On the brink of my big bang’s 14 year anniversary I have a very exciting announcement:
‘I have arrived!’
‘Where?’ you ask. And you would have the right to wonder!
With my needle and thread returned to its place in the sewing basket (yes, I have one!), I arrive and declare:
‘Life is finally stitched back up again!!!’
Everything that chronic pain had undone in the first nine years of this 14-year nightmare, Theo and I have managed to finally mend.
Stitch by stitch, we made a new house, founded a new livelihood, purchased a more comfy car, made new friends, welcomed a different breed of fur child and all of this in a new (unfamiliar) town. It’s a rebirth!
All of this, driven by the hunt for pain management after a ball pop, drop and a bang.
Or was it…?
Yes, we made a few thousand failed attempts to adapt to chronic pain’s demands in the first nine years – a routine of; receiving treatment, being overly optimistic, restarting our business, realising I couldn’t manage, shutting the business down… and all the while, endless home renovations, Theo trying various jobs, all in an attempt to find a way to comfortably live and work. Theo and I chopped and changed everything, even our VW rumbly little rocket car was sold – it was too hard for my pelvis and vibrated far too hard for my fussy nervous system.
Life continued spiralling down and falling apart.
I look back at the lovely life we had and it isn’t the rewards that made it… oh, wait, hang on, yes actually, the rewards did make it!
We’ve always had a ‘work hard/play hard’ approach to life. I could have counted the days I ever had off work on one hand up until the fitball burst. Both Theo and I worked long hours, dedicated to our beautiful clients so we could reward ourselves.
Our warehouse home/office was beautiful and our lifestyle was full – we dressed well, dined well, enjoyed cultural experiences, travelled and shopped. It was not a simple lifestyle but not an extravagant one either. It was just right.
It’s been a work in progress making our way to some form of that lifestyle over the past 5+ years.
The core of the problem – not chronic pain and not the complexity of pain management, but rather WorkSafe.
I’ve learned a lot about insurance these past 14 years. My WorkCover insurance experience was difficult, traumatic and gruelling. Very often, my support was pulled from underneath me and this has left gaping holes in my income and finances (along with being unable to work).
In 2014 when I declared a part-time capacity, WorkSafe and their groupies ceased all my support instead of continuing to top up my full-time wage. Treatment support ceased also.
I fought. With no wages, I fought! As the system tried to bury me I began writing to Ministers my voice rising above, my experience documented in the Victorian Ombudsman’s (second) report (mind you, with additional info that the insurer withheld from me – illegal!).
Even after the Medical Panel ruled in my favour, the insurer was able to deny my earnings. WorkSafe did nothing about it. The Accident Compensation Conciliation Service – the organisation which is meant to provide some kind of fairness and justice also failed to help me (as it did and does others). WorkSafe, as the regulator, continues to do nothing about it.
I won’t stop expecting the return of my funds, and an apology to Theo and I for being left to stitch up life while my insurance was in the pockets of WorkSafe and their ‘friends’.
Sink or Sew
In 2014, a serendipitous house swap scenario, saw us planted away to work things out. Far away where we could not be influenced by the life we loved and grew.
‘How do we start again? How do we work with this beast?’
We dissected ourselves, our talents, our abilities and especially inspected our limitations and how we could work with them.
We made a grand plan! And we committed everything we had to it, the first stitch sewn in a seaside town far from home.
This week, with the arrival of our new car we have sewn the last stitch. House, work, town, friends, car, pavement, finances, and everything in between has been replaced.
We find ourselves in a life re-established. It’s unrecognisable in comparison to the life we had before but it is great.
CV-19 has added another complication, but we’re not afraid. We’re fearless now and it’s easy to be so when there’s financial help – JobKeeper, JobMaker, Grants, loan interest exemptions (all the support that injured workers need and are denied).
It took a pandemic for my insurer to act (or was it my pushing and shoving?). Finally, the world understands what it means when people can’t work.
Of course, we’ll be fine!
Don’t confuse our positivity. Smiles, camera poses, uplifting blogs, a beautiful place to live, a new fur child, a new home, a new car. No matter how good it gets, we’ll always miss home and we’ll never feel ‘local’ – forever far away from our families. All of it arisen – not from my injury or the complexity of pain management, but totally from the unjust treatment of the Victorian WorkCover system.
It’ll always be a restitched life with the life beneath becoming a greater and more distant beautiful dream.
[…] my chronic illness has been a constant negotiation, and I’ve made many sacrifices to achieve the quality of life I […]
[…] my wages while fighting the system – and the rest! Having to sell my home and use it as equity to start a new life due to the lack of support and unethical actions by WorkSafe and their Insurers. The Victorian […]
Stitch by stich embordered a tapestry worthy of being hung in the worlds finest gallery.
The diamonds formed from teardrops and sheer determination to grow above the clouds.
The rainbows woven into being with the dexterity of a master craftsman who knows the loom in all its strengths and weaknesses and it silences and its sweetest songs.
The glory of love and knowing and simply being standing strong in justice and knowing the façade of a system that portrays itself as only Narcissus can.
If there is one thing I know about both of you it is that no matter what thread comes next from the sewing box it will be stitched by the fingers of an alchemist.
You are so beautiful. What a divine comment… xx
Hi Lee,
I had a SCS implanted in September for sciatic nerve pain. I was out of hospital 2days later. If you’ve had a trial it’s the same deal. No lifting, twisting, reaching, bending for as long as possible to make sure the wires don’t move. My neurosurgeon screwed my wires onto T9 to stop them moving & that gives it a much better success rate.
I hang my washing on a little airer so I don’t have to reach up. I sit on the bed to change & dress & I put non tie up laces on my shoes so I didn’t have to bend to get my shoes on. I also tried to put everything I’d need at waist height & my friends loaned me a mechanical claw so I could pick up all the things I dropped. Hardest job was feeding the cat. The claw dropped & broke a few bowls!
I hope it goes really well and you get a huge improvement!
I’ve been able to go from working 1 hour to 4 hour shifts although I still take days to recover after. Better than nothing!
Thanks for your quick reply.
Hmmm I hadn’t thought about feeding my fur baby????.
Spot on Jay! And so great to hear your working. You will continue to pace up. At the one year mark you turn a huge corner. It takes a while for all to settle in the body I found and for me also to get the confidence to really move normally. That’s when the greatest benefit comes. You do also have to adjust programs, learn which are most suitable and of course we are changing all the time.
Thanks for the comment and support!
You have done very well Soula, to overcome all the obstacles in your life while still managing your pain.
I am getting a spinal stimulator implant on 8/3/21 after 9 years of struggling with my PN.
I am very anxious about this as the idea of wires in my back etc is pretty scary to me.
I have tried everything else and this is my last hope for some sort of normalcy.
I live alone with my little furry friend. However, after my surgery, my daughter is taking me to her house till I can manage on my own again.
May I ask how long it was before you could hang washing or dry your feet after your implant?
I would be grateful for any tips you can share.
Thanking you
Lee Bernard
Hi Lee,
I will make a video about the stimulation implant.
If it makes you feel more at ease, I have 2 stim implants. It does sound scary but you actually don’t feel the leads – they find their place.
Our bodies are amazing at healing and yes, you feel a bit stiff at the start but you can move, in fact you should keep moving gently.
I hung clothes on an indoor line, you can squat for tasks (have a stick to help you get up and down if you need to) – you get great leg/thigh muscles!
Once stitches are healed then you know you can be more confident to move. I dried my feet behind me with a small towel or rubbing on the bath mat.
It also depends on where your leads and IPG are placed.
It will be good for you to have help the first 5-6 weeks at least.
Good luck. You won’t know yourself!
Hello Soula,
Thanks so much for you, r encouragement. I have followed your story for a long time and remember seeing the xrays of your stims. I thought at the time, ‘I’ll never be able to have that happen!’
I live in Bundaberg, so have to travel to Brisbane for any treatment. At the end of last year I found a wonderful gyno/pain specialist in Brisbane who has helped me get this far. I just hope it really works. I have tried everything and everyone else, with no results. This is my last hope.
I’m 71, and yes I have a stick. Not sure about squatting!! (-:
I’m so fortunate to have my eldest daughter living nearby who is more than willing to have me stay with the family.
I will look forward to your video very much.
Thanking you
Lee Bernard
Lee are you able to get someone to help you prepare your space and maybe pop some trestles up so you can place things up higher for when you get home? (especially near the shower, for your shoes, the crockery, the washing baskets, etc). I believe you won’t know yourself!!!! The leads are really quite unlikely to move – you’d have to be very active or move drastically to cause movement from my experience. You just feel like you can’t move, we get protective and it is important to be careful in that first 5-6 weeks. It’s really the stitches, the healing you have to protect in that initial period and to make sure all stays nice and clean. Can you order your shopping? Have you got a trolley or a chair on wheels? Use it to move things around. I’ve got so many things on wheels…
Good luck!!! xx
Hello Soula,
Thank you so much for your helpful advice!
When I come home from my daughters place I’ll be all healed so things shouldn’t be too hard by then.
I have a dear friend who does most of my shopping but if I need a bigger shop I already do it on line and get it delivered. I haven’t been able to go shopping normally for a few years already.
I have an office chair on wheels. That’s a great idea! Thank you.
Thanks for caring.
Lee xx