I bet the first thing you thought was, ‘she’s having a flare’. But you know what? I’m using the word ‘fire’ in the way that people living with chronic pain only dream of – to describe ability!
I am on fire… and feeling great!
Had you told me I would be able to have these moments (yes, I’m still at moments) when I was scoring my pain for getting the milk out of the fridge in 2011, or even just a few years ago, I would have told you you were mad.
At the 4 year mark, my brain was directing me to specific ideas and ways to put an end to the pain… and my life. My brain has never considered such dark places – I was always super upbeat and had endless reasons to keep on living. But I could not stand the excruciating levels of pain that I was in all day, every day.
The contrast of this current status leaves me in disbelief and is exhilarating and thrilling.
So what’s changed?
COVID-19’s constant restrictions are helping me enormously! I’m so tempted to cull my social circles and activities even further because this feeling, is heaven.
With the current Omicron spread, Theo and I are tucked in and not going anywhere – not even for a local coffee or drink.
Theo is on deck seven days at work and we need to do everything we can to avoid getting sick – just can’t close the gallery. Just can’t risk another health issue nor the loss of even more income – have lost enough of that!
This sacrifice, caution, limitation and protection for our health is very familiar to both of us. It’s how we’ve been living for almost 15 years.
We’ve got this and we’ve got it great. There are regular goodies delivered to the door, beautiful meals thanks to Theo, sensational walks, glorious breakfasts with the newspapers in our home, crosswords and sketches and our divine little Olive to keep us very entertained.
And during the day, even some painting bliss! Confidence to tackle a new direction with my love for Venice – oh how I want to travel again!
(Image: (Near) Rio De La pergola Venezia 2022 Soula Mantalvanos acrylic and conte on panel 18 x 13cm )
I know, I know it won’t last forever.
I do know this, I’m not cured! But I can bank on the fact that this is a pace up and fragments of this achievement will remain and I can grow them – that’s what’s been happening at minuscule paces since my diagnosis in 2011.
During this divine period, I have learned how I can get myself here again (maybe for a special occasion) and I also learned that my body can achieve this – the biggest delight of all.
My body couldn’t get here before. All my body was able to do for the first 9 years was be in a lot of pain.
I have continuously worn leggings and undergarments to keep my body supported and so nothing jiggles or moves to rattle the bod and set the nervous system off. I’ve always purchased specific footwear, never lounged on the couch on my back or sat cross-legged… and that’s just a few of the squillion changes I’ve had to manage.
All of that seems to have taken a little holiday.
I can feel my linen dress sliding around against my body as the wind moves it, I bought a new pair of SANDALS and thought about painting my nails. I put my anklet back on and my toe ring and I felt like buying (and did!) new underwear that was nicer than the ‘you’re not worth it brand’ I’ve been wearing. Oh and the bliss of walking barefoot… a lot!
‘Barefoot a lot. It’s a dream!
I’ve been funny and have laughed, my mood is so lifted. I looked in the mirror a couple of times and recognised that 37-year-old woman. What a surprise to see that she’s still there!
How bizarre it feels to be going backwards in age after pain has only ever made me feel old – each day feeling like a year.
There’s so much time to make up for.
But is it really just COVID-19 lockdowns?
I get my DNA report in a week. I’ve implemented a lot of diet changes that I discussed with the fabulous Dr Vittone and also purchased extra Vit D/K2 drops, protein powder, green banana resistant starch and I’ve dumped the dairy, upped the Coconut products, salmon, eggs and smoothies.
This could have a lot to do with the body changes I’m experiencing. After all, Dr Vittone is all about reducing inflammation in the body.
Isn’t that what most of this pain battle is? A nervous system that’s sensitive and screaming with nerves that get fat and swollen when they are upset?
That’s what it feels like to me.
We’ve had some stormy summer weather lately. You know that broody stuff that hangs heavy in the sky and makes your hands and feet swell? I will never forget what used to happen when this stormy weather would come to town – I’d be at my wit’s end feeling like my insides were going to explode outward.
I used to lie on the concrete floor… (about where the ball burst actually as we renovated and the area became our lounge room). I’d feel like I was dying and would lie on the concrete in an attempt to cool every part of my ‘about to burst’ body down. The second idea was to throw myself off the balcony… I was so uncomfortable.
I would see our dear dog, Zephyr panting with sweat and saliva dripping from his tongue as he paced the warehouse trying to manage his own storm response. Sweet darling.
That’s all on holiday too!
So is my story going to be one of inflammation?
Who knows what the summary of this pain story will be but notice I’m actually thinking it may wrap up one day?
Hope only left my side a couple of very scary times in the past 15 years. I am grateful it stuck to me becoming my great friend and giving me the strength to push through.
I can guess my current exhilaration stems from the lockdown living and my new genetic investigations. I can see I’m building on all the work I’ve done previously in attempts to turn the volume down on this monster.
My spinal cord stim has been the greatest chipper of chronic pain. Teamed up with a drastic change of life and all the other ongoing investigations it’s all finally feeling like it’s ganging up on the beast.
I can only see that now. I have been chipping away.
I look forward to this week when I will get more leads with that DNA report. I want to know EVERY possible thing that might cause inflammation in my body so I can implement every change. I’m throwing all I can find at this monster and I’ll keep searching for new ways to continue that process.
So hang tight, I might have more answers soon! At the least, I hope that I can keep wearing my new sandals and new ‘I feel good about myself’ underwear!