Callooh! Callay! He chortled in his joy!
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!
(from Through the Looking-Glass and What Alice Found There, 1872)
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.