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.

 

 

 

Mother Hearts

 

baby feet, mother heart
Source: Foundation for Biomedical Research

“When were you ready for babies?” one of our babysitters once asked me.
She was in her late teens, a natural with our kids.  I wondered if she was beginning to notice that yearning within herself, that quiet mother-clucking, the sound that might grow to a hormonal crescendo by her forties. Was she wondering what it would be like to soothe her own babies to sleep instead of other people’s? I used to. I notice with interest these days, that it’s no longer fashionable to say you would love to have babies.  Not until you are at least in your thirties.  Why do we act like wanting babies is a timetabled urge?  Switched on by suitable circumstances?  I will always be grateful my circumstances brought my babies to me at a time when I was old enough to provide for them properly… but then I think, if they had come earlier in life, I’d have not been this unwell.  I don’t know why things happen the way they do.  Life is a peculiar thing. And it is good to remember, that for some, platitudes around motherhood like all in good time, or it will happen if it is meant to are painful, useless things to say.

“…about four years old I think”, I answered, truthfully.  When I was four, I already had a ‘baby’ of my own.  She was my special Sheila Carter (er, yes, that was her name, I named her in honour of a retired missionary we knew) and I clucked over her and loved her with fierce mother attentions. I loved the feel of her body in the curve of my arm and the way, if you bent her legs outwards, she could sit on my hip. She was the focus of all my games.  Where we lived, out in the back garden, we had a playhouse made from a packing case.  It had a fake shingle roof and tiny windows.  Outside the windows, within the reach of my eager little hands, was a grape vine, supplying great green orbs of sour sweetness for our playhouse meals.  There were daisies in the garden for gathering into chubby-handed bunches and mini furniture inside made from apple crates and hand-me-down cushions.

 

The original Sheila Carter
The original Sheila Carter

The boys, mercifully, spent most of their time up at the boy fort on the boundary of the yard.  But the playhouse. It was the sweet domain of the girls, untainted by rapid machine gun fire or cowboy-and-indian war cries.  We ‘cooked’ green grape stew, played house, and I tucked my Sheila Carter into the cot with purple paisley sheets.  She ate sitting up in her little high chair with the duck decal on the back.  I was in little Mummy heaven. One of these sunny evenings, my own Mum called us in for dinner.  But Sheila Carter was just so tired and she was still sleeping.  So I patted her tummy and ran inside.

I knew; the rule in our house was that you never leave your toys outside.  You certainly should never leave your baby outside.  But I realised too late that the rule meant I couldn’t go back to retrieve her. I wasn’t allowed.  My punishment that night was to sleep without my baby in my arms.  I cried my little four year old mother heart out.  I had let Sheila Carter down and I missed the curve of her little plastic body against mine.  Eventually too exhausted from tears, I fell into a nightscape of bad dreams.  
The next morning, as soon as the grey light filtered into my bedroom, I raced out to the playhouse to find Sheila Carter.

But she was gone.

Nobody has ever been able to tell me what happened to her.  Maybe the local dogs carried her off, or some kids decided to cause some havoc.  But she was gone and that was that.  I think my Mum was horrified.  She hadn’t meant my lesson to be quite so harsh as that!  They tried to console me by taking me to Wellington on my birthday, to choose a new baby at a big department store.  My new baby was a ‘Baby-This-n-That’ and could wave at me.  We called her Katie (a much better name for a doll, they said). She had silky blonde hair and big blue eyes.  She was cute.  I loved her and I still have her, but my little Mummy heart has always grieved for Sheila Carter, my first sweet baby.  She was the reason I could answer that babysitter with confidence.  I have been ready for babies since I first knew the joy, and the pain, of mothering. It’s what I was born to do.

I have many friends who, like me, were “born” mothers.  But they are mothers without babies.  For some, their babies passed away.  For others, their babies were gone before they arrived.  For still others, life circumstances have rendered their mother hearts empty, simply for lack of a daddy, or the years and endless cycles of IVF have not brought them what they hoped for.  Their arms; missing the curve of a baby who is all theirs.  A baby they have dreamt of and not been able to hold on to.  My heart breaks for them, for their mother heart’s grief.  For the longing that must surely be difficult to manage in the absence of the busy-ness of babies. In the presence of other people’s joy.  I know it is old fashioned and whimsical, but I so wish I could grant them baby wishes.  Supply them with the warm bundles of love to cherish and nurture.  I’m not saying that every woman needs a baby.  No.  But everyone of my girl friends who is without children, longs for them.  It is an ache that is so hard for them to bear.

So today, this post is in honour of my beautiful friends. The one’s whose arms are empty and hearts are longing to give love to little babies of their own.  You battle every day, to smile in the face of the losses you suffer, one moon after another.  You are strong and worthy and wonderful.  Any baby would be lucky to call you Mama.  I wish I could make the heavens do my bidding.  If I could, your mother love would have a place to go, and no one and nothing would ever carry that away from you.  I honour you for your loving hearts and the ways you give to others, sometimes without return or kinship.  I honour you for keeping on.  I honour you because you stay strong.

And my mother heart wishes I could just make it all better.

 


This beautiful song took me right back to that playhouse and my girlhood dreams.