Let me introduce myself. I'm Jackie, a musician, writer, performance poet, charity founder, wife, mother and clinical obsessor of all things wild and free. This is me. I'm also a would be exercise nut - of the ever so slightly off-beat variety: mountain biker, sea swimmer, and, in my dreams, I run across the fells. In reality, recently I've been walking them pretty much every day - mostly barefoot, foraging as I go, reciting my poems out loud, sometimes crying, often meditating, occasionally skinny dipping. Because... ah yes, I also live inside a little box known as seronegative arthritis. So for me to move at all - especially in total solitude and freedom amongst my beloved hills, is... incredible. I'd put in a pic but I'm new here and it's not loading, so let's just pretend...
Hi! I'm on top of our one and only Manxie mountain (Snaefell, Isle of Man). It's early Spring 2017 and late evening. I'm freezing! I'm not happy or sad. I mean - I should be ecstatic. I'm 16 months into crazy 'collapsed pelvic ligament' action... (insert: zero action on my part), and this is the first time I've walked so well in all that time - a ground breaking achievement! But now I'm in agony and have to get all the way back down. Don't worry. I made it - mostly on my bum. In a few weeks from now I'm going to discover (from the results of a WAY overdue MRI), that actually, it's been the illness all along. Sigh. I mean... I've had the illness since 2013, it was pretty obvious really but... argh. Let's not go there... I did have a steroid injection though and I'm much better now...
So quick rewind and fast forward... I got sick June 2013. The disease went full on crazy throughout my entire system September 2013 - the very day my youngest baby started school. I was diagnosed Friday the sodding 13th of December that year - after 3.5 months of being unable to even leave my kitchen chair/ use the loo/ turn in bed/ feed/ dress myself.... and then I began LOTS of drugs. These took away most of the pain, but little else. I still couldn't walk.
The main problem however, was this: I NEED FREEDOM. Yes, I know we all need freedom. But. I NEED FREEDOM. Now, don't argue with me. The fact that freedom is actually the driving force behind pretty much everything I do, was actually confirmed by a values elicitation thingamajig I did for the Life Coaching Course that I WILL FINISH TOMORROW. However, I would agree that yes, we all need freedom. Watch and learn people, watch and learn... So let's start here: Feb 2014... Unable to move all but my fingers with any ease, I begin writing, and so The Boy Without Wings starts to emerge - my first novel. More about him another time. May 15th 2014. My mind pickled from the ridiculous notion that scoffing down a ton of pills would make me 'well,' even though I still couldn't walk, and my utter fury at being dependent on people, I decided to take matters into my own hands. I therefore switched to an intense low fat, plant based diet ... And... 7 weeks later... I had improved so much that I swam round Peel Castle! Three months later I was off all steroids and competing in a the swim leg of a tough man tri. Brr. A year later - still with shit legs to be fair, I competed in a 75km mountain bike End2End race. I was FLYING! Off the proton pump pills, the steroids, nearly off the sulfasalazine and on 2/3rds my original Methotrexate dose.... I WAS WINNING! Then... disaster. November 2015 my hospital care hit the buffers (= high stress and grrrr) and with it, my hips. BOOM!
Not good. Luckily, I'm a seasoned distractor. I honed this skill whilst recovering from a mammoth, hypothyroid induced, tinnitus induced, emotional breakdown. Freedom = reinvention, lowering expectations, learning new things, taking responsibility, making yourself useful... I tidied my novel, (Ok, still as yet unpublished) set up an AWESOME charity and became a storytelling poet. But I think that this time, life hit me a bit too hard. This was not good. And often I wonder, even though my life is now, in so many ways, richer than ever, will things ever truly be good again? I'm distracted, I'm sad, I'm both reclusive and angrily over-confident. I often feel hollow, like I've been hurt so much and so hard that I'm as the smashed pot someone's glued back together, but, in doing so, unintentionally missed all the rock solid parts. Will I ever be free from meds or released from chronic stiffness and pain? Is it truly an option, when you've been betrayed so deeply by life, to find trust again? Or will a fragment of grieving, always remain? Faith hope and truth, humility, freedom, Will I ever stop recklessly destroying the guidance I'm given? And in doing so, Can I teach something new? Who knows? Let's explore....
My blog is a poetic record of both my life with, and my efforts to crush,
seronegative arthritis.
(https://steemit.com/@girlwithoutwings)
seronegative arthritis.
(https://steemit.com/@girlwithoutwings)
Welcome to Steem @girlwithoutwings I have upvoted and sent you a tip
I have just been checking your stuff out! Fantastic!
Welcome. I look forward to checking out some of your work.
Thank you! I've no idea how this site works but i will check out your stuff too !
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STOPHoly $#@T. I feel I could cut and paste this! It resonates so much with my current conundrum.
One girl to another, WELCOME TO STEEMIT.
Thanks for your post.
Resteeming as I wait for yet another MRI 👭
I had another MRI last week - here's my Ode to it :) I hope yours goes well. I always ask them to fire out some BBC radio 3 at me, then close my eyes and drift... Huge love to you xxxx
https://steemit.com/poetry/@girlwithoutwings/as-i-reached-for-a-peach
You get music?. I get disposable foam earplugs.
This was one of my poems about existing.
I have been laid up for about a year. Really hard time.
Still looking for solutions.
I have a connective tissue disorder and all that goes with it.
https://steemit.com/collaborativeartjourney/@girlbeforemirror/slivering-below-the-edge-of-existence-a-steemit-collaborative-art-journey
Oh shit - lupus or something? I am getting my mobility back a bit more now. I couldn't walk really for 2 years at the beginning - but then I started to really soar with all the plant based stuff - until the hospital totally annihilated me and everything went backwards. Being laid up is fucking dreadful. My heart goes out to you. Will check your poem out now. sending you buckets of warmth and compassion.
Haha yes! we get music! We also get a 13 month wait tho so you'd think they'd be some bonus :)