart, thoughts and epiphanies.  Kids finding their moment of understanding, seeing the possibilities and running with it.  I can still look through those photos of my first classroom, my first ‘kids’.  See the pock marked desks, the spelling lists and the self portraits, framed against a bright blue cardboard sky.  The book boxes, chair bags.  The smell of pencil shavings and old bananas, smelly shoes and whiteboard cleaner.  The joy of my own desk, my own resources, everything to hand and in it’s place. The clear eyed faces I would know so well, gazing up at me, waiting to begin.  Can I use the memory of teaching to help me learn something new about myself?  Learning requires you to know that you don’t know it all yet, to question, to risk new ideas.

I can’t do things like I used to.  It’s time for a new idea.

I am the person who did those things.  That dancer; who let herself be moved by the rhythm.  So I know how to bend and sway.  How to roll with the ebbs and flows. I am the teacher; I know how to think, communicate, to ask questions.
My goals have not gone away, I just need to do things differently, find new ways to travel through time.  I am flexible, I can work it out. Word it out. I am, who I am.

The chrysalis is falling away.  I needed it to hold me tight so I could grow my wings for flight.  Not dancing, not teaching, not doing. But winging my way into a new kind of being.

Ko te pae tawhiti whaia kia tata.
Ko te pae tata whakamaua kia tina -Tihei Mauriora